CHIARI MALFORMATION
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Driving and Chiari
Avatar_f_tn
by tj500, Jun 25, 2010
hi - i was wondering if any had lost their license due to chiari and if you ever got them back.

I have many chiari related problems - scoliosis at 13, epilepsy at 32, chiari/syringomyelia at 38.  I understood the liscense thing because of the epilepsy however, now that this is medication controlled, I would like to get them back.  I am still on disability due to many other problems with chiari and would like to know if any has any advice regarding chiari and driving.  I do have trouble with balance however, i don't have any problem when sitting.  

anyone have any comment?  thanks so much
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Member Comments (13)
620923_tn?1413427272
by selmaSBlank, Jun 25, 2010
Hi and welcome to the Chiari forum.

I know of one that has lost his license permanently...I myself was told I was not allowed to drive, but still have a license .....I know I can not drive...itis diff to ride let alone drive...I do have additional related chiari issues that r holding me back at this point.

There r many chiarians that have had surgery and are driving.Just like the surgery and recovery it is an individual thing.

I would imagine it is more ur epilepsy holding u back more so than ur chiari.

What form of disability r u on?

Have u had ur surgery for chiari?


We r glad to welcome u to our little family here, not happy about the reason u had to seek us out.

"selma"
1179332_tn?1297482590
by *Stormy* , Jun 25, 2010
Hello and Welcome

I haven't lost my licence as far as anyone taking it away but I have placed myself on restrictions...especially since I usually have my 3 children in the car.

I can't drive long distances b/c my driving leg starts to feel weak and I lose attention span and I can't drive at night b/c of my horrible night vision.

I have a feeling these restrictions are going to be somewhat permanent but I am only 6 months post op..so who knows?

Carolyn
Avatar_f_tn
by tj500, Jun 27, 2010
hi and thank you for your comments.  i am on long term disability.  i have been for 6 years.  i understand totally about the long distance driving and night vision.  i wouldn't mind driving with restrictions as well.  i know that i have not wanted to get them back because i could NEVER take the chance in hurting someone else just because i "needed" to drive.  but now i am confident that my seizures are stable.  at least they have been for 8 mths.  my insurance coverage for driving wants a person to be seizure free for 3 consecutive months so I am within that range.

I still have many other and varied problems but I am hoping i will at least have some sense of independence back again if i can get my license back.  the other question they have on the questionairre for medical purposes are problems with dizziness.  I do have balance issues when I walk or stand however, i never have a problem with balance when i am sitting.

i dunno....i am just cautiously hopeful.  wish me luck....I visit my doc on wednesday!    tracy
Avatar_f_tn
by tj500, Jun 27, 2010
oh yes and further to your question selma...I have had my surgery.  after the surgery i would have said that i was much better however, I did not know that alot of the problems i had BEFORE surgery were chiari related and these seem to be actual worse.

choking on food(not in the traditional sense-more like my throat does not move the muscle to get the food down-it just sits there no matter how much i swallow)
headaches and vomiting(much worse than before)
absolutely awful internal temperature gauge! (always always cold-today 27 degrees in the sun with sweats and sweatshirt and slippers and still shivering)
lots of word finding problems
uncontrollable perspiration except i am not at all hot but the water runs off of me especially when i am tense.
run out of breath from the smallest of things(even talking - maybe i should just shutup!)
my back is quite painful most days but I have scoliosis as well and will be 47 in a few weeks so not surprising really.
very numb and feels like swelled legs from sitting.  can't stand long at all.  my right arm always goes numb for no reason.

I have been in a back brace for scoliosis for 3 years at age 13 but took it off early because i was operated on for hydrocephalus at 16 and just couldn't get used to wearing it again when i came out of the hospital 3 weeks later.  the doc at that time told me i would be crippled by forty.  

I have kept physically fit and healthy specifically for these problems and still get in 30 mins on an eliptical 4-5 times a week(albeit very slowly) and i do stretching and weights etc.

