NY area doctors? Just diagnosed

Hello all:
I am a 29 y/o female, just diagnosed. Both tonsils are descended, 7mm on the right and the MRI report doesn't give descent # for the left.  Trying not to panic, as incidentally I had a family friend who passed from syringomyelia back in 1996... watched her suffer horribly.
After reading many posts on here, which I am very grateful to have found, I realize I am very lucky to get this dx after only about a year of being told I'm crazy by nearly every doctor I saw - it's stress, it's fibromyalgia, relax, etc. I am also lucky in that my main symptoms are neck/shoulder pain, but it is constant - daily for at least 7 months. I also have weakness in my hands - they're not completely numb but they don't work right - I can't describe more clearly. The neck pain is the worst though, and I'm a student - does not lend itself to taking painkillers. I also work full time. I'm having a really hard time keeping up with both and am starting to get legitimately depressed after this long of being in near constant pain. Doctors said it was muscle spasms, but no one could tell me what would cause my muscles to spasm 24/7 for months on end.
It would be really helpful to me to find out:
How many people were involved in a car accident or other trauma before becoming symptomatic? I was in a bad one 2 years ago.. I realize this is congenital (or so it seems) but that seems to be something many of you guys mention.
Does anyone have experience with any particular doctor in the NY area who is better than rest? I'd travel too, but I think I should see a neurosurgeon who can at least help me figure out a plan to monitor this or whatever. I see you guys have mentioned a doctor thread but I can't find it, and I saw there is a chiari institute out in LI - LIJ/Northshore.. but they don't take insurance? Does everyone go broke trying to manage this disease?
I've always been very clumsy - self described accident prone - even my nintendo wii asks me if I trip when I walk when I do the balance exercises... might be related. My mom also died about 3 years ago, and I thought that was why I was having trouble w/memory/concentration/attention, esp with school, but nothing's seemed to work - antidepressants, etc - I'm wondering how many ppl think they truly have these types of problems bc of the chiari?
Any help would really be appreciated. I am wishing I had my mom around for something like this and the rest of my family kind of *****, and aren't going to be much help. If anyone can help, it would go a really long way. Thank you so much.

[pamk5]

Welcome to our little family.  I was just diagnosed in August with an 8mm herniation after someone hit me from the rear while stopped in traffic.  It was a pretty bad accident and alot of the people here became symptomatic due to some sort of trauma.  The first thing is of course find a chiari specialist save yourself alot of time and frustration seeing docs "who just dont get it" There is a list here in the forum of doctors other members have used and liked.

They will want to do a cine MRI as well as a MRI of your spine to make sure there is no syrinx.  I definitely have always been clumsy as well and had difficulty with attention span and swallowing, so yes I think these are related and there are long, varied lists of symptoms this can cause.  

I understand too about your mom.  I lost mine many years ago and have wished so many times she was here just to hold my hand thru this.  At least you have found a place with lots of information and support.  Remember you are not alone!!

[*Stormy*]

Hello and Welcome,

I wish I could be of more help but I actually live in Canada. However, I wanted to point out that we do have a specialists list and there are some from NY:
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

BTW- I know exactly what you mean about your hands not working right!!! I tried telling my Drs that for so long but couldn't figure out how to describe it...sort of like a weakness/numbness but then also just like they weren't receiving the signal from my brain in time. My symptoms started out like that too, severe neck, shoulder pain that would travel down my arm.
I was a student at the time as well and I found that it was killer when I had to bend my head down to read a textbook. At the time I had no idea what I had so I couldn't understand why it was aggravating me so.
You are lucky for the fact that you know what you have and can deal with it. I was misdx'd for about 2 years in total but I struggled through six months of severe symptoms that rapidly got worse with no explanation of what was going one. So take the positivity that you do have a dx and now you will need to start seeking the best help for yourself.
As for the car accident, I wasn't in one but my symptoms came on heavily when I upped my running to 3-4 times a week to train for a marathon (the pounding on pavement). I have also heard that in some situations that Chiari can be acquired too but most likely it is a case that you were born with it but this car accident triggered the symptoms.

Insurance is different here in Canada but I know a lot of members here have found some good Drs who have accepted their insurance so hopefully they can help you out.

I was a clumsy child all through my life....I have always had trouble with keeping my balance. I was a very flexible gymnast but always had trouble staying on the beam.

