The Other Conditions List

The following is a list of conditions that have been known to be a “member” in the Chiari Gang.
Neurally Mediated Hypotension
Intracranial Hypertension
Hydrocephalus
Neurogenic Bladder
Trigeminal Neuralgia
Spinal stenosis
Tethered cord
Numerous hormonal imbalances
Empty sella syndrome
Syringomyelia
Central Sleep Apnea
Ehlers Danlos Syndrome
Tethered Cord Occult

Basilar Invagination
Reflexed Onadontoid
POTS
Dystautonomia
Gastroparesis
Spina Bifida
Spina Bifida Occulta
Fibromyalgia
Lordosis
Migraines
Cranial Cervical Instability
GERD
MCAD Mast Cell Activation Disorder/Mastocytosis
CCSVI Chronic Cerebrospinal Venous Insufficiency
MS Multiple Sclerosis especially for EDSers
Sjogrens,
Scleroderma,
Raynauds,
Diverticulitis
Marfans Lupus
Pseudotumor Cerebri
APS Antiphospholipid Antibody Syndrome
Klippel-Feil Syndrome
Occipital Neuralgia
Scoliosis
Lordosis / Loss of Lordotic Curve
Oh, and in an attempt to lighten the mood… Prime Targets for Zombie Attacks {extra brains taste good}
Oh and the possibility of sticking to the refrigerator after too many MRIs
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DNA Healing Frequency

I have found more relief from going to Jin Shin Jyutsu than any pharmaceuticals ever gave me. During my sessions, my practitioner has this music playing in the background.

Here is some information behind how listening to music could help you feel better.

What Are The Ancient Solfeggio Frequencies?

These original sound frequencies were apparently used in Ancient Gregorian Chants, such as the great hymn to St. John the Baptist, along with others that church authorities say were lost centuries ago. The chants and their special tones were believed to impart tremendous spiritual blessings when sung in harmony during religious masses. These powerful frequencies were rediscovered by Dr. Joseph Puleo as described in the book Healing Codes for the Biological Apocalypse by Dr. Leonard Horowitz. I give honor to both of these gentleman for the part they’ve played in helping return these lost frequencies back to humanity.

The Six Solfeggio Frequencies include:
For example, the third note, frequency 528, relates to the note MI on the scale and derives from the phrase “MI-ra gestorum” in Latin meaning “miracle.” Stunningly, this is the exact frequency used by genetic biochemists to repair broken DNA – the genetic blueprint upon which life is based!

Check it out DNA Healing Frequency

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Zipperhead Pictures

11 Days Post Op

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Chiari Symptom List… does this sound like you or someone you know?

* Headache (esp. if daily or at lower back of head)
* Painful tension in neck
* Fatigue
* Migraines
* Dizziness
* Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or “halos” / nystagmus
* Tingling / numbness in the extremeties
* General imbalance / clumsiness
* Memory loss
* Restricted movement
* Intolerance to bright light / difficulty adjusting to light change
* Vertigo from position change or sudden standing
* Difficulty walking on uneven ground / feeling ground under feet
* Poor / degraded motor skills
* Difficulty driving
* Difficulty negotiating steps
* Pressure / pain in the neck
* Pressure / pain behind the eyes (soreness in the eyeballs)
* Back pain
* Neck spasms
* Insomnia
* Ringing in ears (like the tone heard in a hearing test)
* Swaying
* Pain when changing position
* Tingling / crawling feeling on scalp
* Intolerance to loud / confusing sounds
* Decreased sensation to touch in extremeties
* Decreased sensitivity to temperature
* Pain & tension along ear / eye / jawline
* Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
* Drooling
* Spontaneous vertigo
* Hand tremors
* Poor blood circulation / cold hands & feet
* Sinus / mucous problems
* Sleep apnea
* Decreased muscle tone
* Pressure in ears / ears feel stopped up
* Nausea
* Difficulty reading / focusing on text
* Depth perception problems
* Burning sensation in extremeties / shoulder blades
* Menstrual problems / severe cramping during period
* Fluid-like sound in ears (like water running)
* Loss of sexual interest / lack of sensation in pelvic area
* Pulling sensation while sitting / standing
* Intense itchiness w/profuse sweating
* Slurred speech
* Gag reflex problems / lack of gag reflex
* Pressure / tightness in chest
* Loss of bladder control
* Frequent urination
* Dehydration / excessive thirst
* Electric like burning sensations
* Unequal pupil size
* Loss of taste
* Popping / cracking sounds in neck or upper back when stretching
* Dizziness
* Loss of smell / problems with sense of smell
* Dry skin and lips
* Sudden / abrupt changes in blood pressure due to awkward position of head
* Hiccups associated with drinking carbonated beverages
* Skin problems

Other: migraines, oscillopsia, lump in throat, color blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, “strangling” feeling, “floating” sensation, thickening of finger joints

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Chiari {and other related condition} Angels.

When we long for life without difficulties, remind us that oaks grow strong in contrary winds & diamonds are made under pressure. Life is no brief candle it is a sort of splendid torch which we hold for the moment, & we want to make it burn as brightly as possible before handing it on to future generations. As Chiarians we’ll fight long & hard for a bit of purple ribbon to Conquer Chiari.

Garion Michael Barber
Orange County, Florida
March 29, 2008
Featured on Dr. G Medical Examiner Episode, Garion was an 8 year old boy who died in his sleep; reason for his death was ruled 4 months later as Chiari, a diagnosis a doctor had labeled on Garion earlier but never bothered to tell the parents.
http://journeltheconstituent.blogspot.com/2010/01/in-remembrance-of-garion-michael-barber.html

Len Lannon
Philadelphia, Pennsylvania
June 12, 2008
Len had brain and spinal surgery on May 1, 2008. He suffers from a disorder called Chiari Malformation. In addition to the brain surgery, two cervical vertebrae were also repaired. Len suffered some major complications on the third day of recovery. He developed bacterial meningitis, and suffered a stroke.
http://www.caringbridge.org/visit/lensfriends/journal/1

Charles Ross Oscar “Chip” Vierow
Lakeland, Minnesota
November 6, 2008
Founder of WACMA
Had been fighting a courageous battle with a liver disease called nonalcoholic steatohepatitis (which is not associated with Chiari). He spent the last few weeks in the intensive care unit awaiting a liver transplant, but became too sick before a liver became available for him.
http://www.legacy.com/obituaries/twincities/obituary.aspx?n=charles-ross-oscar-vierow-chip&pid=119893649

Clinton Botha
East Timor, New Zealand
March 7, 2009
A young New Zealand soldier who served in East-Timor. Botha’s promising career was being hampered by debilitating headaches, and he was told surgery would relieve pressure on his brain. However, twelve hours after that minor operation, Clinton died of respiratory failure at Christchurch hospital.

Brianna Lynn McCarthy
June 4, 2009
Peacefully away at the Health Sciences Centre St. John’s, NL on Thursday June 4, 2009. She was 34.

Rebecca Pence
June 2009

Jessica Depassano {Chiari}
Wayne, New Jersey
August 27, 2009
25, went into a coma for 3 weeks.
http://tinyurl.com/4xuftpf

Kelly Jean Davis Morrill {Chiari} {EDS} {Tethered Cord} {Hydrocephalus} {Subcraneal Instability}
Layton, Utah
October 10 2009
Two decompression surgeries, second was a full sinus, csf leakage on both, viral meningitis, shunt placement surgery, cranial placement surgery, 11 shunt revisions, staff meningitis, TC surgery. Kelly, 44, passed away peacefully on Saturday, October 10, 2009 after a long and valiant battle with Arnold Chiari Malformation. Kelly was a loving wife, mother, daughter, sister, aunt and friend. She was born February 4, 1965 in Ogden, Utah. Attended Utah State University, served the deaf as a sign language missionary in the Virginia Roanoke LDS mission. Kelly started a website to provide help, support and information for others who are affected by the Chiari Malformation
http://www.utahchiariconnection.blogspot.com

She is survived by her husband, Rob; her four children Tyler, Chace, Sam, and Sarah. Condolences to http://www.lindquistmortuary.com

Sarah Thomas {Chiari}
Joliet, Illinois
October 14, 2009
22, Thomas eventually learned about a renowned neurosurgeon based in Milwaukee, Dr. Dan Heffez, who had performed operations on hundreds of patients with similar symptoms since the late 1990s. The published results were encouraging, said the teen, whose familiarity with medical vernacular was light years ahead of her chronological age. With the wholehearted support of her parents, Thomas scheduled a consultation in the fall with the physician in Milwaukee. He detected blankets of scar tissue draped around the teen’s brain stem from Arnold-Chiari syndrome and suggested surgery as soon as possible. “It was such a relief that someone found something,” she said. The dedicated high school honor student was able to schedule the surgery during her Thanksgiving vacation, so she would miss the least amount of school as possible. On Nov. 21, 2005 Thomas underwent surgery. While recovering from the operation, she was delighted to wiggle her toes again and move quite easily from the hospital bed. “It was nothing short of a miracle,” said the teen-ager’s mother. Speaking about the teen’s remarkable improvement, Karen said, “I can’t describe it)

Melinda Kay Fancher {IH}
Weatherford, Oklahoma
January 5, 2010
http://tinyurl.com/3e9fva4

Charla Cochran {Chiari}
Dallas, Texas
March 18, 2010
Mom of 3 great kids; Collin, 14, Maddie, 12, and Macie, 6. Was married to the love of her life, Jeremy. Had an endoscopy on 3/13, died in her sleep 5 days later. http://www.facebook.com/charlacochran

Brayden Asher {Chiari Type III}
Tomball, Texas
April 12, 2010
1 month old with Chiari Type 3
http://www.youtube.com/watch?v=9CeD1Ut4_aU

John Smith {Chiari}
Grapevine, Texas
April 23, 2010
John was decompressed in 2004, he was an amazing father, son, brother and friend. John was 36 when he died leaving be hind two amazing children Colton and Garrett. He was found in his front yard, he could no longer take the pain and the Doctors said deal with it. A graduate of Grapevine high school, he got his degree at TSTC in Waco worked at Gulfstream Aerospace. He could make anyone having a bad day have a good day. There was nothing he couldn’t do or fix except Chiari. Loved the Cowboys more then anyone I have ever seen, crazy.
http://www.facebook.com/profile.php?id=100000620034473

Tyler Moore {Chiari}
Lorain, Ohio
May 29, 2010
20 years old with Chiari
http://www.legacy.com/obituaries/courierpress/obituary.aspx?n=tyler-moore&pid=143284023

Sally Meehan {Chiari}
Filton, Bristol, South Gloucestershire, UK
June 29, 2010
39 years old six months after giving birth to her second child Mrs. Meehan died in hospital after an operation to treat a rare brain condition. The former Filton High School pupil had gone under the knife after being diagnosed with a previously undetected condition called Chiari malformation. On June 26 she died after failing to recover from the emergency operation. She had an operation at Southampton General Hospital in a bid to treat the illness and although it was initially deemed a success, her health deteriorated, causing heart failure, and although she underwent an emergency operation, she never recovered.
http://www.thisisbristol.co.uk/news/Rare-brain-condition-took-Sally-soon/article-2387655-detail/article.html

Canton Ossoinik {vEDS}
August 11, 2010
Waukesha, Wisconsin
Canton passed away due to a dissection of his aorta due to Vascular Ehlers Danlos. He was 30 years old and we knew he had VEDs for ten years.

