Just diagnosed today..

[dvanbeck]

(Disclaimer: this is super long -- I'm sorry. Questions are at the bottom if you don't want to read my whole story first.)


Hi there,
I actually just got diagnosed with Chiari Malformation type I today by my neurologist. I've been on this crazy journey of trying to figure out what is wrong with me for about a year and a half now. In a way it is kind of nice to finally have an answer, but I guess I'm still concerned.
I first went to and ENT doctor February, 2011 who thought I had benign paroxysmal positional vertigo, but they couldn't get the Dix-Halpike maneuver to work on me. I ended up giving up on being treated for it and amazingly my symptoms subsided (for a while). My dizziness and headaches would come and go every few weeks, but they seemed pretty manageable at the time.
A few months ago it came back more intense than ever, and I decided it was finally time to do whatever was necessary to figure this out. I started getting this dizziness so bad that I couldn't bend over to put shoes on, I couldn't wash my hair properly in the shower, had to call in sick to work a lot, and I could barely sleep at night because of the "bedspins" even when I hadn't had a sip of alcohol. I also started noticing vision changes -- mostly blurriness in my peripheral vision which was always accompanied by excruciating headaches in my occipital region. I started to get worried there was something more than just BPPV going on with me and it wasn't until my ENT sent me for a VNG (videonystagmography) that I was finally referred to a neurologist.
So two weeks ago I went to my neurologist and he diagnosed me with vestibular migraines and told me that I should get an MRI just as a precaution and to rule out having a mass or something. I went the very next day to get my MRI -- it all went well, and I knew I couldn't have a tumor because they would have rushed me right back upstairs if I did.
Anyways, I had my follow-up visit today, and the doctors concluded that I have a Chiari Malformation type I of 8mm. They said that they want to run the images past the neurosurgeons too (one of which I work with at school doing glioblastoma research) and see what their thoughts are about surgery. I do NOT want to have surgery until I exhaust all possible non-invasive treatment ideas. My neurologist suggested that I try to minimize stress and loosen up a little. He felt my neck/shoulder muscles and they are SUPER tight... So he wants me to go to PT (with massages too, WOO!) for a few weeks as well as start taking Celexa to manage my stress levels. After a few weeks of PT and Celexa I am going back to get another MRI to look at the CSF flow then will be having a follow-up appointment with my neurologist 4 weeks from today.

Here are some of my questions after doing a little researching on my own:
How bad (in mm's I guess) is bad enough to require surgery?
What are other non-invasive treatments that you may have tried?
What are your thoughts on chiropractors?
How worried should I be about what will happen to me when I get dropped from my parents insurance when I turn 26 in May now that I have a pre-existing condition? (yeah that doesn't help with the stress levels, dang it)
How do I find a Chiari specialist? I live in the Upper Peninsula of Michigan... middle of NO WHERE


Thank you guys for reading this, I hope to get some responses!

[Rylanesmom]

Geez iPad EDS is a connective tissue disorder many of us have...manhood I don't have lol

[Rylanesmom]

Get checked or Ehler Danlos Syndrome too.  Your back issues could be related or chiari or EDS is a none give tissue problem manhood us (including I have). It is overwhelming at first but also a relief to finally have answers:) I too saw a chiro and feel it made it worse.  I would actually tell him my neck popped when it didn't so he wouldn't kill me lol...no more

[dvanbeck]

I'm so worried that I've been making this worse with the chiropractor that I've been seeing for about a year now.... I just got done talking with my parents about my diagnosis. We all think its best that I just stop going to the chiro altogether. I guess if I have lower back issues pop up again I can squeeze in for an appointment or something.

I think I'm going to wait til my 4 week follow-up visit with my neurologist before I get a second opinion. My mom works at a hospital in Wisconsin, so I guess I'll head there first before I'd start flying places. I'm a college student applying to medical schools right now and I can't really afford to be flying places. :( I know I need to get my priorities straight with making sure I'm healthy, but its all just so new and kinda scary right now.

I think I just need to calm down...

[selmaS]

  Hi and welcome to the Chiari forum.

As Mel mentioned above, it is not the length of herniation, but the width and they do not give u that measurement...really if u have a CSF obstruction is what is more concerning then how long it is as it can be 13mm long, but be thin and allow the CSF to flow, or u could have a 2mm herniation that is like a cork and does not allow flow....

Also as Mel mentioned NO Chiro's as they can compress the herniation into ur brainstem causing further issues....do not allow manual manipulation of ur neck and shoulders.

  We do have a list of Drs that the members have compiled, not all on the  list may be true specialists but it is a means to help u get started with ur research......

Please note- u may have to travel may of us do and our list is not a referral...what works for one may not work for another so u have to visit a few Drs of comparable experience and educate urself so u will know when u find the right dr for u.

  Use the Health Pages for more info and to locate the Drs List-http://www.medhelp.org/health_pages/list?cid=186

Please keep asking questions, and know u r not alone : )

[Rylanesmom]

You will get responses:) we have a great group of individuals on here that can empathize...this is the place others understand what is like to have chiari

[Rylanesmom]

mm is not what determines if you need surgery you need a cine flow study to determine if the is a flow blockage.  A true chiari specialist would test ou for related conditions (many of us have more) and factor in symptoms, quality of life, and blockage before making recommendation of surgery.  8 mm is considered a large enough herniation that chiari specialists would see you.  (some don't see under 5mm) Nothing worked to losen neck/shoulder on me preop including pt and drugs. NO CHIOROPRACTORS!  Use heat packs it may help how you feel.  Congrats on the diagnosis as it sounds like you have been on the chiari run around we all go through.  Do not allow traction or neck manipulation as they can really hurt you.  Most of us fly o a specialist and there is a list on here.  Mine is Dr Oro in Colorado and many go o The Chiari Institute in NY.  Sorry you had to find us but glad you did:)