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