Nicholas Joseph Thornton {EDS}
August 18, 2010
Milford, Michigan
14 years old.
http://karrersimpson.com/obituaries/nicholas-thornton

Wendi Snell {Chiari}
Jacksonville, Arkansas
September 18, 2010
36 teacher, wife, & mother from Jacksonville
http://arkansasleader.blogspot.com/2010/09/obituaries-09-18-10.html
http://www.pcssd.org/super-corner.html#23sep

Amy Krambeck Campbell {IH}
Nashville, Tennessee
September 18, 2010
I have intracranial hypertension (IH) since 2005 following a stroke. This was due to 12 clots in the right side of my brain caused by clotting disorders. My spinal pressure is out of control and I have a shunt in my brain to help relieve pressure, but it isn’t enough. I have had 9 brain surgeries, 4 spinal surgeries, lost count of the spinal taps, numerous other surgeries and infections. I take between 12 and 15 pills daily to manage my blood and prevent seizures. She passed due to the clotting disorder after unrelated surgery.
http://www.facebook.com/amy.krambeck.campbell

Ashtyn Jeanne Mulherin {Chiari}
Langhorne. Pennsylvania
October 15, 2010
19, Complications from Chiari

Elizabeth Dinger Beckett{IH}
Irving, Texas
November 27, 2010
http://www.facebook.com/edbeckett

Nahtyia Pennington {IH}
December 30, 2010

Janet Lynn Gordon Walters {IH}
Camby, Indiana
May 2, 2011
Janet Walters was found on May 2, 2001 in her car after being told by her surgeons that there was nothing else that could be done for her. She was from Plainfield Indiana. She is survived by her husband and children.
http://flyergroup.com/obituaries/x833655808/Janet-Lynn-Gordon-Walters-of-Danville

Jennifer Rae Crutchfield {IH}
Maryville, Tennessee
May 13, 2011
http://tinyurl.com/62j4tbq

Becky Harms {Chiari} {EDS} {Tethered Cord}
Norway, Michigan
May 16, 2011
She died in her home May 16, 2011 after several years of health issues due to Chiari Malformation. She is survived by her husband and children. 
http://tinyurl.com/3kq9dtz

Michelle Marler McCollum {Mom of a Chiari Kid and Chiari Advocate}
Amarillo, Texas
May 20, 2011
Lost her 5 year battle with cancer. She had lost most of her leg and dealt with many infections in that leg on top of the cancer. Her son, Mason, is a Chiari Kid and Michelle worked long and hard as an advocate for her son and all Chiarians. She was a moderator for Chiari Connection International 
http://www.facebook.com/profile.php?id=1816625295

Michelle MacDonald {Hydrocephalus}
Oshawa, Ontario, Canada
May 23, 2011
Along with Hydrocephalus, Michelle had been fighting Septicemia and Diabetes
http://www.facebook.com/notes/michelles-journey/may-23rd-2011/211739508859914

Kristi Smith {Chiari}
Columbus, Ohio
May 27, 2011
She passed away due to complications during her 5th decompression surgery. 
http://www.facebook.com/profile.php?id=1403529350

Shannon Paige Hudson Terry {Chiari}
Carrollton, Texas
May 31, 2011
Mother of Madison, Wife of Joe. She passed from complications related to medications she was taking to manage her severe Chiari symptoms. She was 5 years post-decompression. 
http://www.caringbridge.org/visit/shannonterry

Barbara Mostow Goldenhersh{EDS}
Belleville, Illinois
June 10, 2011
Passed from complications from a blood clot in her interior jugular vein
http://www.facebook.com/barbara.goldenhersh

Beth Rieger Maier {IH}
July 27, 2011
Circumstances Unknown
http://www.facebook.com/profile.php?id=1022322582

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Aimee’s To-Do List/Recommendations for Chiari Decompression Surgery

UPDATED January 25, 2011

Remember that it takes a full month for every 15 minutes that you are under anesthesia before your body fully recovers. You might feel great a few weeks after surgery but DON’T over do it. You will get tired very easy. Listen to your body. My surgery was about two hours long.

I had my stylist shave my hair for me before surgery. Ear to Ear from the Occipital Ridge down. Don’t worry about your hair… it grows back! Mine was completely back in about 8 months. I occasionally get sad that no one can even see my scar any more because my hair all grew back.

*ASAP* Look into and see if you can get this pillow ordered and delivered in time… http://www.shop.medpillow.com/Pain-in-the-Neck-Pillow-Pain-in-the-Neck-Pillow.htm. I still sleep on mine every night. If you are a back sleeper it will help to keep your staples away from the pillow. If you are a side sleeper, then that hole supports your neck muscles while your shoulder fits perfect in the middle.

Print out the form for a temporary handicapped parking permit and have your surgeon sign it BEFORE your surgery. That way you will have it already when you get out of the hospital. Here in Texas they gave me one for 6 months. This will prevent you from having to walk so far during recovery. You get these at the same place you pay for your car registration and get new license plates.

Plan a dinner party or something for the night before. Don’t sit at home and think about what is going on the next morning. Go have fun with friends and get some good food.

Get gift cards for area restaurants so you can send visitors to go pick up food for you since hospital food sucks. I also had gift cards for the area bubble tea, frozen yogurt and gelato places (is there a pattern here?)

Take all of your electronics… you will get BORED in the hospital. I had my blackberry in ICU and used it to instant message my best friend (who spent the night in the waiting room for when I couldn’t get the nurses’ attention). Take a laptop if you have one. Make sure you remember all the chargers for each device. If your phone doesn’t allow you to tether a laptop for an internet connection… borrow an aircard from someone (if the hospital doesn’t have WiFi)

Have someone with you at all times… 24/7… round the clock, no exceptions, while you are in the hospital. I would say this should be true the first couple of days at home too.

And most important! Listen to your body! We are not all one-size-fits-nobody. We know our bodies better than they do! (They kept saying I had to stay on a “clear liquid diet” in right after surgery ICU but that overly sweet apple juice, jello and sherbet just made the nausea worse. I sent my dad out for milk. The nurses were furious but I never got sick again and was eating a Wendy’s hamburger the next day for lunch.) My body was used to drinking a lot of milk (like 3 gallons a week) because I had been taking anywhere from 7 – 22 prescriptions every single night for the past 4 years and 4 ½ months.

I will try to put this one delicately. Anesthesia basically puts our entire body & all of the internal systems to sleep. It will take a little while for some of these systems to wake up… including your digestive system. My Suggestion would be to make sure they give you some sort of “Dulcolax” or “Ex-Lax” type medication before you leave the hospital. You do not want to be dealing with those types of issues a week or so later. Straining with 15 staples in your head will make you want to pass out. *If you catch my drift

Ear Plugs… Hospitals are loud!

Make sure you have button-down or large V-neck pajamas to put on after the catheter comes out… you will want out of that dumb gown.

Don’t forget socks… preferably if you can find the no-slip kind with the nubbers on the bottom.

Oil of Olay wet-wipe face cloths. Washing your face will feel good even when you can’t get out of bed.

Take your own pillows in colorful pillowcases (so you can tell which ones are yours).

Take chapstick… hospital air dries out your lips.

And straws that bend – bending your head to drink will be an issue at least until the staples come out.

Hair Scrunchies / Rubber Bands, this will help keep your hair away from the incision, and make it easier to wash.

Scarves! This cold weather we have been having will be very sensitive on your neck / staples / incision. Especially with part of your hair missing the back of your head/neck will get cold. 13 months after my surgery and I still love my scarves.

The first few days at home, sleeping in a recliner might be more comfortable than sleeping on your bed.

Once you get home, if it is possible try and situate yourself somewhere in your home that is on the one level with a bathroom, kitchen, bed … If it is possible. Stairs after surgery will add pressure to your incision area and plus you might not be able to walk them alone. Please think of safety as well. I had a hard time walking where I was going because I couldn’t tilt my head down very far.

The first few weeks when you get home you need to be pampered. No lifting, bending over, or reaching over your head. (Nothing Heavier than a Gallon of Milk)

If possible purchase or get a loan of a shower chair for bathing and you use a hand-held shower hose to wash down your body to get refreshed. And if/when someone can help you. Have them present, if it is someone you trust they may even wash you down gently.

For your care takers…take a comfy pillow / blanket for the waiting room since they probably won’t let anyone sleep in the ICU room. Have a CHARGED phone in case she needs to send you a txt message.

When we washed my hair… I put my remaining hair in pig tails and leaned over the double kitchen sink. My mom held a towel over my incision and washed one ponytail at a time (one in each side of the sink). This will be 1000* easier if you have a spray nozzle on your sink.

Once you get home… someone can use a cotton ball and baby oil and get the sticky glue residue off of your scalp from the band-aids. Take this process slow and easy.

Oh… and if you think you are going to sneeze… brace yourself and your neck. Put your hands behind your head with your elbows in front of your face and hold on. I’m not trying to scare you… but sneezing with 15 staples in the back of your head hurts worse than the surgery itself.

Check out all the t-shirts available that talk about our condition… http://shop.cafepress.com/chiari I ordered the “too much brain to contain” shirt and wore it home from the hospital. (just make sure you don’t buy anything that says The Chiari Center Foundation… sadly, that is an organization that is being investigated for embezzlement and making money off of people who are suffering.

The drive home was very stressful. Be very careful of bumps and stuff like that.

After you have recovered, you might want to do some light exercise…but you need to be very careful about your neck and lifting things over your head. I go to this place, http://www.slo-fit.com/, once a week (the one in Plano, Texas). They know all about Chiari because I have been going there for almost a year now. It is very slow strength training to help us get back the movement in our numb arms, etc.

Save a pain pill for the office visit when they take out your staples. The staples coming out wouldn’t have been so tender but my hair had already started growing back and they were pulling the hairs out with the staples.

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Careful Who You Associate With

I am writing to you regarding an issue very close to my heart, Chiari Malformation. Chiari is a condition that I was diagnosed with in August 2005 after being misdiagnosed for 18 years. It took me four years in Dallas to find a surgeon who knew anything about the condition; a surgeon who didn’t tell me it was all in my head and to see a psychiatrist. I had brain surgery for Chiari 7 ½ months ago. While my surgery was an overwhelming success, I still have some symptoms that will never go away and some are beginning to return.

There is currently no cure for Chiari (only surgery to slow down the progression of the symptoms).

Another concern that is close to my heart is fighting those whose only goal is to fraudulently profit off of other people’s suffering.

There is a fairly popular non-profit organization that has been turned into the IRS, and the Attorney General’s Office of both Illinois & Delaware for fraud, embezzlement and misuse of non-profit status. That organization is The Chiari Center Foundation.

Today, it came to my attention, that there is a House Resolution 1454 submitted by Congresswoman Halvorson in Illinois that seeks to:

Whereas further research and awareness is greatly needed to properly and appropriately combat this condition; Whereas a turquoise ribbon with a zipper is generally regarded as the symbol for Chiari Malformation Awareness, particularly by the Chiari Malformation advocacy organization, The Chiari Center Foundation;

As someone who suffered for 23 years with Chiari Malformation and I still have some symptoms after surgery… I will NOT support this Resolution and I beg you to remove your sponsorship of it until it is correctly MODIFIED. First of all, The Chiari Center Foundation, in my mind is a fraudulent organization embezzling money from those who are suffering. Secondly, the Chiari awareness ribbon has been Purple for the past two+ decades.

Let me give you a few tidbits of information regarding The Chiari Center Foundation.

Jamie Sopczak (director of The Chiari Center Foundation) called me in November, about 3 weeks before my surgery, to discuss having me help set up a support group in Texas under the umbrella of The Chiari Center Foundation. Even though there is no cure, Jamie told me during our phone conversation, that each state based support group needed a psychiatrist and psychologist on board for those who “thought” they were still having symptoms after surgery.

As an accountant by trade, some of the things she said to me over the phone just started setting off red flags. Red flags that lit a fire under me that 8 months later I have not been able to put out. This fire led me to do some online research about Jamie Sopczak and her organization. My research also includes conversations with hundreds of people that I have connected with on Facebook who all have Chiari.

