just diagnosed...by accident

[dac70]

Hello. I'm new to all of this... I hv been hving neck pain for about 3 yrs and was told that I had 2 herniated disks. At first I was in severe pain for about 2 months. Then it only seemed to flare up every 3 months or so. For about a month and a half I hv been in constant pain. I really think my Dr did an MRI to cover herself because she wad hving to fill my pain meds more often...which I understand. But they found this Chiari malformation. She referred me to a neurosurgeon but I can't see him until Feb Fen 23

[linnielou232]

Welcome.  You have come to the right place for support and for info.  I was in your shoes.  I went 3 yrs and went to 3 different Dr. before I was dx'd.  It was in my medical records for a yr and didn't know it.  I didn't even know what Chairi was until it was told to me.  The most flustrating part is finding the right Dr.  Keep doing your research and find a true Chairian spec.  It will help you in the end.  Making the decision of surgery is a hard one but you have to wager how this is affecting your life.  For me I didn't have a choice but to have surgery.  It helped, but it is a long recovery for some of us.  Just wanted to let you know your not alone and there are a lot of people here that understand what you are going through.  Best of luck on the journey for answer's.  Just keep being persistant and you'll find your answer's.

[selmaS]

So this is not life threatening or affecting u in a medical way other then u do not feel well....IE- u r not having drop attacks , breathing issues that would indicate an emergency situation....

So, do things in moderation to help slow ur symptoms, the more u do the more u will develop pain and symptoms.

  Again, educate urself and research Drs.....

      "selma"

[dac70]

Symptoms:
Ringing in the ears
Headaches
Neck pain...radiates down my shoulders
numbness in my left arm
stiffness in neck
More recently,
clumbsyness
choking... not everyday but enough over the last few months that I hv noticed.

[selmaS]

  oops I forgot to post the link to the list....here it is-

  http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

[selmaS]

  Hi and welcome to the Chiari forum.

Many of the Chiari dx's were made while looking for other things or to rule them out....

Do u know if u in fact have issues with ur disks?...if so, make sure they check u for Ehlers-Danlos Syndrome as it often goes hand in hand with Chiari and u want to know b4 u have surgery if u r a surgical candidate as it can affect the way u heal.

From my DX until I got to a chiari specialist it was almost a yr....unless this is threatening ur life, take ur time and research drs and get to a true chiari specialist.

Make sure u r tested for all related conditions, sleep apnea ICP, PTC, EDS, tethered cord, ......

  We do have a list of NS's that was compiled by the members of their own drs names, the list is not meant to be a referral, just a means to help u get started with ur research to locate the best dr for u.

Educate urself on all tests and what the dr should be doing for u so u know what to expect....

FYI- Chiari symptoms do cycle so that could explain ur pain cycles....

  What other symptoms do u have?

   Glad to welcome u to our group, but sorry for the reasons u had to seek us out.

     "selma"

[dac70]

Since I've been reading up on it... it explains a lot. I have had ringing in my ears and migraines for over 10 yrs... I always thought my headaches were triggered by tension because they were on the back of my head and my neck was so tense....
So what happens now?
Plz help me understand.