35 years ago today I was born

[nsalem656]

Last year I was just coming home from the hospital on my birthday now I'm here, but I got the worst birthday present from my doctor at the NIH. It seems my falls are from an abnormality of the way that sensation information from my limbs get transmitted to the balance portion of the brain and the strength in my legs (paraphrasing my letter from the doctor) and a mild deficit of function in part of the brain balance center (vestibular nuclei). The only physical therapy I had only helped my strength in the legs not my balance. I haven't had an occupational therapist access the house, but basically the medication they give didn't work when I took it before. They told me in person that it's not something they can fix. I can't use a cane, walker or anything that has the hands doing the jobs the legs are supposed to do because both wrists are currently having problems. I don't know if I just think about an electric wheelchair like my hand surgeon  suggested or not. Any ideas?

[selmaS]

Hi....it all depends on the root cause of ur leg twitches...it could also be restless leg syndrome which is associated with sleep apnea, most sleep clinics will ask about this issue when u go.

Look into sleep apnea to rule it out as all with Chiari should.

If ur twitches are Chiari related then they may dissipate post op....I had bad twitches but found mine are from EDS as well as some may have been Chiari related.....so hard to know when many of us have more then Chiari to deal with,

[nsalem656]

I don't know the answer. I think Selma does.

[hevnw8s]

Once you have the surgey, does it help the leg twitches? I would think relieving the pressure would help.

[nsalem656]

Usually my leg twitches happen while I'm asleep but I do seem to get legs falling asleep for no apparent reason.

[hevnw8s]

Thank you for taking the time to respond. Since my diagnosis and the continuous changes with my body, I have lots of questions. I'm learning from everyone else and what they are experiencing. I actually bought a wheelchair about 5 months ago. I only use it when I know I am going somewhere that requires a lot walking.

I have been getting ALOT of leg twitches and I'm getting worried. Do you get those ase well?

[nsalem656]

To: hevnw8s

Yeah. The doctors who did the balance testing said it was caused by the Chiari. The real problem is up to the car accident in 2010 I was falling at most once a year than it turned to once a month since the surgery it's once every three months. If that wasn't bad enough, the doctors knew about it in 2006 2009 and the ssi hearing had a neurosurgeon in 2008. I wonder if my balance would have been fixable if I had surgery prior to the car accident.

To Selma:

Yeah Kienbocks is a real pain. I really don't want to be in a wheelchair is my problem. Especially since it doesn't solve my two story house problem and especially the fact that the bathroom is one of the most frequent falls I've had since the car accident.

[selmaS]

  Hi Happy Birthday !!

So sorry u r still having these issues, I guess the other condition u have is really tripping up ur recovery from the surgery.,

If a wheelchair is going to be helpful it may be the way to go.....I use a cane have for 11 plus yrs, long b4 I knew I had EDS now my wrist is out of whack...looks deformed all from using the cane and my joints shifting...

  I hope u can enjoy ur day <3 ((hugs))

[hevnw8s]

Hi. If you don't mind me asking, what is your official diagnosis? Have they attributed any of your symptoms to Chiari?


hevn