This is what I have found:

Entity Name CHIARI CONNECTION FOUNDATION File Number 65403625
Status DISSOLVED
Entity Type CORPORATION Type of Corp NOT-FOR-PROFIT
Incorporation Date (Domestic) 03/19/2007 State ILLINOIS
Agent Name JAMIE LYNN SOPCZAK Agent Change Date 03/19/2007
Agent Street Address 16019 90TH AVENUE President Name & Address
Agent City ORLAND HILLS Secretary Name & Address INVOLUNTARY DISSOLUTION 08 08 08
Agent Zip 60487 Duration Date PERPETUAL
Annual Report Filing Date 00/00/0000 For Year 2008

This is the first organization started by Jamie Lynn Sopczak which was INVOLUNTARILY DISSOLVED by the State of Illinois in 2008. A state will not dissolve a non-profit organization involuntarily unless there is some sort of impropriety taking place.

File Number:
4582771 Incorporation Date / Formation Date:
08/01/2008
(mm/dd/yyyy)
Entity Name:
THE CHIARI CENTER FOUNDATION
Entity Kind:
CORPORATION Entity Type:
NON-PROFIT OR RELIGIOUS
Residency:
DOMESTIC State: DE

REGISTERED AGENT INFORMATION

Name: AGENTS AND CORPORATIONS, INC.
Address: 1201 ORANGE STREET, SUITE 600 ONE COMMERCE CENTER
City: WILMINGTON County: NEW CASTLE
State: DE Postal Code: 19801
Phone: (302)575-0873

After the previous organization was dissolved they set up the new (current) organization. To do this, they had to relocate the registration to another state, under another organization’s name. NOT under the name of the person running the organization.

Even though their organization was started in August of 2008, they have no available financial documents and refuse to provide financial statements to anyone. Any and every other non-profit organization I have ever dealt with has had these documents freely available to anyone that asked. Their refusal to provide financial documents sends up a huge red flag. Where are their financial statements from 2008? Just because they were not incorporated until August does not exempt them from filing financials for that year.

When pressed to produce financial documents, all that was posted was a tax-exempt form such as one would use to go shopping for office supplies.

I realize we all have financial difficulties in our lives. Being misdiagnosed for 18 years and being laid off or fired from jobs due to my decreasing health; I have had more than my fair share of financial issues. Unfortunately, it must be noted that in a search of public records, Jamie and her husband have had three lawsuits filed against them for non-payment of credit card bills.

Mismanaging money in ones personal life might be a concern for so many people who have donated to an organization only to receive no help and no answers as to where that money has gone.

The address and phone number listed for The Chiari Center Foundation (Jamie’s home address and phone number) is also the same address listed for the web design company listed on their website, Spiralize, Inc. Suspiciously, nothing on their website actually works except for the DONATE button.

When The Chiari Center Foundation was first set up as a group on Facebook, Jamie had her and her husband listed as “salaried employees.” The people on the Board of Directors for The Chiari Center Foundation are all related to Jamie Sopczak either by marriage or blood.

There have been many times we know money was donated to this organization (via pictures of her holding a big check on Facebook) yet I have been unable to find anyone that has ever been helped by this organization

There have been many, many Chiarians that I have connected with that have been promised help from The Chiari Center Foundation only to be given excuses month after month of why they can’t help yet. They have promised people doctor appointments, expensive medical tests, help with hotel and airfare to see specialists, etc. I have documented records of posts on Facebook not only via links but the emailed notification of such posts as well. Some were told to start their own fundraiser and that they could keep a portion of the proceeds (but the majority would go back to The Chiari Center Foundation). Chiari is a progressive condition and some of these Chiarians saw their symptoms progress while they were waiting for The Chiari Center Foundation to come through with their promises.

The Chiari Center Foundation has also requested (and received) copies of MRIs and other medical records which violates so many areas of the established HIPPA laws that it is not even funny.

The Chiari Center Foundation actually went out and got an agreement with a high interest credit card to have their ribbon adorned on the front. The last thing, anyone who is actually trying to help those in need and suffering from a rare and misunderstood medical condition needs is a high interest credit card. Organizations who enter into these agreements get kickbacks.

There was a baby, Brayden Asher, who was born in Houston, Texas with the worst type of Chiari Malformation, Chiari III. 70% of his brain was outside of his skull. Brayden was not expected to survive birth but when he did, The Chiari Center Foundation took up money and gifts to send to Brayden and his family. After talking with the family, they only received the gifts… they didn’t receive any of the cash. After talking with those that donated, none of them received any sort of donation receipt.

Jamie and The Chiari Center Foundation has threatened to sue any Chiarian (most of her interactions are on Facebook) that does not wholeheartedly support her organization. She also deletes any post on her Facebook wall that questions anything about the organization.

The Chiari Center Foundation has copied many fundraising activities of other organizations. They have held penny drives, sold buttons, pins, and t-shirts, and have an awareness walk planned; some of these activities intentionally stepping on the foot of the other organizations.

Everything has become solely about The Chiari Center Foundation, Jamie Sopczak and her family. How can they make more money off of this “non-profit” organization?

Lastly, I will bring up the petty part of my outright disdain for The Chiari Center Foundation:

http://en.wikipedia.org/wiki/Purple_ribbon

Any normal person would not show up at a Susan B Komen Breast Cancer event wearing Green. The Chiari Ribbon was officially designated and recognized as Purple over two decades ago. There was a grandmother back in the 1990s who’s grandson was diagnosed with Chiari and she made and designed and sold purple ribbons (picture below) to help raise money and awareness.

I have connected with hundreds, nearly 1000 people on Facebook… and none of us are taking kindly to Jamie and The Chiari Center deciding to take it upon themselves to just change the color of the awareness ribbon for Chiari because “they wanted to”.

Our goal, as a Chiari Family, is to raise awareness, educate doctors, and let the world know about Chiari. There are as many people with Chiari as there is with Multiple Sclerosis. Everyone seems to know what MS is, and we are fighting for the same type of awareness for Chiari.

This type of awareness will not ever happen if we allow a Fraudulent, Embezzling Criminal and her fake organization take over with a ribbon that does not represent us.

The Turquoise ribbon with a Zipper ONLY represents The Chiari Center Foundation… it does not represent Chiarians or Chiari.

The ribbon used by The Chiari Center Foundation is only a billboard for the unethical financial practices of an organization that needs to be shut down.

Please, I beg you. Please withdraw your support and sponsorship of House Resolution 1454 until it has been modified/corrected, showing that the ribbon is PURPLE and that any mention of The Chiari Center Foundation has been removed.

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My Path, The Roller Coaster, The Journey

My Chiari Story

I am 36; well, I’ll be 37 in August.  I live alone with my dog (which is my permanent plan for the rest of my life :-) )

While I have had a few symptoms my entire life (gagging when I brushed my teeth, walking like I was drunk, facial paralysis (bottom lip is paralyzed on one side), but there were a few demarcations where I can pin point my symptoms getting worse:

The first time my symptoms started getting worse was when I was 12 years old, coincidentally the same year my parents bought me a trampoline.  I grew up in Houston and the entire neighborhood was in my back yard jumping pretty much every summer.   My mom joked that she was going to go bankrupt buying Kool-Aid and Pizza.  It was about this time my headaches started.

Then my symptoms got significantly worse my junior year of high school, on the way to school, the car I was riding in (my mom was driving), was rear ended by a car going 45+ mph and we were sitting still at a red light.  We went to physical therapy and doctors for months on end, but they never did an MRI.  I had a lot of chiropractic treatment during this time, which is a no-no for Chiarians.  They also did neck massages, e-stem treatments and heating pads.  This is when my neck pain started, my stiff shoulder muscles, and my temperature control issues began.  I still to this day can not stand heating pads… I use ice or cold water for everything.

Then in college, I guess the change of the weather and allergies (moved from Houston with 100%+ humidity year round and nothing but smog to Waco where there was almost no humidity and oxygen and every allergen imaginable) + stress of going to college my symptoms intensified.  It took me 6 years to get out of Baylor because I kept failing classes just because of my absences (had good grades but they fail you if you miss over a certain number of days).  I probably could have fought it, but because I didn’t have a diagnosis of what was really wrong with me, they would have probably just laughed at me.  I also started to have what I thought was carpal tunnel issues, heck I was a computer science major and was working on a minor in American Sign Language and working part-time waiting tables and carrying heavy trays full of food.  It just made sense; I was working my hands and wrists to death.  The director of the “Quack Shack” at Baylor was a neurologist[1] and I still do not understand why he never ordered an MRI considering I was in his office at least weekly to try a different migraine medicine (since none of them worked) and to get doctor’s notes for missing classes.

Then in 2001, I was in another car accident.  I passed out sitting at a red light and my foot came off of the brake.  While I coasted into the intersection someone was turning left in front of me.  I hit their car right by the back tire with the front right corner of my car.  I was sore for a couple of days and again, went back to a chiropractor.

This is where the symptom that finally led to my diagnosis (4 years later)… was that my arms would go numb (like someone put a tourniquet on too tight) every time I sneezed, coughed, strained, etc.  I had an MRI (#1) done in October 2004 and supposedly everything was normal.  I told many a doctor about this phenomenon and it all just either flew over their heads or passed in one ear and out the other.

In 2005, I moved from Waco to Dallas to go to Culinary School.  Another change in climate (the high pressure systems in Dallas are crazy) and I was working 730-430 in a ridiculously hostile office environment and then going to school from 530-1030pm and then staying up sometimes till 1 or 2 am to finish my homework.  My “migraines” (because I didn’t have another word for them) were in full force at this time, having at least one a week, most of the time 2-3 a week.  I started having insomnia, being so tired I couldn’t sleep.  And I noticed that the numbness in my hands had migrated to my legs and feet too.

August 7th, 2005 I rode a roller coaster at Six Flags with my cousin, Jace.  When I got off of the ride, I couldn’t lift my head.  My neck was like frozen at a 45 degree angle and I was looking at my feet.  And Jace said my face was green.  It stayed that way for 2 days.  I called a friend and she referred me to her chiropractor[2].  Little did I know that when I would arrive, I would find the person who ultimately solved my Mystery Diagnosis.  You see, she wasn’t just a chiropractor; she was about a month away from her Chiropractic Neurologist certification exam.

When I told her about the roller coaster, my 18 years of symptoms, and my arms going numb when I sneezed… she immediately said that she couldn’t adjust my neck and that since she hadn’t taken her certification exam yet, that I needed to go back to my neurologist and demand another MRI.  She also diagnosed me with something called Lordosis, which is where your neck is stick straight and does not have the natural C-shaped curvature that normal necks would.

My neurologist (after a lot of arguing and a phone call from the chiropractor) finally ordered an MRI (#2) that I had done on August 10th, 2005. The report was faxed to me (August 11th, 2005) at the same time they sent it to my neurologist.  I immediately got online and started researching and I was like OMG, I’m NOT Crazy!

MRI of the C Spine
Technique: Open MRI
History: Neck Pain and Migraines
Findings:
No abnormal signal intensity is noted in the osseous structures or spinal cord.
The cerebellar tonsils extend 0.8 cm below the foramen Magnum, compatible with a Chiari I malformation. Due to the high incidence of a syrinx with this process imaging of the entire spinal cord is recommended. Straightening of the lordotic curvature is noted in the cervical spine.
The discs appear intact and each level is within normal limits.

On August 15th, 2005, I went back for the second MRI (#3) of my entire Spinal Cord to check for a Syrinx.

