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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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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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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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