Need some advice

[ff105wife]

Some of you may read this same post under someone else's question-sorry posted in wrong spot first time. New at this whole posting business but since drs aren't helping thought I'd come to the only others who can even come close to understanding my frustration!

I've been fighting this battle of crazy symptoms for almost s year now. Both nuerologists I've seen say symptoms aren't related to chiari. However I've read many of you experiencing some of the same, so obviously not coincidence! I've been told tingling in fingers & toes, dizziness, tongue going numb, etc not related howver can't tell me why I'm having then. Anyone else have this combination? Also major wrist and hand pain and weakness. Don't really have the headaches-praise the Lord! When I do get one it Is up back of neck and shoulders but nothing too terrible like I've read about. Think I'm being dismissed because not having "traditional" headaches. Symptoms seem to have subsided  for a good month. Chiari and fluid in spinal canal causing it to be dialated, however one dr says have syrinx, one says  no-only more confused when leave dr!!! My main question is if symptoms not really bad at this time do I continue to  find chiari specialist or wait til symptoms show back up? Don't feel need to go because symptom free for most part  but don't want to let go and cause damage that couldve been prevented. Opinions?

[selmaS]

U r more than welcome : )

[ff105wife]

Thanks so much for taking the time to help me out again. I can't tell you how validating it is to have found this site!

[selmaS]

HI...it all depends on ur insurance if u need a referral first....or if u can select ur own specialists...PPO verses a HMO....PPO u can choose a HMO u can not.

Then when u do pick a few from the list, u will have to ask what ur insurance will cover and what is ur responsibility.....

U will want to find either a ML or a PCP at home to rely on to go to when u need ASAP attention.....and if u do require surgery a NS will only see u until the scar itself is healed.....

So do look into getting a PCP that is willing to learn as u go, if they do not know about chiari already....

But u deff want to go to a few at least 3 to see which is the best for u...financially and medically....both have to work for u...as well as u feeling comfortable with the dr and his ability to care for u.

Just bcuz someone else went to them and liked them does not mean u will, so the list is not a referral, just a starting point.

We r happy to have u jpin us, but not happy for the reasons u r here.

"selma"

[ff105wife]

Thanks for your response. I'm in Oklahoma and think I'm obviously going to have to go out of state-seems nobody here really knows about it even though state that they do. Numerous symptoms I have seen some of you all discuss both NL and an NS say chiari wouldn't cause. This gets so frustrating because some of the symptoms are listed on ASAP itself. What are my first steps to finding a specialist? Do I just pick off list and call myself? Never really went thru GP because this all started through a sports medicine dr because of neck and shoulder pain, so don't have anyone except him to really refer me. Sorry new at doing this all myself, really just took drs word for it until realized there's really something wrong and I'm not just crazy!

[selmaS]

Hi and welcome to the Chiari forum.

Yup, get to a true chiari dr, get an evaluation to see what is going on...not all ur symptoms may be from chiari directly, but may be from a related condition....like Ehlers- Danlos, RA....there r several things it may be ...

But u deff want to know if u have a syrinx and a CSF blockage.....not everyone will have all the same symptoms....so to say u do not fit the traditional symptoms is not the way to review ur condition.....but, quality of life is something to be considered in the overall picture.

No worries with the posting issues, it takes a while to adjust to navigating...just ask for help if u need it  : )

Glad to welcome u, but not happy for the reason that bring u.

"selma"

[thieb9]

I replied under the other post

[ff105wife]

Thanks! You both confirmed what I pretty much knew I should do but putting of because the drs have made me feel like such a freak! Guess I need to start searching for one that will listen and knows what he's talking about.

[rod44]

I agree with Elizabeth, it is better ti get your dx confirmed and if your symptoms are not causing problems the Chiari NS can manage your condition conservatively for now. If for some reason you do suffer a deterioration of your condition your NS will know your history and should respond with out delay in treating you.


Ray    

[n40066]

you need to be seen by a chiari specialist to have your condition properly evaluated.  with chiari, your symptoms will come and go in cycles.  there is really no true pattern or way to predict when they will rear their ugly head!  many factors can help to trigger our symptoms to flare, however.  weather, stress, certain physical activities....but the only true way to know what is best for YOU is to be seen by a specialist in this field!!!  good luck, friend....and do let us know how you make out!
elizabeth