Totally Confused

[kissyjam]

Hello..I finally got the "official" diagnosis of Arnold Chiari Malformation.
I say this because even though after my MVA a couple years ago, (and months of serious complaining of "real" pain) , I had a MRI, it showed that I had a cervical disc herniation C6-7. I had a fusion.  My MRI findings showed that I had Chiari and Syringomyelia. (I wouldn't have know except for a nurse friend told me that I had some kind of bubble in my spinal cord.. I even had a difficult time getting the recordsI)
I questioned it. Doctors say my pain had nothing to do with it.. and still denies till today.
I have been suffering  severe headaches classified as stress related migraines/tension headaches since the age of 12. My Chiari was at 8mm and my Syrinx was 3X6mm. My Chiari now is 13mm and my Syrinx is 9x10mm.
I am also diagnosed  Bipolar II. I take my Bipolar very seriously and am in remission. My mental health is okay so far...So there is no confusion there.I need to hang in there. I live in Maui. It is beautiful here, however I feel that my doctors are clueless. frustrating, and not very helpful. I have state quest insurance so i don't have too much of a choice of doctors. I feel that I am not taken seriously..that every time i come in with new symptoms for example, my neck pain, my numbness in my hands. I am "complaining". I am/have been very patient. I understand that they have to do all these other test to rule out other disease, which is good, because I had anemia and a thyroid disorder... and it also shows that I am not on on any illegal drugs and I don't drink alcohol.
I've been taking every type of medication my doctor been giving me, trial and error. He thought I had Lupus, some other diseases, he even thought I was being poisoned. I am not joking! For some reason its like they refuse to acknowledge that I have chiari/ syringomyelia?  I cried I am in PAIN! he finally gave me 5 mg of oxycodone 4/day.  The thing is that my doctor is part of an HMO so when I need to to the "doctor" and he is not in, I can see another in his place and they are more confused then he is.

I am reading everyone's experiences here. So far everyone here is so helpful and strong, scared, and caring. I know I need to find a SPECIALIST. Where do I start? I am already seeing a neurologist. She is very young. She just increased my topamax that I am taking for my Bipolar.. saying that is good for my Migraines.

I am single mother, with two young children. My son was just diagnosed with ADHD and my EX is just so far from understanding anything. He causes HIGH stress.. I can go into that later.

I totally understand we are all people and this is a rare disease and to have patient. I am just frustrated, scared, in pain, alone, and totally confused.

Where do I go from here? Advise? I can take it...

Thank you very much for listening. I tend to go on and on...LOL

[selmaS]

  Hi and welcome to the Chiari forum.

Ur situation and experience unfortunately r not unique....as Jen mentioned it is  not ur  location that is causing the lack of ill prepared Drs to be there it is everywhere...plus, chiari is not rare, it is Drs well educated and experienced with chiari  that r rare!!

As for the list of Drs Jen has included, it is not meant as a referral, but a means to start ur research to find the Dr that is right for u.

  I know u said ur family do not understand but try to get them on the forum....they may begin to see u r not the only one and yes...this is something that u need help with.

Many of us r mis dx'd with anxiety and stress related conditions bcuz again the drs r not paying attention to the fact our brain stem is being compressed...and it is our control center for all bodily functions.,.emotion, breathing, etc....so, the fact u have some of the dx's u do , does not mean that  is correct or once u r decompressed that may change.

Again it may not....but to have pain for so long and no one listen is enuff to depress neone...and it is not the root of the problem...pain is...pain will depress as well.

Lupus, was what I was being tested for again, when they finally found my chiari....the symptoms being similar...just like MS, Lymes...they have to rule them out.......and it is always possible for some of us to be dx'd with more than one condition.

As Jen mentioned sending out copies of ur MRI's to a few chiari drs....to see if ne of them will see u...and then look into the angle flights link as to the non profits orgs that will fly u free to see the Dr....I am not sure of the criteria to get the service....but it is worth checking out.

   Glad to have u join us, but sorry for the reasons that bring u.

         "selma"

[jenshead]

There's a list of specialists that people on this forum have put together...It's here:
http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Some doctors will review your films free of charge if you mail them.  Dr. Heffez does, I think Dr Oro does...call around to some of the Drs on the list.  They will call you and tell you if they think you should come see them.

It's not just your location...the lack of knowledge is everywhere.  Many have to travel, so that's why I suggest you see about mailing your films to someone knowledgeable.  At least that part is free!