I developed epilepsy around age 34 and was diagnosed with chiari and syringomyelia when i was 41.

sorry i guess i got carried away with my history.  i guess what i am trying to say is that I am doing everything i can possibly do to help myself but it seems like i'm pulling teeth to get further help from the doctors.  they seem to want to write me off as some kind of lost cause.

anyway, thanks for letting me vent.  tracy
620923_tn?1413427272
by selmaSBlank, Jun 27, 2010
Hi Tracy,
Thanks for sharing ur history...it helps us understand what u r going thru.....

I was wondering if u had been checked for hashimoto's....and if u had ur esophagus looked at.....it sounds like u may have a motility issue there...which could explain the food not moving down properly.....do u have or have u had acid reflux?


Well u certainly have been thru the mill and I pray u get some answers to help find relief for what u r currently dealing with.

"selma"
Avatar_f_tn
by tj500, Jun 28, 2010
Another question and please do not feel oblligated to answer....are you on disability?  the reason i ask is that my question regarding anyone losing their license was aimed at specifically the chiari issue however, I didn't (and should have asked) if anyone were currently on disability and had lost their license.  it does make a difference at least to me as I was worried if getting my license back would interfere with my disability insurance.  basically... do most disability insurers recognize the vast scope of symptoms created by chiari or do they really not acknowledge. if the latter is true then i would assume the only reason i am able to be off of work would be the epilepsy and not chiari.  no one has ever really clarified that for me and i am a bit concerned that my insurance would be taken away if i get my license back.  

I realize of course that no one would can read my OWN insurance companies mind as every case is different but I was looking for a general consensus regarding anyonne else ever dealing with this type of scenario.  in a nutshell, is anyone who, still is able to drive, on disability for chiari?  how is your insurance company recognizing your chiari if at all.

this would be a question for anyone too to please chime in....thanks, tracy

620923_tn?1413427272
by selmaSBlank, Jun 28, 2010
Hi...well, I was denied my LTD 2x's...another member finally won, but the license was revoked prior to getting the disability...not sure which is relevant.

There r many people on disability that can and do drive....hence the disabled license plates.....getting disability insurance claims goes to being able to prove that u can not work bcuz of ur condition.

My LTD denied me...and bcuz of a new law it is now considered a federal case...there r not too many lawyers that have the knowledge of working these cases, so very diff to fight, plus it is a federal case and will cost more to fight...that is our gov working against us.

Make sure u have a lawyer for the initial review and plenty of records supporting the claim from ur drs.

Good luck
"selma"
1179332_tn?1297482590
by *Stormy* , Jun 28, 2010
Wow..you have had quite a time with all your health issues..

I know what you mean about figuring out all these things after the fact that you realize had to do with Chiari.

I would say I am much better too after surgery however, different problems have shown up now and I am really having a hard time finding anyone to really look into it for me. I am the same way..all I am doing is trying to get my life back as close to what it was b4..but w/o everyone thinking I am a hypochodriac. Sometimes it is so draining..

I am not on disability and haven't applied for it. I was a stay at home mom b4 so I haven't had to leave a job but if I wanted to work now, I feel like there would be no way that I could. Also, I was in school working towards a career...and now I haven't made it back to doing that either. So I feel the frustration..the "grand plan" was for me to have started working this April...instead I had to drop out of school and we are living on a single, self employed income with 3 kids. I have a feeling if I even tried disability..I wouldn't get very far.

I'm really sorry to hear that you are experiencing worsening symptoms after surgery..

Carolyn
Avatar_m_tn
by fatenabu1, Jun 29, 2010
I have been told by my doctors that I can no longer drive, due to my extreme leg weakness. Also even without the leg weakness, my coordination comes and goes and I have full body muscle spasms related to the Chiari. So currently I am not driving and was told to never drive pretty much.  Sorry I am not being encouraging. I hope you get to drive, I miss it quite a bit. Driving was always a relaxing thing for me.

Dustin