MRI of the T Spine
Technique: Open MRI
History: Neck Pain, Chronic Headaches, Arm and Hand Numbness
Findings:

Small anterior osteophytes are noted on multiple levels.
The vertebral heights and disk spaces are well maintained. No abnormal signal is noted in the osseous structures or spinal cord.
No evidence of a disk herniation or spinal stenosis is seen.

On Friday August 18th, 2005, (the day after my 31st birthday) the results of the second MRI came back with no mention of a syrinx and I had appointments scheduled with both my neurologist[3] and my soon-to-be chiropractic neurologist for the next day.  My mom drove to Dallas to go to my appointments with me.  First was the neurologist, forever to be known as “The Brick Wall”.

“TheBrickWall” was 30 minutes late to my appointment and when we finally got back to his office he proceeded to pull every disease/condition known to man out of his southern-most orifice to explain my symptoms as something OTHER than Chiari.

My migraines are “hormones”, the normal-every-day headaches are “too much OTC-medicine withdrawal”, the numbness in my arms and hands is “carpal tunnel”, the eye-twitches and the ringing in my ears and hearing loss is “too much aspirin”, the stiff neck is from, of all things, “stress”.  Never mind that I never took OTC medicines and NEVER took aspirin.

He basically pointed to my 8mm cerebellar tonsil herniation and said… “See that part of your brain that is hanging down right there? Yeah, well it isn’t supposed to be there.  Deal with it because nothing can be done about it.”

And then we went back to the chiropractic neurologist.

She compared my MRI films to the X-Rays she had taken and compared them slide by slide. She explained which nerves attached where on the spine and why I was feeling what I was feeling. She said I had a slight deterioration of my C3 and C4 discs since my Chiari was blocking the movement of C1 and C2 which is what “normal” people use to rotate their head from side to side, and that my body had just naturally started using C3 and C4 for rotation. This can also explain stiffness in the neck. When I sneeze, the rapid movement of my head forward compresses the spinal cord and cerebellar tonsils together causing the numbness in my arms. In a little over an hour, with charts and graphs, and with see-thru pictures of my insides… she disproved everything “TheBrickWall” had said.

The following Monday, August 22nd, both of my parents drove up to Irving and we had my first neurosurgeon[4] consultation.

10:15am, Sign in at the doc’s office, fill out forms, sign release forms since the damn HIPPA laws and the dorks at the MRI place sent them the 1st report but not the 2nd, sit down and wait…

and wait… and ask what the hold up is… he’s stuck in surgery, he will be back soon…  and wait…

About NOON, we finally got to see the neurosurgeon (Nickname “TheCuteOne”). He asks me about my migraines, my numbness, my symptoms, and really listens to what I had to say. For once in this whole crazy shebang, I had a doctor listening to ME! He pulls out the MRI (and the X-rays sent with me by the Chiropractic Neurologist I had seen the week before) and shows the Chiari and starts drawing little happy faces and lines on it. The fact that my Chiari is only 8mm was a good thing and he said that it just didn’t look like they were crowding each other that bad. It was possible that the “hole” that the cerebellar tonsils fell in is bigger than “bigger than normal.”

He says that he wants me to go get a second opinion (maybe a third if 2nd doesn’t agree), but he just didn’t think my condition was bad enough for surgery at this time. He wants to talk to the other doctor if Mr.2ndOpinion thinks I need surgery, and he wants to send me to a new neurologist to start a brand new pain medication and treatment plan to see if we can treat my Chiari without a knife and a zipper-scar.

After he talks to me, “TheCuteOne” asks my parents if they have any questions. My mother brings up the 2nd MRI that I had done last week and the absence of a syrinx. He flat out tells us that had my 2nd MRI from Tuesday resulted positive, and that I had a syrinx, then instead of pain medication and new doctors… that our conversation today would have been more along the lines of hospital gowns, designs shaved into the back of my head, and what color stitches I wanted in my zipper.

He said that the Chiari surgeries were “FUN” and that you get to go in there and see all kinds of neat stuff… but he frankly didn’t think I needed it yet. He’s a brain surgeon, he says he does necks and backs for “FUN.” Then he seals the deal by saying, in front of my parents, “if you were my daughter, I wouldn’t do surgery.”

This was the first neurosurgeon I saw for Chiari and I was a little put off by his suggestion that my surgery was something he did for fun, like waterskiing. Dr. Cwikla is also the one who referred me to “TheDrugDealer” who made the first six months of my life as a diagnosed Chiarian a living Hell.

Then on August 24th, we saw the second neurosurgeon[5]:

We got there and they handed me a huge stack of paperwork to fill out. By page 2 my right hand was numb and by page 5 my right hand and elbow were HURTING.

A Physicians Assistant came in and asked questions, did the blood pressure, weight (gasp), the “follow my finger with your eyes,” etc. and then in walks “TheAccentMan.” He’s tall, had curly dark hair and a VERY strong accent. I wish I could tell you what kind of accent it was, but I have no clue. He starts out telling me that he usually does surgery when the fallen tonsil is even with or past the C1 vertebrae. Mine is touching the top of C1 so I am in sort of a limbo.

He agreed with “TheCuteOne,” that it didn’t look like things were too crowded in there *but* he seemed a little more concerned about the involuntary twitching and tingling and numbness in my arms… the times when it is there and I hadn’t just sneezed. He said that he wanted to see an MRI of my brain before making any big decisions on my care or the plan. I mentioned that I had an MRI of my brain last October but not only was he not impressed about the fact that it was done 10 months ago, he also didn’t like Open MRIs. He says he’s going to send me to a regular MRI for a brain scan and he would give me a prescription for valium. He said “take one when you leave home and take the other when you see The Machine.” My stomach starts singing “rolling rolling rolling, keep them doggies rolling.”

He then starts vividly explaining the surgery to me and how painful it is during recovery after he slices all the muscles in my neck and how I probably wanted to avoid the surgery if it wasn’t absolutely necessary. I was sitting on the doctor’s table and the more he explained about the surgery the weaker and more nauseated I felt. I had that hot flash feeling like I was going to pass out and I quickly laid down on the table. At least, I had a table to lie down on. My mother, sitting upright in a chair next to a wall with my dad at her side started felling the same way. Both of us were just about ready to pass out when he finished his story.

So, we know that he probably doesn’t think surgery is the answer… but we also know that there are enough symptoms for him to want to look at things from another angle before making a decision.

Flash Forward: What I have learned is that this doctor hasn’t done a Chiari surgery since 2005 because he thinks they are useless and that Chiari is nothing and he basically uses that vivid story about the surgery to scare off those of us who come to him for a consultation.  Not to mention only surgeons who have no clue what the hell they are doing cut through the muscles in the neck for a posterior fossa decompression.

So, on September 1st, well, we went to my follow up appointment with “TheAccentMan.” He said that the reason he wanted to see the MRI (#4) of my brain was because with the C-Spine MRI that he couldn’t really tell exactly how far my tonsils had fallen. With the brain MRI it was clear as day. It has fallen down and is touching the top of my C1 vertebra.

He told us that he usually does surgery when the tonsil has fallen past C1, but since mine was just touching, and I was still able to work and go to school that my symptoms were borderline and not bad enough for surgery. “TheAccentMan” reinforced that it was an easy surgery for him but would be immensely painful for me. He also suggested follow-up MRIs in a year to see if the tonsil had fallen anymore.

I am slightly comfortable that both neurosurgeons that I have agreed that I’m not bad enough for surgery. I am, still a little concerned about how “borderline” or “not bad enough” my symptoms are because they feel a lot more than borderline to me. I am going to see a new neurologist on Tuesday. I am going to be open to what she has to say and she if there is any thing we can do to make me feel better. I’m tired of feeling like crap. I plan on trying to give her 6 months to work with me and for me to see some sort of improvement. If not, I have not completely ruled out the surgery route.

On that note, I have heard people in my support group say that you can send your MRI films to the specialists at the Chiari Institute and that they would review your films (for free) and tell you if they can help you or if its even worth it before you spend the money and time to hop on Amtrak and spend 49 hours traveling to Great Neck, New York for a consultation.

So a week or so later, my parents drive back up to Dallas with me to go see “The DrugDealer” *.  This would be my second neurologist[6] since I basically fired the “TheBrickWall” for being dull and clueless.

I had my appointment with “TheDrugDealer.” She said “TheCuteOne” had called her last week to talk about my case and she wanted to hear the entire story from me. She asked about the numbness, the headaches (migraines for lack of a better word), visual and audio disturbances. She listened to my heart, hit me with that reflex thingy, poked me with a thumbtack, had me follow her finger, and then sent me down the hall where they took SIX vials of blood.

She also sent me home with a new prescription for Relpax and added four new drugs to the concoction that I was already taking. The original cocktail included: Aviane for Hormones, Lexapro for Anti-Anxiety, Nadolol (given to me by “TheBrickWall”) a beta-blocker/Migraine Prevention, and Relpax for Migraine Pain Relief.

To this mix we are going to add: Topamax (Anti-Seizure/Migraine prevention), Naproxen (Anti-Inflammatory) for muscle spasms, Flexeril a muscle relaxant, and Medrol* (Anti-Inflammatory) also for muscle spasms and numbness.

I’m not sure what all they plan on doing with the 6 tubes of blood, but that was at 10:15am and I was still dizzy and lightheaded that afternoon at 4pm. I was scheduled to go back to have a peripheral nerve test (electrodes and needles) in two weeks. They called and set up appointments for a one-night sleep study and e-stem treatments. It is a good thing that this new doctor is just minutes from work (hostile work environment, doctor’s appointments were not looked favorably on) with this many new appointments.

*Ended up not having this prescription filled as I am allergic to cortisone and all cortico-steroids… an allergy this “doctor” knew about when she wrote the prescription.

** Looking back, my mom and I realize now we should have turned around and walked out during our first appointment when we realized who the doctor was.  You see, we rode the elevator up with a 40something year old blonde lady who had on the EXACT same dress that my mom wore to her 20th high school reunion in 1989.  Keep in mind this was 2005.  About 20 minutes later, this same lady walked in as my new doctor.

About a week later I started the e-stem treatments.  They were these little electrode things they put on my neck and shoulders and would shock me for an hour.  These didn’t help anything except for my exhaustion.  At this point, and with all of these doctors’ appointments, I was still trying to work full time and go to culinary school at night.  These e-stem treatments gave me an opportunity to go take a nap in a recliner for an hour two times per week in the middle of the day.  On the flip side, the e-stem treatments made the numbness in my arms and hands worse.

The neurologist’s office called with my blood work results to tell me that I had Anemia due to a Folic Acid (B9) & B12 Deficiency.  So I had to start taking those to vitamins on top of the prescription drugs she had prescribed for me.

I was also scheduled for a test called an EMG (An electromyogram is a test that is used to record the electrical activity of muscles. When muscles are active, they produce an electrical current. This current is usually proportional to the level of the muscle activity. An EMG is also referred to as a myogram.)  It supposedly came out positive for Polyneuropathy, although they only did the electrode part of the exam and not the needle part.

On the night of the sleep study, I fell in the parking lot of the hospital.  I landed very hard on my left knee and I was carrying a lot of stuff (suitcase, school backpack, umbrella, purse, etc).  After securing an appointment with a new primary care doctor, he sent me for an MRI on my knee (#5) and shoulder (#6).  It turned out that I had just sprained my shoulder during the fall, but I actually busted the bursa sac, in my left knee, a condition known as Pre-Patellar Bursitis, and since I am allergic to steroids, my only option was to have knee surgery to have the sac, scar tissue and excess liquid removed from my knee.  I had never had surgery before and then all of a sudden the possibility of having two different surgeries appeared in my life within about two months.

