QUESTION OF THE MONTH ~~~

[selmaS]

  Hi ALL...wondering....

What do u feel is the biggest CHANGE to u since ur DX?

[jwood447]

What were the other two reasons?

[selmaS]

  I am not a medical professional in ne capacity...

And I never got disability approved in fact ky LTD was denied and to fight that is now a federal case bcuz of a new law ERISA...and there r not too many lawyers versed on this and it would cost more to fight then I would win, so not ne that would take it  either,....

I was well pleased with my NS at TCI....It can take 6 to 8 weeks to hear back, and then a few more weeks, as they review all cases at a weekly meeting and take the worse cases first.

I have had a cane since the yr 2000 and had no idea what the issue with balance was...as we felt it was from a botched ankle surgery....I still use my cane for uneven surfaces...grass, gravel roads...etc...but I am doing better now then b4 surgery.

B4 u had surgery for Chiari, were u tested for ALL related conditions?

[SmilingLisa]

Hi,
Surgeons only operate for 3 reasons, diminished flow is one, I had little if any  flow on my CINE.  Size of herniation doesn't matter. I had a very large one 20mm and was diagnosed after an mva w/ multiple symptoms.  Can u work light duty?  Get another opinion w/ a NS that does a lot of chiari operations.  Selma is wonderful and can refer u to the list.

[SmilingLisa]

Hi Selma,
I had headaches 24/7, pain and tingling in my legs 24/7, shoulder and neck pain, trouble swallowing, heavy arms, throat pain, severe vertigo and dizziness, was driving left of center and stopping beyond red lights and stop signs-depth perception was off ,had concussion from mva,  major nausea, nystagmus, falling stars, incontinence, dropping things, ataxia, forgetfulness, numbness of hands and feet, cp, severe weakness and lethargy, very poor concentration, blurred and double vision etc pre op.
Are you a nurse?  How did you get your disability approved? and how long did it take?  Where u pleased w/TCI?  How long does it take to get an appt?
Did u have any trouble walking pre op?  or now? still having n/t in legs walking. I am post op over a yr.

[Lifesvr7]

I'm more frustrated with doctors after chiari Dx, they still don't want to listen. I have since done research and basically diagnosed myself (later confirmed when I forced them to do testing) with Hashi's and LPR. How many times must I be right before they listen. Still can't get anyone to listen or attempt to diagnose connective tissue disorder, whether it be EDS or something else. The pain tells me something is wrong. I also need a new MRI of my thoracic and lumbar due increasing excruciating pain, but no one seems to think anything is wrong there either. Went to see a so called chiari specialist last week and it was a joke. He said the only symptom I have that is due to chiari is my headaches yet still recommends surgery due to blocked CSF. HE has no idea where other symptoms are coming from and didn't care. He also said I was unlikely to develope syrinx even though CSF was "significantly" blocked. Glad he has a crystal ball. Needless to say, I'm back to doctor shopping. Getting so irritated at having to be the patient AND the doctor. Not sure how much more I can handle.

[jwood447]

I getting mixed up on how to post, I hope you get them.
My main symptoms are: numb face, slurring words and wrong words with the feeling of drooling .  Parastesia in arms and legs, pressure in back of neck ,hot pressure in the head apon bending head front or back. Poor consintration, titnitis, cant smell bleach, various shooting of pain in different extrimities poor cognition. Bad vertical doulble vision corrected with prisims and doulbe when tired.Heavy arms, Pain inthe Jaw, pounding in back of neck, numbness when sleeping on my rt side of arm and leg dizzyness when turning over. All symptoms come and go : the worst is numb face after riding in a car thats bumpy.  Hear aches are geting worst but tolerable when I lay dowm. Some nausea.  
Other history:
Hypo thyroid, Gout, Celiac disease,New Borderline diabetes(trying to fix with diet ) before it is too late.  
I was very active biking kayacking, white water rafting, roller coasters last year with a few falls.  I broke MY Self.