Hi all, I had a CINE MRI done after a year with these headaches. It showed that “Cine CSF flow imaging through the foramen magnum demonstrates decreased and turbulent CSF flow just inferior to the tonsils.” Is that dangerous? Also that arthritis in my neck vertebral which range from mild, to moderate, and “severe bilateral foraminal stenosis at C5-6” and “severe left and moderate right foraminal stenosis at C6-7”. Has anyone had similar MRI results and what did you do? I wonder if I went in for surgery on my neck if it would help with the Chiari symptoms? Like maybe less stress on the nerves might help relive the numbness and tingling which is pretty much all the time now. I cant even hold a paperback book sometimes. I used to have a mind but now wonder where it went. I have fibromyalgia too so dont know if some of my troubles with brain fog are from that or what. The NS told me I can have a second opinion with the surgeon who performs the decompression procedure but I haven’t made that appointment yet…
Have you had surgery for decompression? When I had my CINE MRI it showed that my spinal fluid was sitting like a pond instead of flowing like a river. I got a shunt and it helped that problem but they put it in my back and it caused my brain to fall back into my spinal cord. Because of this I had to have another decompression surgery. I am not a doctor but I would think that surgery would help your symptoms. I would get the second opinion- waiting probably isn’t going to help- and the longer you go could cause damage that will leave you with permanent problems. I suggest making the appointment for the second opinion. If I can be any assistance please contact me. I will keep you in my prayers. S Compton
Hey, nwusa! I’ve hardly ever known Chiari decompression surgery to NOT help! Your spinal cord - probably your brain stem - is getting the pinch, causing the tingling, numbness, etc. It is your cerebellum (the bottom brain that is oozing out and making the pinch) is the part of the brain in charge of muscle coordination. When the cerebellum is compromised, you lose muscle control and drop books, etc… Thing is - if you wait too long to have the surgery, permanent damage may set in. I was misdiagnosed 10 years before surgery, so many of my symptoms remain - but nowhere near as bad as before surgery. You did mention an arthritiis… I am learning (8 years post surgery) that any arthritises are a life-long battle not fixable with surgery. And, I am beginning to wonder if us folks with soft bone and/or connective tissue issues are more genetically prone to Chiaris. I fight my osteoarthritis daily by avoiding sugars (inflammatory foods), proper exercise, and some anti-inflammatory herbs and meds when it gets over-the-top.
I guess it boils down to fear, fear what the NS may say, fear of surgery, fear my spouse will not support me in recovery, fear symptoms will get worse. I already have days where I seem to drop most everything…
Thank you may be I can get brave
Hi Beth, you raise a point that I’ve been considering myself. It is my daughter who had been diagnosed with Chiari but I often wonder if some of the genetic issues that I know I have and know run in my family may be related. Personally, I was diagnosed with degenerative disc and bone disease and osteoarthritis approximately 15 years ago. I was still young and uninterested in surgical treatment so I opted for exercise and eating well. It helped and for about 13 years I never saw another doctor about my back pain. Then, my neck began to degenerate. I exercised harder and stuck to strict keto diet. One year later, I lost feeling in my hands and arms, which should have been enough to stop me… it wasn’t, I worked harder to strengthen my body. Then suddenly I had literally the worst headache of my life and my face was numb! Well, that stopped me, right into the ER where less than 2 days later I had 2 discs replaced, 2 cadaver vertebrae added along with a fusion!!! Fun, fun… not! Move forward and it’s been a little over a year since my surgery and I’m positive if I went back to the doctor they would recommend another surgery—um, no thank you. Long story short, many of my family (especially the women) have had these same diagnoses. My mom also had Ménière’s disease and Swan’s Neck syndrome. I believe my daughter also has EDS and has technically been diagnosed with Hypermobility of all joints, we are awaiting genetic testing. I have researched the link between Chiari and EDS, between EDS and Ménière’s disease, I have to wonder if the degenerative disc and bone disease fit in there somewhere too. Thoughts?
Thanks for your responses they give me some comfort. I finally made the appointment for a second opinion. The NS says no new imaging needed…
I couldn’t get an appointment until the end of next month, now that the date is set its the waiting till it gets here anxiety. I want to be able to tell him my symptoms wont be the lingo docs use,so he can understand me stumbling over my words
In reviewing all my daughter’s medical records, I came across the summary from her latest MRI. The radiologist noted “disc desiccation at L5-S1”. Am I correct that this finding points to degenerative disc disease? I personally have both DDD and degenerative bone disease and have already had surgery on my neck. What I curious about is that seems like a major finding for an 11 yo child. Of course, no one mentioned it to me at all. I stumbled across it myself as I am in the process of finishing gathering her records for Boston’s Children’s Hospital.