Even though I complained numerous times about the sheer number of drugs the neurologist had me on, how the drugs made me feel stupid, how the drugs made me unable to function and started my vertigo-like symptoms, she refused to listen and insisted that I continue to take them as prescribed.  I set up another appointment and my parents drove back to Dallas to go with me, because we had to make her realize that I not only did she have me waste 6 weeks, with these drugs, I felt worse than I did the day I was diagnosed with Chiari.

This appointment brought to light what was really going on.  She was doing everything in her power to explain away every symptom I had so that it wasn’t the Chiari that was causing any of my issues.  And she did that by labeling me with six different diagnoses, each less important than the one before.

Primary Diagnosis: Sensorimotor Polyneuropathy
Secondary Diagnosis: Carpal Tunnel Syndrome
Tertiary Diagnosis: Migraine Headaches
Quaternary Diagnosis: Mild Obstructive Sleep Apnea
Quinary Diagnosis: Snoring Disorder
Senary Diagnosis: Arnold Chiari Malformation

So some how a seemingly healthy person recently diagnosed with a brain malformation that I have had my entire life… now walks out of a neurologist with 5 more “conditions”.  My suspicions were getting even more suspect about this doctor’s qualifications.

So, what does all this mean? Your guess is as good as mine. Basically what I gather is I have nerve damage in my peripheral nerves. The signals my arms, hands, legs & feet are sending my brain just aren’t getting there.

First, “TheDrugDealer” took me off of the Topamax and Flexeril and put me on Lyrica for the Polyneuropathy, but she wants me to up my dose of the Naproxen.  She also extended the prescribed number of E-stem treatments (ignoring the fact that they were making my numbness worse).

When I said that I felt like I was losing my balance and that my neighbor has been making comments like “been walking long?” or that I’ve been tripping over my own feet, she said that made perfect sense with the Polyneuropathy.

Second, I am supposed to go buy some wrist braces for the carpal tunnel (or find the ones I already have) and start wearing them as much as possible, but mostly during when I sleep.

Thirdly, I was given a new prescription for Zomig (useless) for my migraines. I was taking Relpax, but the last migraine I had, the Relpax didn’t seem to help much. I wonder if it was just in combination with all the other drugs I was on.

Fourthly, apparently when I took the sleep study, I had quite a few times where my breathing slowed to next to nothing. I am being referred to an Ear, Nose and Throat specialist to make sure there is nothing obstructing my breathing while I am sleeping. She also said the best thing for this was to lose weight. Great! That’s the last thing I need. Now instead of my mother being on my back about being too fat, now I have “TheDrugDealer” telling me the same thing.

Fifth, I snore! There. I said it. Although, I know there are a few people out there who could have already told me that. In fact, when I was four years old… I woke my grandmother up in the middle of the night to ask her if she would teach me how to snore the next morning. Between Nana, Peep and my Great Aunt Ruth I had the three best snore-teachers in the world. She suggested that I go buy some of the Breathe Right strips to use while I sleep.

While I am on the subject of sleeping, I am also being sent back to the Sleep Lab for an extended Sleep Study. Apparently in a normal sleep cycle, one takes approximately 90 to 200 minutes in the other stages of sleep before diving into the REM stage (dream stage) of sleep. During the sleep study I went to back two weeks ago…. I took NINETEEN MINUTES. The weird thing about that is, I woke up feeling horrible, like I hadn’t slept at all. I would have sworn that I had lain there the entire night halfway between awake and asleep. And don’t ask me what I dreamed about because I have absolutely no freaking clue. She said this is a condition known as Narcolepsy and that is what the extended sleep study is supposed to test for.

And lastly, Arnold Chiari… The diagnosis that started this all… Again, I’m told that it has nothing to do with anything. That it’s become so common that it’s no big deal. That still doesn’t explain my overly-sensitive gag reflex, the ringing in my ears or the fact that I can’t hear when I swallow or that the numbness in my arms and legs multiplies tenfold when I sneeze.

About a week later I went to the Ear Nose and Throat doctor for the Snoring Disorder and after the guy telling me that I had lost a significant amount of my hearing in both ears and after running a tube down my nose, I was diagnosed with Acid Reflux and was given another prescription for Nexium, and then another two weeks later I had the second sleep study to test for narcolepsy, which I failed miserably.  And by miserably I mean that not only did I not have narcolepsy, the sleep study test for narcolepsy is one of the most miserable things you will ever live through.

I got there about 5:45am and she asked me what time I had woken up. I said about 4:45 and she said ok… you can start your nap at 7:00. She hooked all the monitors and stuff up to me and it was only 6:20, I had to sit there for 40 minutes and wait until I could go to sleep. At 7:00 the lady told me I could go to sleep.

So, I turn over and close my eyes and go to sleep and then WTH? 7:16 she woke me up. I was like excuse me? She said you’re only going to take 4 15-minute naps. I was flabbergasted and exhausted… “You are kidding right? How come I wasn’t told this? I thought I was coming to sleep all day”

So I had to wake up at 7:16 and she said I had to stay wide awake until 9:00am. Can you say miserable? Watching TV and the clock waiting for time to go back to sleep… At 9:00am she said… ok, time for your next nap. This time she woke me up at 9:22am. Ok, this is getting really annoying.

After rolling around in the bed, sitting up, laying down, walking around, sitting up, holding my head in my hands and thinking what in the world have I gotten myself into.. I finally got to take another nap… you guessed it… at 11:00am. Actually she came in a little early and I think I got to lie down at 10:51… and she was waking me up at 11:02.

Again at 12:52 I took one last nap and at 1:13pm I was woken up for the last time. They took the monitors off of me and I drove home.

Apparently this test was to see if I have narcolepsy. I was given 20 minutes to fall asleep, if you don’t fall asleep within those 20 minutes you have to get up and try again in two hours. If you do fall asleep you get to sleep for 15 minutes… IF you DO NOT make it to REM (dream) sleep; if you go into REM sleep, they wake you up immediately.

Ok, let’s have a prescription recap:

  • Aviane
  • Lexapro
  • Nadolol
  • Relpax
  • Topamax (removed at 6 week appointment)
  • Naproxen (double dose at 6 week appointment)
  • Flexeril (removed at 6 week appointment)
  • Medrol (didn’t fill due to cortisone allergy)
  • B12
  • B6
  • Folic Acid
  • Lyrica
  • Zomig
  • Triglide (from primary care doctor for high triglycerides)
  • Nexium (from ENT doctor for acid reflux)
  • My migraines were getting worse, the drugs were out of hand, I was unable to function (as my dad said, I wasn’t living, I was subsisting.  And then I was forced out of culinary school and forced to take a medical leave of absence.  My hands were now so numb that I didn’t even feel it when I sliced my fingers open cutting carrots and I had lost body strength on the drugs that I dropped a huge pot of boiling water and burned a couple of my classmates.

    Thanks to a nosey culinary school teacher… who turned in the paperwork to have me withdrawn from her class with an F (bad attendance) before my leave of absence paperwork had been processed… the housing department got wind of the fact that I wasn’t in school.  Even though I had paid (through student loans) thru the end of the quarter, they tried to evict me.  My mom ended up spending several hours on the phone with the president of the school explaining to him the finer points of the law and I was allowed to stay for four more weeks.  So like I wasn’t already going thru enough with the health issues, the drugs, the hostile job, etc… how I had to pack and find a place to live that I could afford.  My work salary was barely paying my car payment and my prescription drugs and now I had to find money for monthly rent instead of it being included in my tuition.

    I went back to the neurologist after being forced out of school to get a doctor’s note for the medical leave of absence.  She left me waiting in the room for over an hour and a half with a horrible headache that I was now on day 3.  And then when she did show up, I only saw her for 15 minutes.

    I told her that the Lyrica she had me on for the numbness and Polyneuropathy was helping but something was causing my migraines to get worse. I also said that the most current migraine medicine taken for the actual attacks, not the daily preventatives, Zomig, was useless. Excedrin Migraine, a Diet Mountain Dew and a Zinger worked better than Zomig did. Not only were my migraines getting worse, they were also taking on a life of their own and setting up a permanent schedule that consisted of ice picks in my temples every Sunday, and then moving behind my left eye and causing nausea on Mondays and Tuesdays.

    She gave me a new prescription for Axert, a new medicine to try on my migraine attacks, a new daily medicine for Keppra that will hopefully help prevent migraine attacks, and three days of Vicodin to hopefully knock out this current migraine and to see if it will help break the cycle.

    Ok, let’s have a prescription recap:

  • Aviane
  • Lexapro
  • Nadolol
  • Relpax
  • Topamax (removed at 6 week appointment)
  • Naproxen (double dose at 6 week appointment)
  • Flexeril (removed at 6 week appointment)
  • Medrol (didn’t fill due to cortisone allergy)
  • B12
  • B6
  • Folic Acid
  • Lyrica
  • Zomig (didn’t work but kept prescription as another alternative
  • Triglide (from primary care doctor for high triglycerides)
  • Nexium (from ENT doctor for acid reflux)
  • Axert
  • Keppra
  • Vicodin (AGAIN, with prescribing drugs I am allergic to! Vicodin is codeine, can’t have that)
  • I some how made it to December, moved into a condo, had knee surgery and made it to 2006.  This was by far the longest 4 months of my entire life.  Not only was I broke, some nights eating a canned vegetable and a glass of milk for dinner, I was spending $400 a month on prescription drugs that made my life a living hell.  I had also succeeded in gaining 75 pounds in 6 months on all of those drugs.

    In January, after a dentist appointment where the dentist was way too rough on my neck, I had a 5 day Chiari headache of uncontrollable proportions.  Desperate to try anything, I found a sample pack of Biofreeze in our office first aid kit.  Biofreeze is supposed to be for joint and arthritis pain, but I didn’t care.  I rubbed it on my forehead and the back of my neck and for the first time in over 120 hours my headache was bearable.  This discovery is what allowed me to even survive the next three years.

    It was after this round of uncontrollable pain that I broke down and made an appointment with neurosurgeon[7] number three. This is the guy who sent me for another MRI (if you are counting this makes #7). The radiologist for this MRI only measured my herniation at 5mm which according to this latest neurosurgeon didn’t qualify as Chiari but only Cerebellar Ectopia.  That apparently all of my symptoms were “in my head” because of the fact that I had been researching by myself online regarding Chiari and that I really needed to go see a shrink.  He did, however, agree after seeing the spreadsheet with the drugs I listed above that I needed a new neurologist and had to be tapered off of all of those drugs.

    In mid-January 2006, I called and requested all of my medical records from “TheDrugDealer”.  It took two trips over there before they finally had them ready for me.  And man was a furious when I sat down to read her notes.  Apparently, I didn’t have enough drugs to take and she had THREE other drugs she wanted to give me… but “patient has obviously refused to tell me she is pregnant and these prescriptions can not be taken during pregnancy.”   I was NOT pregnant! Yes, I had gained 75 pounds in 6 months but that was from all of the prescription drugs she had me on.

    I saw the new neurologist[8] in February 2006.  After my knee surgery my 2006 New Year’s Resolution was to fire “TheDrugDealer” and finding a new doctor who would work on my treatment plan with not so many medications.

    After waiting a good 45 minutes past my appointment time for “TheTaper” to even come into the exam room, he sat there while I basically recited everything that I had to write down on the medical forms I turned in to the front desk.

    He had me do the normal neurological exam stuff, like making fists and flexing muscles, holding arms in a position while they push on you while saying, don’t let me push.

    Again, I was told that I had basically gone from a fairly healthy person to having 6 different conditions and that Chiari has nothing to do with it. This is frustrating to me as I read every day on my support group that neurologists don’t know anything about it and that the one test, the cine MRI that I need to test for spinal fluid flow… I can’t find a doctor to order it for me.

