So I was diagnosed with Chiari Dec. 7. I saw my neurosurgeon and he wanted me to see a neurologist since he didn't think my symptoms really fit Chiari. (Headache, dizzy, blurred vision).
My first MRI said I had a 7 mm tonsil herniation. He ordered up two more MRI's- thoracic and cervical spine. The cervical MRI said I have a 5 mm herniation. I then had a second consult with him to go over these. He doesn't think my Chiari MRI's indicate a serious enough herniation to warrant surgery.
I have seen a neurologist, who wants me to have tests for vestibular problems. I've had an angiogram of brain, a lumbar puncture and subsequent blood patch and next up is a tilt table test, balance testing and consult with a neuro ophthalmologist. The angiogram and lumbar puncture did not show anything significant.
In the meantime, my headaches are now all day. My head throbs when I stand up or bend over. My head aches when I'm laying down and it's hard to get comfortable. If I take Tramadol, I have a hangover the next day. My vision is still blurry, I still have balance problems, photo sensitivity, disorientation. I'm tired all the time. I get up, eat breakfast, fall asleep at my computer, take a nap, get up, I'm groggy, walk the dog and get the mail, have another nap, I feel like a zombie.
So if my Chiari is not really bad enough to be surgically corrected, what the heck is wrong with me?
The best advice I can give- go for 2nd opinion. Maybe wait until your current doctor does all the tests. If he/she can't give you an answer on what is causing this, or you are not sattisfied with the answer, then go for the 2nd opinion. It is hard to guess what might be wrong with you, because there is so many things causing very similar symptoms. Yours sound very similar to mine, apart from falling asleep. For more than 6 months now I haven't felt better than very exhausted.
I know how frustrating it feels to be tossed between all kinds of specialists and tests. Since last July I've seen an ENT, did all kinds of testing for my ears, completed physical therapy, was referred to a a neurologist who looked at the referral request and sent me straight to neurosurgery without even talking to me (something I'm kinda thankful for), and then the neurosurgeon ordered a few MRIs and told me she thinks my dizziness is an ear probIem - so now we are back to ENT.
Have you had a cine MRI? That one shows how your cerebrospinal fluid flows. Mine showed some issues and that's what made the surgeon decide that surgery was an option if I wanted it but said it wouldn't likely fix the dizziness, just the headaches. You might also ask about Diamox. I use it when the few headaches that I do get become too obnoxious to handle and it seems to help.
One step at a time though - no matter how painfully slow and it will all get figured out. Sometimes feeling like we have no control can be so frustrating but a shift in perspective can help too. Every now and then there's moments where I can find some relief in knowing that there's nothing I can really do about it on my own and somehow in some weird twisted way, it's liberating to know that.
Oh the joy of having a rare disease... On the plus side, I'm the most well-informed patient with this malformation- all the doctors have no clue.
I got a bill from the hospital for the day I went to ER to have the Blood Patch following the Lumbar Puncture and had to argue with them because insurance wouldn't cover any of the cost because the hospital miscoded it!!
This week, I got to have a set of ear/hearing tests and a tilt table. Both are negative. The most amusing thing about the tilt table is they insisted I have a pregnancy test (as if- since I'm 57 years old, my husband had a vasectomy, and I haven't had sex since my head started killing me! Now THAT would be a miracle birth!!) The least amusing thing was when they administered some drug to make my heart go faster and then I got all shaky and started hyperventilating!! Add THAT to the list of tests I REFUSE to have again, along with the blood patch, which made me ill for weeks!!
Next up is the meeting with the Neuro-Opthalmologist! If they can't figure out what's wrong with my eyes, I'm gonna go have Lasix, which was scheduled in January and had to cancel due to all these tests.
I can't get in to see my neurologist until mid March, although, I don't know what else she can recommend next. Ready to have my head chopped off.
I'm going to apply to qualify for talking books- anybody else do that? You can get audiobooks over the internet and download them and listen on your iPhone. So much easier than checking out books at the library which are hard to read. I think I can qualify for BAD VISION! Most of the time it's just blurry, but I can easily go into full on double vision.
I think I can qualify for disability income since my "profession" is Artist. Kiss that Goodbye!!