Hello everyone. I am new here. And chiari is new to me. It is a little confusing to me. I started with a mild to moderate frontal headache 11/26/12 which has never stopped. And I understand this is not the typical chiari headache. Have since had other symptoms, some that come and go, some that stay, like dizziness, nausea, extreme fatigue, arm/hand weakness, tachycardia, hoarseness, memory problems and general brain fog, difficulty concentrating. Neurologist says it's a migraine, but neurosurgeon says it could possibly be caused by the chiari. MRI showed 9mm tonsilar herniation. No syrinx. Neurosurgeon sent me back to neurologist and wants me to try different meds and says if none work, then will discuss surgery. What do you think? Or what was your experience?
Neurologists are notorious for blowing off Chiari. I don't know why, it's crazy.
Not everyone gets the classic headache in the back of the head. The bottom line is what the MRI shows and your overall symptoms, imho.
I was fortunate that I didn't go through months and months and years of doctors sending me back and forth, I was diagnosed in June 09' and had my decompression in aug '09. I never even went to a neurologist at all, I went straight from my PCP to my neurosugeon- I was fortunate that my PCP just happened to have had another patient with Chiari.
My stats: (7 mm herniation, no syrinx, relentless headaches, numbness, hearing loss, pain in shoulder and arm) OTOH, I had issues for years that probably were Chiari related (like the RF cardiac ablation I had for PSVTs, for example) so I did go undiagnosed for a while, but once there was a neurological connection made things went quickly for me.
But, most people end up in the doctor ping pong game, it really sucks. I think the worst part of it is the emotional toll of making you feel crazy and like a hypochondriac.
I hope you can get relief soon.
Headaches were not my worst symptom and when I had them they often presented more as pressure behind the eyes. I thought they were sinus related for years and years and kept going to the doctor saying I thought I had a sinus infection. Pretty sure they were chiari related because they have almost been eliminated since surgery.
I just had the surgery, but was diagnosed in 1999. Until late last year my symptoms weren't at all disruptive and most of the time didn't even warrant visiting a doctor. I just dealt with the occasional intense headache and walking into walls. In November 2011 I was in a car accident and things got very bad, very fast.
The last year of my life has been utterly miserable with my PCP attempting (unsuccessfully) to treat each individual symptom. A dozen drugs, test after test, a "headache specialist"... she claimed to know about Chiari, but at the same time I don't think she actually believed me. As soon as I found out that my insurance didn't require a referral to a neurologist I made an appointment on my own because I was tired of the trial and error approach. The neurologist was fantastic and immediately referred me to a surgeon, who told me that my Chiari was due solely to my weight (I'm about 70 lbs overweight, but I was this heavy long before my symptoms started) and refused to treat me.
I got really lucky with my second opinion, and it only took him one visit and a look at my MRI to propose surgery. My stats - 2 cm herniation, frequent (like, a couple times a week) debilitating migraines, numbness/tingling, occasional temporary hearing loss and ringing in my ears, neck/shoulder/back pain, gagging, vertigo, nausea, vomiting, sleep apnea, balance problems, trouble with concentration, blurred/double vision. I basically felt like I was drunk or hungover at all times.
I really hope you don't have to go through all of this before they find something that works for you.
Thanks so much for all your replies. Yes I have been in the ping pong game, and the NL (or it's actually the NP) does not think my symptoms are related to chiari. Yes it does make me feel like the "crazy, hypochondriac". I have tried several meds. Now am on an increasing dose of topamax. Scheduled to increase tomorrow morning and I am afraid it will make me drowsy. I am off work the next two days, and hope I will be okay by Friday for work.
By the way, how did you cope with work if you did/do work? It looks like each of you have had the surgery I think if I remember what I read. My mind is pretty fuzzy. I am having some difficulty at work. Memory problems. Found a couple of errors today. Oh and today I had a new symptom, flashing white spots in my peripheral vision a couple times.
No I have not had the cine-MRI, but I keep hearing about it. Why don't doctors just order this? Are they just waiting for symptoms of syrinx? Is this a difficult test to perform or something?
If you had the surgery, are you glad you did? And how was your recovery? When did you return to work if you work?
It is such a relief to connect with people who understand. Because no one else out there understands. Thanks for listening. :)