    BUT, as I said I’m not fishing for surgery, I just want to feel better, and I really wanted to get off of some of these drugs, so I ignored the fact that he said Chiari doesn’t cause any symptoms at all and waited to see what he would do with my drugs.

    Then we sat down and talked about my medicines. Yes, internet, I went to and paid “TheDrugDealer” way too long and by the time the 4 months had past, this is how many drugs she had prescribed. Some of these drugs I had since stopped, but this is the total list since August.

    Yes, internet, that is an Excel Spreadsheet. Yes, internet I have formulas set up in Excel to tell me when to call and refill my drugs. Yes, internet I am a geek. Yes, internet, I wouldn’t be able to function without Excel… this is part of my OCD.

    The first thing “TheTaper” said was that we needed to re-evaluate my medicines and streamline them. That, my friends, was the best thing I have heard in 4 months.

    Ok, lets go down the list:

    The Aviane is my birth control pills. They help with the hormonal migraines that I get and help keep me partly sane. No need to change.

    There are three ways to treat migraines, blood pressure medications such as the Nadolol (that “TheBrickWall” prescribed), epileptic medicines such as the Lyrica and Keppra and Topamax, and anti-depressants such as the Lexapro.

    The first thing he tells me is that Keppra and Lyrica are in the same family of drugs and there was no reason to have me on two drugs designed to do the same thing. Um, DUH! Then, instead of having me pick one of the two, he took me off of both (Tapering (Hence, the nickname) the Lyrica down to one pill a day for a week and then quitting) and adding Zonegran because unlike the Lyrica and Keppra, Zonegran has been associated with Weight Loss.

    Then he increased my dosage of the Lexapro and told me to start taking it in the morning instead of at night. He said that this drug could possibly be causing the Insomnia problems that I have been having.

    We decided of the three migraine-onset medicines, that I would stop taking the Axert and the Zomig and that he would give me a new prescription for the Relpax.

    The Nadolol is a Beta-blocker (blood pressure medicine) and I am supposed to “Taper” myself by reducing the dosage by half for two weeks and then again by half for two weeks before stopping. This is one of the drugs that I had tried to quit cold-turkey in the past and that I had horrible side effects from doing so.

    The Flexeril was one of the drugs that I had stopped taking, mostly because I was physically enable to function on the dosage “TheDrugDealer” had me on. Instead of taking 3 pills per day, now I am going to start taking one at night. This will help with the neck and shoulder pain and will also help me sleep.

    The Topamax and Naproxen were drugs that I stopped taking back in October, as I could not function while taking them and were the culprits that caused my fall and subsequent knee surgery two months ago.

    The Triglide (high triglycerides) and Nexium (acid reflux) are both medications that I have started since my diagnosis. Both of these medications treat conditions that were apparently caused by the wonderful cocktail of drugs that I was on. Hopefully as I “Taper” off all these drugs, I will be able to get rid of these two also.

    The Mobic is the anti-inflammatory drug I took leading up to and just after my knee surgery. I have been off of it since I had my stitches out.

    The Vicodin (aka Hyrdocodone) was one of the two drugs that “TheDrugDealer” prescribed for me that I was actually allergic to. She also attempted to give me a cortisone-steroid pack back in September. It for this reason I would like to give a heart-felt thanks to observant Pharmacists who inform patients about possible allergic reactions, especially BEFORE the prescription is filled and paid for.

    And lastly, the B12 and Folic Acid. These were two vitamins that were showing deficient (along with a high white blood cell count) in my first blood test after taking the Topamax for 7 weeks. “TheTaper” said he would run a complete panel of blood tests when I go back in 6 weeks for my follow-up. Depending on those results, I may get to quit taking these two vitamins and the Triglide.

    Lastly, he told me to go buy wrist braces for both of my hands to help with the numbness in my hands that is caused by the carpal tunnel. I bought some and tried to wear them while watching TV when I got home and I couldn’t even stand to leave them on for the 30 minutes that Two and a Half Men was on.

    I asked about how my arms and hands go numb when I sneeze, cough, yawn or stretch, to which he basically said… “That it was possible that was a symptom of the Chiari, but to just learn to live with it.” This frustrates me since, aside from my migraines, the pain inflicted on my arms and hands when I cough, sneeze, yawn or stretch is horrendous and the exact symptom that caught my Chiropractor’s attention, which led up to my diagnosis in the first place.

    So, for those of you doing the math… I went from 15 drugs and two vitamins down to SEVEN drugs and two vitamins. That sounds like a massive improvement to me. I will also hopefully have a little less stress in the financial department as those 8 drugs that I am no longer having filled will lower my monthly prescription bill from $340.00 to $200.00.

    Six weeks later, we returned for a follow up appointment with “TheTaper” and my parents drove up to Dallas to basically tell my doctor “NO MORE DRUGS.”

    Granted, he did lower my prescription count from 15 to 7 six weeks ago, but I still feel like crap. I had no energy, I was severely depressed, and I had insomnia since the last week of January. Considering I had approximately 3-4 hours of sleep per night for 2 1/2 months, it is no wonder why I felt so bad.

    The problem I have with taking medicines… is I was under the impression that they were supposed to make you feel better, not worse. Here I was, 7 months and 27 days after my diagnosis and I felt worse now than I did before I even went to the doctor and now I have a beautiful 4-inch scar going down the middle of my knee to boot.

    I really didn’t want to go to this doctor’s appointment, but since my dad had already taken the day off work, I guess I had to. It was really annoying that I was nearly 32 years old and my parents were still going to my doctor’s appointments with me, but I guess that is just the nature of the beast with my condition, especially when the doctor’s ignore your symptoms and how you feel and just give you drugs.

    Ok, let’s have a prescription recap:

  • Aviane
  • Lexapro
  • Nadolol
  • Relpax
  • Topamax (removed at 6 week appointment)
  • Naproxen (double dose at 6 week appointment)
  • Flexeril (removed at 6 week appointment)
  • Medrol (didn’t fill due to cortisone allergy)
  • B12
  • B6
  • Folic Acid
  • Lyrica (removed by Taper)
  • Zomig (didn’t work but kept prescription as another alternative
  • Triglide (from primary care doctor for high triglycerides)
  • Nexium (from ENT doctor for acid reflux)
  • Axert (remove by Taper)
  • Keppra (remove by Taper)
  • Vicodin (AGAIN, with prescribing drugs I am allergic to! Vicodin is codeine, can’t have that)
  • Zonegran (to replace the Lyrica and Keppra)
  • Skelaxin (to replace the Flexeril)
  • Two months later (May 2006) we set me up with another neurologist, “HeadacheGuru”.[9] I even blogged after this appointment that I felt we had finally made a breakthrough, but with Hindsight 20/20 vision I realized I was just tired of fighting.

    My appointment with “HeadacheGuru” was by far the most productive doctor’s appointment I had since I was diagnosed with Chiari nine months earlier.

    We scheduled retests of my MRIs for Brain and C-Spine (#8 and #9). We ran blood work and are rescheduled my nerve conduction study.

    “HeadacheGuru” wanted to start over. For once I hear someone say, ok, so you have had three neurosurgeons tell you that you are borderline. Let’s see why they think you are borderline. Hmm, well you have all these other diagnoses that if are valid, and you have the Chiari Decompression surgery, will not be cured and then you will be pissed. Um, yeah! I would. The problem was that he didn’t see any direct correlations to believe all the original diagnoses. He saw a lot of lose ends. Lose ends that if they could be tied to something else, could explain a lot about the Chiari and anything else that might be wrong with me.

    The problems he saw were:

    First of All: I was only 31, I’ve never been exposed to heavy metals, don’t have diabetes, don’t have thyroid problems, there is absolutely no reason for me to have Polyneuropathy. The Polyneuropathy was diagnosed last October by “TheDrugDealer.”

    This was the biggest red flag for “HeadacheGuru.” Numbness and tingling in the extremities are a symptom both of Chiari and Polyneuropathy… but they are two separate conditions. Polyneuropathy means nerve damage; Chiari is because of high cerebrospinal fluid flow pressure and compression of the brain stem. If the numbness is indeed from the Chiari, the Polyneuropathy tests that he performs will come back negative. After looking at the numbers from my previous test, he didn’t think it was a true positive and wants to do the test himself.

    This test was never performed while I was a patient of his or his PA’s.

    Secondly: Carpal Tunnel: probably a valid diagnosis considering my extensive computer use (and the extra use of my hands in college doing sign language), but… that doesn’t explain the numbness in my legs and feet. A few nights before this appointment, I had like a foot/toe cramp in my left foot, except that it didn’t hurt. It was just like my smallest three toes were just paralyzed and frozen straight out and I couldn’t move them.

    Thirdly: My headaches. Diagnosed as migraines but from the headache journal that I had to fill out the past week, it seems like my headaches have a lot to do with pressure, especially since I experienced relief from Biofreeze. And the location and that they move and all. After the other tests are completed we are finally going to do a cineMRI to test for pressure.

    Another promise & test was never performed while I was a patient of his or his PA’s.

    I am going back on Zonegran now that all of the other drugs are out of my system. I am also going to start another new drug, Namenda, (an Alzheimer’s drug) as an off-label use for migraine prevention. He said that this new drug should not have many side effects, because after all it was designed and formulated for 80yr old AD patients.

    Another aspect of my migraines and pressure, is that yesterday, after working in my yard for a couple of hours, I had the first nose bleed I have had in probably 10 years.

    The “HeadacheGuru” wants me to consider Botox injections which are now being widely used to help with Chronic Daily Headaches. The problem here is that it usually takes 6 – 8 weeks to get an answer from insurance companies on whether or not they will cover it, and 90% of the time they deny the claim. Botox treatment costs about $2,000 every 3 months.

    And Lastly: He wants to see the new MRIs compared to the ones that I have been carrying around with me for the last 9 months. If the tonsil as fallen, exactly how it is hanging, and if I possibly could have developed a syrinx which would better explain the drastic worsening of the numbness and headaches.

    Also, after reading about Chiari on the many websites and emails in the support group, it looks as though most people are given two measurements, since there are two tonsils that can herniate thru the foramen magnum. After the original MRI, I was only given one measurement of 8mm. We would like to know where the other one is: is it in its normal position? Has it fallen and wasn’t noticed? Is it lying across the foramen magnum blocking fluid flow?

    Then he said after we get the smoke cleared, the tests redone and a new starting ground that he would also be sending me back to “TheTaper” for treatment with my Obstructive Sleep Apnea, as sleep disorders are his specialty.

    There was a lot talked about in this appointment and I wish I would have taken a tape recorder to remember it all.
    Ok, let’s have a prescription recap:

  • Aviane
  • Lexapro
  • Nadolol (removed by Taper)
  • Relpax
  • Topamax (removed at 6 week appointment)
  • Naproxen (double dose at 6 week appointment)
  • Flexeril (removed at 6 week appointment)
  • Medrol (didn’t fill due to cortisone allergy)
  • B12
  • B6
  • Folic Acid
  • Lyrica (removed by Taper)
  • Zomig (didn’t work but kept prescription as another alternative
  • Triglide (from primary care doctor for high triglycerides)
  • Nexium (from ENT doctor for acid reflux)
  • Axert (remove by Taper)
  • Keppra (remove by Taper)
  • Vicodin (AGAIN, with prescribing drugs I am allergic to! Vicodin is codeine, can’t have that)
  • Zonegran (to replace the Lyrica and Keppra)
  • Namenda
  • Skelaxin (to replace the Flexeril)
  • So much for thinking I was finally on a path with the “HeadacheGuru” as I never saw him again after that appointment in May 2006.  He pawned me off on his physician’s assistant[10], who spent the next two years trying to convince me that I wasn’t in pain, that I was depressed.

