Problem is, I fear surgery. Badly.
So my “intuition” is clouded.
Mickey, have you seen dr oro yet?
Wow, i didn't fear surgery one bit because I was in so much pain. I remember thinking on some appointments that if they offered to give me surgery right then and there I would do it.
I also have conflicting diagnosis ... 4 radiologists and 1 specialists against 1 neurosurgeon's "yes".
So the thought of going in for surgery for an issue that isn't really the issue scares me.
but i'm getting closer to just doing it because I'm miserable....dizzy, ears freaking out, tinnitus, confusion, etc etc.
I am not in extreme pain. I am experiencing many of the other problems - ringing in the ear, pressure in the head, nausea, the dizziness / motion sick feeling, visual issues, balance problems, and the occasional headache. My NS wants to do the surgery. It is me that is scared stiff.
I would recommend seeking out many opinions from REPUTABLE neurosurgeons. Many of us had to travel, unfortunately. Read everything that you can find about chiari. Research doctors, clinics, and procedures. Make the most informed decision that you can.
Good luck in your quest.
I about the same as you. Mine isnt necessarily pain (although i do get intense headaches right at the base of my skull) but more dizziness and bad ear problems (fulness, pain, etc) and lack of concentration and dysphoria, etc.
Last 3 days have been in bed. Haven't moved except for today (had to take meds).
I have a call into Dr Oro's office and am setting up a Skype Consult with The Chiari Institute hopefully beginning of next week.
If I were guaranteed that this would fix my issues, I'd get surgery. But, we're not like gallbladder or appendix patients ... a lot of us don't have definitive diagnosis and without going through a MYRIAD of tests, there's no exact cause.
That's where I'm at. I'm trusting the last diagnosis from the Director of the Chiari program at UCLA ... but I am feeling even WORSE than i was before (which i thought was impossible).
Re: CINE MRI - I still have yet to get that done cause no one ordered one. Is that a DEFINITIVE test? IE, will that say a definite YES or NO re Chiari?
I had a CINE done. It is not the definitive answer for a chiari. Some doctors do not use it for a surgical diagnosis; they go by symptoms. I was told by a director of NS at a local facility and listed as a "top 15" NS in the country that even with CSF blockage, I didn't even have a chiari, He told me that it is only 5-6mm an therefore isn't classified ass a chiari. He even mentioned that he had seen 10,000 patients and NONE of them have my symptoms. Go figure. I was told by a nurse quack-titioner in Houston who does the intake for the head of the NS program at a prestigious facility that surgery would not help, I do not have a chiari, the CINE is wrong and I do have ample CSF flow, and to contact an ENT and a neurologist. Opinions vary and there is no guarantee that the surgery will fix any of your symptoms.
Do your own research. Ask questions..lots of questions. Be persistent.
Interesting.
I saw Dr Duma and when i saw him the first time ... he was pushing me towards seeing a psychiatrist. He did see ONE thing in my 2005 MRI that he said looked slightly questionable but said he needed to see a current MRI.
He told me "it's not a pretty surgery ... i wouldn't operate on you".
I had the MRI. When I went back to see him he saw I was symptomatically worse and showed me the MRI (NOT the report) images and showed me the crowding.
He changed his tune on surgery because I felt so bad (symptoms). He did say that its based on symptoms ... he's seen people with my size herniation with NO symptoms.
I have done research and am still trying to ask questions...the problem is...even as you've experience...you ask 3 specialists questions about CM and surgery and you get 4 different and conflicting answers.
If I didn't have a "No" diagnosis or had no prior Dr's telling me I'm crazy, I would describe my pain/illness/symptoms and with the exception of constant INTENSE pain and a cpl other symptoms, I'm typical Chiari...but without typical Chiari herniation.
I've noticed a big increase in my "fogginess" and concentration and cognitive function as of late. Last 3 days have been debilitating.
Dr Batzdorf, the director of chiari program at UCLA said "you are not the picture of chiari".
Not just by looking at my MRI but also looking at some vessel in my eyes. He said ppl with Chiari, that vessel cannot be seen pumping...he said he def sees it in my eyes ... which is another cancelation of Chiari for my case.
Bill ... out MRI's look so similar! Did your radiologist write on the report that you have Chiari Malformation?
I just spoke with Dr Oro's office. She said he won't even see a patient unless they've been diagnosed with Chiari Malformation on radiology reports. Which i have not.
On to the next step I guess....
Some times Oro will look at a “non diagnosed” MRI for a fee. I sent him my MRI with a check for $75. They called me back to say they would not see me so I just found another NS. Not trying to discourage you with dr Oro, just saying in case that happens to you too. Don’t give up.
Jenn