It's been a while since I've posted. Been going through alot and seeing several doctors. I recently had a CSF flow study done and the NS says I need surgery. The findings on the MRI says abnormal decreased CSF flow is noted in the Sylian aqueduct, fourth ventricle and foramen of Magendie. The findings suggest a functional Chiari malformation. Does anyone know what a functional Chiari is?? I don't understand this....but my brain is also in a fog most of the time.
I recently had the CSF flow study also and the NS told me surgery for a similar reason. No flow was detected in the 4th ventricle and the foramen magendie. From what I understand, the CSF blockage is a primary factor in causing symptoms. My NS said he's comfortable waiting a few months, but I don't think he's particularly well versed with Chiari since the week before he didn't expect to find a blockage based on the MRI's done earlier this year. The week before, he even said my symptoms weren't Chiari - headaches, neck pain, numbness in hands, dizziness, etc. Then after the CSF flow study he says they are. Yeah, right pal, and I'm gonna let you open my head.
Anyway, I'm waiting to move ahead with a couple Chiari specialists for a second and third opinion. Sent my MRI's to the Wisconsin Chiari Institute and am in process sending to Dr. Oro in Colorado.
How are you planning to move forward, if I may ask?
I see another Neurologist tomarrow to get his opinion and to see what specialist....a NS other than the one that I have because I had 2 other surgeries with him on my lumbar spine that didn't go well. We need to see what specialist that he can refer me to that also is covered under my insurance. I need to get something done soon...the pain is getting too bad and the meds are not working. It took getting the CSF flow study for the NS to say "I guess your symptoms are Chiari related". I won't be seeing him again!!! Thanks for showing ur concern. It's nice that I can talk to people that truly understands. Kathy
and welcome back!! : )
......I went thru several drs myself and I feel soooooo much better having one I know is a chiari specialist.
I went to The Chiari Institute in NY and I am confident that I made the right choice for me.
Many do not attempt to go bcuz of insurance issues, but it is only the NS that is not participating.Call, they can tell u if ur insurance covers mosst of it.Even ur insurance company should be able to let u know.
May I ask, dou have ne other chiari related conditions?
No other conditions have been brought to my attention. The 5mm Chiari was found when I thought I still had another CSF leak, but that was not the case. It is the Chiari that's causing all my symptoms, such as severe headaches(back of skull),eye pain,numbness on left side of face,tingling down my arms and legs, dizzy and off balance and that's just a few. I don't know if they checked for Tethered cord or a syrinx during the last MRI CSF flow study. I know I've read alot of talk about these other conditions. The only other condition that has been dx has been DDD. I'm going to have to write down alot of questions for the Neurologist app't in the morning. Is there any questions that you think I should ask? Thank you, Kathy
I would ask for a complete work up....I just had one at TCI and was dx'd with a few more conditions...EDS- Ehlers Danlos Syndrome...and cranial instability.
So my list is chiari I, cervical spinal stinosis, DDD,tethered cord,mild scoliosis,bulging disks,EDS and CI with restricted CSF flow.
And it all depends on symptoms which condition they will address first, in my case it will be the TC bcuz I have more issues with symptoms associated with TC and sometimes a TC release can cause a chiari to retract and the decompression my not be necessary.I wanted to know that b4 I would have a surgey....and I pray I only need the one. My dr said if he was only looking at the brain MRI and not the rest...he would do the decompression.
I hope that helps....I have read so much and I am sure there is much more to learn on this, but I understood what was being said and could appreciate my drs suggestions.
Continue to read thru the posts here and ask questions...we'll try and help the best we can.I know u said u had other surgeries and u thought u might have another CSF leak...what kind of surgery did u have?
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