    I went in for an appointment about every 2 months where she would change the dosages of the medicines above and add an antidepressant.  I was already taking Lexapro but that wasn’t good enough… because you know Chiari is nothing and I was just depressed.  My appointments with her felt like she was a wanna-be psychiatrist and our conversations were about my mental health and not the fact that I was miserable on all of those drugs.

    We tried Wellbutrin which made me nauseous, we tried Zoloft which made my heart race and then came the one that could have ended it all.  In November 2006, she gave me a prescription for Cymbalta.  I took for two nights and then I started having a reaction to it… a serious reaction.  I was hot, sweaty, and nauseous and I couldn’t talk.  I took off all my clothes and covered myself with towels I had soaked in cold water.  I waited a few minutes and then I called 911 and the dispatcher had a hard time understanding me but they sent an Ambulance anyway.  It turns out that I had a pharmaceutically-induced Transient Ischemic Attack… otherwise known as a mini-stroke.  The ER doctor suggested that I wean myself off of all the medicines I was on and to find a new doctor.

    In February 2007, I was let go from yet another job because of my “lack of performance” which was directly tied to my health.  Except for the lack of income and having to pay for Cobra, losing that job was the best thing that had happened to me in the past 22 months.  I worked temp work and contract positions for about 6 months.

    Then in August 2007, I found the best job ever that it can only be described as Divine Intervention.  I found out within the first week that they were all for us going to doctor’s appointments and taking care of ourselves first.  They said “because an employee, who can take care of the important stuff, will also take care of the work.”  My beloved Nana died my third week there and even though I was a contract employee… they allowed me to take off and spend the entire week with my family.  The only problem was that I was still paying for Cobra and for the most horrible excuse for a health insurance policy (http://www.yelp.com/biz/src-columbia#hrid:L_3UkG1-iYF4ATS73WBs4Q) that was offered by the temp agency.

    In February 2008, I was converted to a full time contract employee with Plano Data and it wasn’t long after this that I found out that the President of the company’s brother has Chiari and had surgery in 2002.  After he survived the surgery (got meningitis while in the hospital), he has had a wonderful result and is able to live without Chiari interrupting his life on a daily basis.  One could only hope.

    I waited about 16 months before trying to find a new doctor (mostly because I was waiting for my new insurance).  I tapered myself off of all the above medicines except for the Relpax which I took when I had a headache along with Biofreeze rubbed all over my forehead and neck.  In March of 2008, I decided to try again… starting with an appointment with a neurosurgeon, “TimeWaster”[11]

    The “TimeWaster” sent me for MRI of the brain and c-spine (#10 and #11) and then I had a follow-up appointment with him about a week later.  It was at this point that he walked in… told me that I was wasting his time, that three other neurosurgeons had already told me NO and that I was not welcome in his office.  That my Chiari was not bad enough for surgery would never be bad enough for surgery and I should be treated as a drug seeker.  While on my way out the door, where I had to pay my $35 co-pay for wasting his time… I asked the desk clerk if they had a neurologist that they referred patients to and I was given a business card.

    I called and made an appointment with “TheHonestOne”[12].  I showed up for my appointment only to be turned away because they waited until the day of my appointment to get my insurance verified and since this was a new policy (and already had a neurosurgeon and an MRI claim submitted) they were now claiming a “pre-existing condition”.  I went home furious; I had to call and get all of my certificates of prior coverage back to 1992 and fax them in.  Once my insurance had figured out that I had never had a gap in insurance in 16 years and that they were stuck paying for my condition… I rescheduled my appointment (July 2008).

    She decided we needed to re-do my EMG and this time she did the entire exam… both electrodes and needles… and the test was completely negative.  She also did a test for carpal tunnel that also came back negative.  It was at this point she determined that she could not help me.  Her specialization was in electrical neurology (nerves, etc.), all my tests were negative and I had just picked up all of my medical records from “HeadacheGuru” and that was the neurologist she sent all of her bad headache patients too.  I was without a doubt suffering from Chiari symptoms and she couldn’t help me.  As disappointed I was to hear this, this was the first honest reaction I had had in nearly three years.  I asked her to refill my prescriptions so that I would have a year to find another doctor and she did.

    I went nearly a year without a doctor for Chiari or headaches or anything… and then one day in March 2009, I called to have my prescriptions refilled and they told me that I was out of refills.  Well SHIT!  So, I got on Google, typed in Neurologist Dallas, and called the very first person who popped up in the results.

    “DietGuru”[13] was the neurologist I ended up with.  Like a good little Chiarian, I took all of my MRIs with me to my appointment on March 26th and basically went in with the attitude of “refill my prescriptions and I will only bug you once a year”.   She did the basic new patient neurological appointment and of course I failed half of her tests, especially the one that can only be described as a field sobriety test.  Then she noticed the huge envelope I had next to me with all of my MRIs.  She asked, “What’s this” and I replied “Oh, I was diagnosed with Chiari nearly 4 years ago”.  To this she replied… “Well didn’t “HeadacheGuru” tell you that Chiari was nothing to worry about?”  And I smarted off, yeah and that’s the problem because that’s crap!

    She took my MRIs and left the room.  I sent out a mass-text message saying… well this is another waste of co-pay and then sat there waiting for a while.  Imagine my surprise when “DietGuru” walked back in with an attitude that was 180-degrees in the opposite direction of what it was when she left.  She was like, goodness gracious… you are so compressed and tight back there.  I can’t believe you haven’t had surgery yet.  We have so many people come in and say they have Chiari but they really don’t (yeah, sure)… but you do.

    She refilled my prescriptions, told me that she was going to send me to a Sleep Doctor for my diagnosed but never treated Obstructive Sleep Apnea and then she was going to send me to a Neurosurgeon who was a friend of hers.  She also added a couple of prescriptions

    Ok, let’s have a prescription recap:

  • Aviane
  • Lexapro
  • Relpax
  • B12
  • Skelaxin (to replace the Flexeril)
  • Phenergan (nausea)
  • Reglan (nausea)
  • Zofran (nausea)
  • Ativan (nausea)
  • Baby Aspirin
  • First, was the appointment with the “SleepDoctor”[14], who up until this point knew more about Chiari than any other doctor I had seen in nearly four years?  He asked me to find my reports from my first two sleep studies before my follow-up appointment and then scheduled me for a sleep study.  The sleep study came back disproving another one of the diagnoses that “TheDrugDealer” had labeled me with right after my diagnosis.  I did not have Obstructive Sleep Apnea but instead I had Centralized Sleep Apnea.  This is a key finding because Centralized Sleep Apnea is linked with Chiari and the Sleep Doctor was hopeful that it would get better if I had Chiari surgery

    Second, was the appointment with the neurosurgeon that was a friend of “DietGuru”.  I went in with this appointment fully expecting to be told I was crazy and I got the exact opposite. “Mercy”[15] decided he wanted to send me for a new set of MRIs of the brain and c-spine (#12 and #13) since my most current set was now a year old.  I had the MRIs done on April 17, 2009 and my follow up appointment with Dr. Denning was on April 23, 2009.

    After the first appointment, I had a peace come over me like the roller coaster I had been on since my diagnosis in August 2005 was finally coming to an end. After 8 neurologists and 4 other neurosurgeons…I found one.  Dr. Denning actually acted like he knew about Chiari… that the symptoms I was exhibiting were “classic Chiari symptoms” and that I would benefit from surgery, although he was willing to let me pick when I would schedule my surgery as long as I did it within a year.

    So, after talking to my parents, my employers and my best friend, we scheduled my surgery for December 15th and a pre-op appointment for the last week of November.

    The next eight months were sheer torture, agony, miserable and I still do not know how I survived.  And I really know had I had to wait any longer, I wouldn’t have.  I also know I wouldn’t have survived without my friends and my amazing boss & co-workers who supported me and did anything they could to help.

    At the end of May 2009, I had a horrible Chiari headache attack that lasted 6 days without letting up.  I actually saw “DietGuru” on day two of that headache and she gave me a prescription for Tramadol.  I left the appointment and drove straight to Waco to go to my youngest cousin’s senior awards night at school before his graduation the next night.  We dropped off the prescription on our way to my parent’s house but we didn’t get to pick it up before we had to go to graduation.  I popped another Relpax and another Skelaxin and attempted to go enjoy the evening. And then not long after the ceremony started, I actually passed out 911 was called.  How embarrassing.  And what a stab in the gut that the EMTs had heard of Chiari but didn’t think there was anything that could be done about it.

    After the drama and trauma, my headache seemed to ease a bit although I didn’t do much of anything all day Saturday.  On Sunday, the headache was back and worse than it had been when I passed out.  My dad went and got that Tramadol prescription and they called “DietGuru”’s office but they never returned the call.  Finally on Monday, after mixing the Relpax, Ativan, Phenergan, Reglan and the Tramadol and passing out for hours… I had finally beaten that attack.

    At the end July 2009, I had another attack.  After 3 days. I finally had enough and drove myself to the ER.  I got there, with a bag with all my prescriptions, and had to explain to them what Chiari was.  So frustrating!  Then they refused to give me any medicine until someone arrived to drive me home.  My phone wouldn’t work while in the ER, but luckily Twitter/Facebook did and I tweeted a plea for someone to come get me.

    The first thing when I was put in a room a nurse arrived to put an IV in my arm.  My first words were “use my left arm; you can’t get one of those in my right arm.  So what does she do? She stabs me in the right arm and JIGGLES the damn needle until I scream expletives.  And then she gives up and goes over to my left arm to put it in.  As of today, January 22, 2011, you can still see the bruise.  Tracey and her (at the time) fiancé Chris and his two kids spent most of the evening with me in the ER and they drove me home and made sure I was set and had everything I needed.

    For some CRAZY reason I can only describe as Glutton for Punishment, I had signed up back in February to organize the Conquer Chiari Walk Across America in Plano in September.  And now here it is August and I hadn’t done hardly anything.  Except for securing our three corporate sponsors for 2009: Sherlock’s Pub and Grill (best friend (Rebecca)’s husband (Roy) works here), Plano Data (my employer) and Gigglesnort Greetings which was a greeting card company owned by an old high school classmate and she made greeting cards to help spread awareness.

    Some how, I don’t know how, but I was granted 10 days where my Chiari wasn’t killing me and I basically organized the entire walk in those 10 days.  And I was able to do all the paperwork and printing at work.  Tracey, who was unemployed at the time, gave up a day to run errands with me the day before the walk.  Chris came over and helped with some of the manual labor. Rebecca and Roy drove up from Houston and my parents drove up from Waco and helped me load the cars and made sure I woke up in time the next morning.  Jennifer and Vicki picked up all the donated drinks the morning of and we actually had a great day.  We couldn’t have personally ordered a more perfect weather day for North Central Texas in September.  We raised $7,930 and had about 88 people in attendance.  And after cleaning it all up they all joined us for lunch at one of my Top5 restaurants in DFW, Kenny’s Burger Joint.

    Yes, I was still dealing with the miserable daily pain and headaches, I was basically attempting to deal with the pain until I couldn’t stand it any more and then I would go home and put myself in a pharmaceutical coma (the cocktail I learned back in May: Relpax, Ativan, Phenergan, Reglan and Tramadol) and start the cycle over.

    In November, my mom drove up from Waco and went to my pre-op appointment with me and Dr. Denning was very patient with us and answered all of our questions.

    I figured out all of my vacation, comp time, etc., and had my office basically set up where they could hopefully survive without me (but still miss me) for the next month or so.  On Monday, December 7, I picked up my temporary handicapped placard and later that evening I went to the Beauty Box hair salon and my stylist shaved my head from ear to ear below the occipital ridge. I basically spent the rest of the week shopping every night buying stuff I would need for surgery, like button down pajamas, ear plugs, chap stick, Oil of Olay wet wipe face cloths, large v-neck sweaters to wear after surgery.