I think yes, 100% that most of us have blamed our Chiari symptoms on something else especially at the start. When mine really reared up I was dealing with going to night school while taking care of 3 kids, dealing with some very upsetting family deaths and meanwhile we were starting up a new business. My Dr blamed it all on stress and anxiety and I believed her....for awhile...but you get to the point where you realize, I am feeling better (stress wise) but my body is just getting worse and no matter what I do, I can't get relief.  I have found that stress is also a trigger for the onslaught of symptoms too. Remember, we all know our bodies better than anyone else !!

I hope I have been some help...this forum is a really great place for support so remember we will be here for you whenever you need it!

Carolyn

[n40066]

welcome to our chiari family!  sorry you are a member, but glad you found us!  here is the link for the list of specialist our members have used and liked http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

most of us end up having to travel to find someone we are comfortable with and that takes our insurance, so be prepared!  chiari is not a cheap fix!  lol!  and surgery is the only way to stop the progression of the symptoms that we know of at this point in time.  it is not a cure.  they haven't figured that one out yet!   pam is correct, in that you should really get checked for other related problems like a blockage of csf, syrinx, sleep apnea, tethered cord, eds....there are so many other problems that can be caused by chiari.  the whole thing can be a bit overwhelming in the begining, but your doing the right thing by researching!  this place was a Godsend for me when i was first dx!  here, i found not just answers, but friendship, compassion and understanding that i just couldn't get from anywhere else.  i hope you will have the same experience!  we all felt alone and nuts at one point in time.....but not once we found each other!  lol!  now we're all a bit loopy together!  lol!
i never had a problem at all until i was in a plane crash in 2001 and broke my back.  it wasn't until 2009 that i finally got an accurate dx. and i had my surgery in nov of 2009.  what a difference it has made in my life!!!!  
feel free to ask anything you want, to vent, cry, share a giggle or two or whatever...glad to have you aboard!
elizabeth

[selmaS]

Hi and welcome to the chiari forum.

I see we got the link to the drs list to u already....so I will not add it....but if u have questions regarding TCI ....they were my drs and I would be willing to give u more info.

And it is only the NS that does not take insurance......the NL and all at the hospital do....and u can arrange payment plans and have fund raising....but u want the best drs and they should be chiari specialists.

As for ur question, yes I was in a MVA, but had my symptoms b4...they did flare up afterward....falls, MVA's etc will and can trigger a dormant condition like chiari to flare.
IMHO we all have had symptoms b4 the flare but chalked the symptoms up to other things, the flu, stress,  and since we were not aware of this...we had no idea the many issues we may have dealt with were related.

If u  use the Health Pages here on MedHelp u will find one titled LINKS...it has links to diff orgs that will pay to fly u to a dr...and some orgs that may help defray costs of surgery...do check them out.

http://www.medhelp.org/health_pages/list?cid=186

I do agree with the symptoms u mention and them being chiari related..the clumsiness...forgetfulness etc....

Know u r not alone, we r here for u and I am sure u can bring ur family around : )

"selma"

[killypumpkin]

I was fine until I got hit by a car, not a single symptom not even a headache.  Landed on my back in the street hitting my head and haven't been the same since.

My NL said she believes symptoms are trauma induced in some though others do not believe this.

I say once again open your eyes and look at statistics it's obvious.

[burdzmom]

Hello there sweetness......you have found a bunch of really honest people that all share in the ups and downs of this stuff. :( sorry your here-but. . . . . not really. your here because you were suppose to be. think of it this way. all the people on here have different circumstances and issues you will be able to relate to. i think i can relate to you on alot of levels. (Read my posts and you'll better understand me - in all brutal honesty......i cant retype "my story"......i just dont feel like it but its here to read)
i am a 33 year old mom of two lil nuggets. i did not have a trauma that found my chiari. i fell to the floor in front of my two little ones , thankfully at my mothers house, and was rushed to a trauma hospital in NJ where they initially missed it on the MRI. . . fantastic. . . i was rushed back to the same hospital not even 8 hours later after they called to tell us they found  a "serious brain condition that needed immediate attention". . . . awesome. . . . im at a loss for words for this one.....i was an all american soccer player. . . . a police officer. . . a marathon runner. . . always was breaking, bruising things. stitches, concussions....you name it-i did it. THROUGH ALL OF MY SCANS FROM MY VERY FIRST CONCUSSION ( i think i was 14 ) - NO MRI OR CAT FOUND MY CHIARI!!!!  Consider yourself lucky to be here because many people are misdiagnosed and suffer.
im sorry your mom isnt around to help you.  but if this can offer you any support, it will. all of these wonderful ladies have a great balance, sense of humor and an ability to bring you back down from your crazed panic state of mind all through reading what they have to say.
again, take some advice, leave some too.....its all here to guide and help you get better.
First things first, go to a CHIARI NEURO who can give you input. I have learned from this forum that these specialist have the best experience and statistically have patients recover quicker with less or minimal side effects. Start calling doctors on the forum and ask about insurance. Many do take it. There is one doctor at the LI Chiari Hospital that took my insurance however, we are headed to Johns Hopkins instead.
WE are all here for you. Many are on Facebook too..... ill private message you my name and cell. Feel free to text me anytime. I am fortunate to have a few ladies on here that have done this for me and its been a great feeling knowing they are always there for me and know exactly what i feel and how im doing. "they just get it"..... We all do.
Hang in there girl. :)

[PainInNeck22]

I thought I responded to this but think I am just messing up on the website!!!

I'm sorry in that case but have to just say you guys are awesome. Your responses helped me so very much, you have no idea. And yes, the support helps. My friends are just busting out crying on me & then ignoring me?? I thought at first it was my way of explaining it but nope, I've run it by others and if anything I'm being conservative... I'm like thanks guys, I think it's supposed to be me if anyone crying no?

I am going to go to the chiari institute (have to get thru their paperwork first) and called Johns Hopkins. There's a guy here in NYC I think who does great with this but he's a pediatric neurosurgeon & won't see adults... he DOES do the operation by endoscope though which God willing, if and when I need the surgery they can do. Although I find the zipperhead thing quite endearing!

One more q would be - my doctors (before chiari was discovered) were telling me NOT to wear my soft collar/neck brace... but it actually helps alleviate the pain alot for me. Is there something I don't know about the collars? Doc's thinking is to strengthen my neck muscles & the collar won't help me do that, but now that I know about this - I'm wondering if it changes anything. The kicker is - NO ONE KNOWS!!

Same thing w/physical therapy. Mine is great, and we agreed NO MORE touching the neck but I'm thinking it is still ok to get thoracic masssage, lower on my back and a little manipulation/loosening of the joints in my back? She also does trigger points in my shoulders which I swear are better than any painkillers... I get a rush of endorphins it brings tears to my eyes to finally truly have the pain relieved, if only momentarily. Anyone have an opinion or know anything about this, good or bad? I dont' know if I should still be doing weights or at what weight... no doctor can seemingly tell me either. PT uses the TENS on me and the heat, it's short lasting but bettter than nothing. I do heat every single day, nothing makes this better... it's got to be the Chiari.

[selmaS]

Hi...if u also have cranial instability the soft brace may be helpful.....once u get to one of the chiari drs u will have a better understanding of what is going on.

I suggest going to a few drs and seeing which u feel more comfortable with...I went to TCI in NY and was very happy...several members went to WI and were happy there....go with ur gut after doing ur research and  meeting the drs.

Do be sure to get checked for all related conditions .....the instability I mentioned at the start of my reply can be the result of u possibly having Ehlers-Danlos or Joint Hypermobility Syndrome...so do get checked and be careful with the PT in the meantime.

"selma"

[PainInNeck22]

Thank u so much Selma. Its noted on my MRI that there's a 'tight craniocervical junction' but I've no idea how it relates to whether I should wear a collar. You're entirely right about seeing a specialist. Might have to wait a few months though, and its still all just sinking in.
Thank you too for sharing your experience with TCI.. it'd be convenient if that works for me, its very close.
Thank you all. :'(

[n40066]

since you haven't had the surgery, i would think the collar would feel good to you!  i used to help me when from time to time!  i have cranial instability, but my titanium plate has also come loose, so my collar does more harm then good for the most part now.  to be perfectly honest with you, i say if it makes you feel better, use it!!!!  wearing the collar will not hurt you at all!  as for pt, like selma said, massage is great....just stay away from the neck.  that is even more important once you have had the surgery!!