    Our office Christmas Party and my last day of work was Thursday night, December 10, 2009 and we had a wonderful dinner.  Every one of my co-workers was there to hug me and tell me that they were praying for me and that they would see me soon.

    Monday, December 14, 2009, Rebecca, taking an entire week off of work unpaid, flew to Dallas, ran a few errands with me.  Then we met Jennifer and Michael and Samantha (college friends) for my “last supper” at Central 214.  After dinner, Rebecca and I returned to my apartment, got my luggage and stuff I had packed and returned to the hotel near the hospital where my parents and aunt and uncle had checked-in.  This was a very important day and I am so glad that we went out and celebrated the night before instead of my sitting at home worrying about the next morning.

    After 23 YEARS of symptoms, 18 YEARS being misdiagnosed, and 4 YEARS and 4 Months searching for a surgeon, I had surgery on December 15, 2009.

    I checked into the hospital at 5am on December 15th and about 715am I was wheeled into a room for our last meeting with Dr. Denning.  He was all relaxed and assured us that everything was going to be fine.  The anesthesiologist came over and put my IV in and then this other doctor came over and drew lines on my head with an orange wax crayon.  A little while later, I was wheeled to the OR and my parents were told anywhere from 2 – 4 hours.  I’m told they did a brain MRI before (#14) and after (#15) the surgery which really means they weren’t in there very long.

    My surgery was a posterior fossa decompression with a suboccipital craniotomy and a partial laminectomy of C1 and C2.  My neck muscles were not cut and the dura was not opened.  The incision was closed with 15 staples.

    Dr. Richard H Jackson[16], also with Dallas Neurosurgical and Spine was Dr. Denning’s assistant on my posterior fossa decompression (Chiari Decompression) and Dr. Denning assists Dr. Jackson on all of the Chiari surgeries that he does.

    Just under 2 hours, Dr. Denning came skipping out of the OR into the waiting room.  A huge grin across his face and his green eyes sparkling … he proclaimed my surgery over and perfect, and that my family could see me in recovery in a little while.  The fact that my surgery was over so quickly actually scared my dad.  He wasn’t expecting to see Dr. Denning so quick. My mom, best friend and aunt had gone to the cafeteria to get breakfast and were not even there when Dr. Denning came out.  When my dad called to tell them my surgery was over… it scared them too.

    The 1st day in ICU (same day as surgery) I begged and begged for milk and the nurses kept saying I couldn’t have it.  After getting sick three times I screamed loud enough that my dad went and bought me a carton of milk instead of that nasty overly-sweet clear liquid junk (apple juice, cranberry juice, orange sherbet, jello) that just made me vomit.  The nurses were furious that my dad got milk for me, saying I couldn’t have it (I had already drank half of the carton before they saw me). I never got sick again after drinking milk, and as soon as I drank the milk… I was able to hold down not only the milk but solid foods.  It’s almost like the clear liquid phenomenon is a ploy to keep you sicker longer.

    My “sisters” Tannah and Tracye, who were the flower girls in my parents wedding, spent a lot of time with me that day in ICU as did my parents, my aunt, Jennifer, Rebecca and Tracey.   Rebecca even spent all night in the chairs in the waiting room in case I needed her.  My parents went to the hotel and were back bright and early the next morning and sent Rebecca back to the hotel.

    Day 2, I was moved to my own room in the hospital.  Jennifer came by to visit.  My parents spent most of the day with me.  Rebecca came back and stayed the evening and slept in the fold out bed in my room.

    Day 3, the nurses wanted me to get up and take a shower and I was basically helped to the bathroom and left alone, less than 48 hours after brain surgery, in a large freezing bathroom with a hard tile floor and a spray-wand shower head.  I’m thinking they might have learned their lesson after they had to not only replace every towel, roll of toilet paper and everything else in the bathroom because it was all soaked…they also had to mop my entire room because the water leaked out from under the bathroom door and all the way across the room and under my bed.

    After I finished with that disaster, I had a bunch of visitors.  Three of my co-workers came by for a bit, a Yelp friend showed up with a huge box of the best donut holes I have ever had, and Tiff’s Treats delivered cookies (still warm from the oven) & milk.  This was also the day they took me off IV drugs and switched me to an oral prescription, Darvocet.  My parents were there by day, my best friend by night.

    Day 4, was a little more of the same, parents by day, Rebecca at night, lots of naps, lots of Facebook and lots of BORING.  I was so ready to go home.  That night, Michael and Samantha came by and brought a huge box of chocolates.  YUM!

    Over the 4 1/2 days I was a patient at Dallas Presbyterian Hospital; Dr. Denning came by daily and had his PA, Tina Coleman[17] come by at least once a day.  Dr. Denning even came by on his day off on Saturday just in time to release me to go home.

    I was finally released about 1pm on Saturday, December 19th and we went home to my apartment.  My dad headed home, my mom picked up lunch and my prescriptions and Rebecca spent a couple of hours trying to get the multiple layers of leftover sticky glue gunk off the back of my head from the bandages that had been covering my incision and then they helped me put my hair in pig tails and washed my hair in the kitchen sink, each “tail” on each side of the double sink and a towel held over the incision to keep it dry.

    Sunday, December 20th, I rode in the car with my mom to take Rebecca to the airport, and then we stopped at Pinkberry for frozen yogurt on our way home.  A few hours later, Jennifer returned from her weekend trip to Florida and called to see if she could come by to visit… and I had a better idea… let’s go eat!  I think she was shocked that I was up to go eat dinner the day after getting out of the hospital.

    In all honesty… my decompression surgery was LESS painful than the three oral surgeries I have had.  I sent my parents out for burgers, steaks, bubble teas, gelato and frozen yogurt my 2nd-4th nights in the hospital and pretty much ate whatever I wanted/sent them for while in the hospital.  I was off of IV meds by the third day. I was riding in a car and eating out on day 6 and I was off all pain meds on day 7.  Other than the day I sneezed (Christmas Morning)… the only issues I had from surgery were needing laxatives on day 9 because my digestive system hadn’t woken up from the anesthesia… and my scalp itching where the hair was growing back around my incision.

    Monday, December 21st, we drove to Waco for me to spend the rest of my recovery time at my parent’s house.  This was the last day I took pain pills on a regular schedule.

    A friend of the family, Julie, spent the day with me Tuesday and Wednesday while my dad was at work and mom was out running errands getting ready for what little we were doing for the Christmas holiday.

    Christmas morning was the most painful day I had had during the entire surgery ordeal when I sneezed with 15 staples going down the back of my head.  I cried for over an hour, although I have to admit the last 30 minutes I was crying because while the staples hurt like hell, my arms didn’t go numb after I sneezed for the first time in 8 years.  After this I was back on pain meds for another day.

    The holiday time passed quickly and I sneezed again the night of December 27th.  Looking at the weather forecast we also started having to worry about the impending snowy weather in Dallas the on December 29th, the day we had scheduled to have my staples removed… so my mom called and DNSA were more than happy to move my appointment a day early and we drove up to Dallas to have my staples removed on the 28th.  They were thrilled at my recovery as was I.  It was the first time I had gone more than 13 days without a Chiari-headache since 1986.

    After my staple removal we went to celebrate at PF Changs in North Park Mall and Tannah called and just happened to be in the same mall.  She came to the restaurant and ended up sitting there with us for an hour or so hearing all about my experience since that day she saw me in ICU.   Scared the weather was going to turn nasty; we went ahead and went back to Waco that night.

    I stayed home alone during the day after my parents returned to work after the holidays.  On January 4th, I went to a Baylor Lady Bears basketball game with my dad. On day 25, my parents and I drove two cars back to Dallas (I had to drive my aunt’s car because mine had died after not being driven since December 21st).

    On Day 27, Monday, January 11, 2010, much to the surprise of my co-workers and boss… I showed up at work.  They were shocked.  And my boss made sure my co-workers kept track of how long I was at the office each day.  They only let me work half days for the first two weeks.

    In February, 6 weeks after surgery, I went back for my post-op appointment and was told my scar was healing perfectly and that I could go on with my life… just be careful lifting things above my head.  And if exercise (raising heart rate) still triggered headaches that I could avoid that but I needed to do some sort of core strength training for physical therapy to attempt to help with my balance issues that had not been resolved from the surgery.

    I am now one year one month and seven days post op, and I have only had two Chiari-headaches and the majority of the rest of my umpteen symptoms are all on hiatus.  I know that Chiari decompression surgery is not a cure for Chiari, but it is a peace agreement between my Wonky Brain Tail and my body.

    In 2010, I committed again to organizing the Conquer Chiari Walk Across America in Plano.  This year was lot different as I worked for months on the walk instead of doing the best I could and the most I could within about 10 days.  The results were amazing and we had about 192 people attend and raised $13,040.

    One Year Update

    This week Conquer Chiari announced that it was time to find organizers again and I committed to organizing the walk for a 3rd year.  I have kept in touch with my “ZipperSisters” and “ZipperBrothers” since the walk and am excited how much more we can actually do for the walk when I’m not doing it by myself.

    I need to make an appointment to go back to the “SleepDoctor” to see if there is anything that can be done with my sleeping issues which did not get any better after surgery.

    I have found another neurologist “DrDroopy[18]”, who seems very concerned about how the right side of my face is droopy (which it has been all my life), the large blood vessel in my right eye, my right eye being “smaller” than the other one, and my complete lack of balance especially with my eyes clothes.  She has ordered a new round of MRIs (brain and c-spine) and a CT Scan with Contrast to check the blood vessels in my neck and brain.

    In 7 days, the DFW Chiari (and All Sister Conditions) Family will be having our first get together at La Hacienda Ranch in Lewisville.  We attempted to have a get together back in November but no one was able to make it.

    In 75 days, I will be getting on my first airplane since surgery and flying to Ft. Lauderdale and then traveling on to Miami.  Once in Miami, on April 8th, 2011, I will be aboard a Cruise Ship with 80+ other people in my Chiari Family for a fun 4 day 3 night trip to the Bahamas.  It should be interesting to see if those of us who can’t walk a straight line on dry land will even be able to stand upright on water.

    Future Updates:

    References:


    [1] Dr. Mark Schwartze, Baylor University Student Health Center

    [2] Dr. Pam Eckmann. Chiropractic Neurologist, Colleyville, Texas

    [3] Dr. Martin Soloman, Baylor Grapevine

    [4] Dr. Mark Cwikla, Baylor Irving

    [5] Dr. Walter Loyola, Presbyterian Plano

    [6] Dr. Deborah Cantrell, Baylor Irving Coppell Surgical Center and Professional Building

    [7] Dr. David Barnett, Baylor Hospital

    [8] Dr. Waleed H El-Feky, MD, Texas Neurology

    [9] Dr. Steven Herzog, MD, Texas Neurology

    [10] Jonette Albright, PA, Texas Neurology

    [11] Dr. Luis Mignucci, MD, Neurospine Consultants

    [12] Dr. Shari Rosen-Schmidt, MD, Texas Neurology Consultants, LLP

    [13] Dr. Connie Chen, MD, Neurology Consultants of Dallas

    [14] Dr. Andrew Jamieson, Sleep Medicine Associates of Texas, P.A.

    [15] Dr. Jeremy Denning, MD, Dallas Neurosurgical and Spine Associates

    [16] Dr. Richard Jackson, MD, Dallas Neurosurgical and Spine Associates

    [17] Tina Coleman, PA, Dallas Neurosurgical and Spine Associates

    [18] Dr. Devanshi Gupta, MD, Dallas Neurological Associates

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