I was diagnosed in late April early May 2013 with CMI 6-7mm herniation right cerebellum tonsil lower than left. Having my third MRI in 10 years due to almosty daily headaches, blurry vision, and balance issues. At first I was almost relieved to finally have an answer. Then I went home and started my own research & realized I had been having symptoms as long as I could remember. That being said scince early April it has been getting progressivley & dramatically worse. However I am very conflicted about having surgery. My NS Dr. Luciano at Cleveland Clinic has agreed that surgery is reccomended but he also advised me that its my choice & explained all my options along with risks both ways. I do realize that the choice is completely mine & only mine and this site has been a huge help as far as helping me know I’m not “crazy” that what I feel is real. I swear for most of my life I just excused it all away. Trust me being a mother of 5 (18, 16, 14, 13, 12) it wasn’t hard to find a reason to be tired or have head/neck pain…lol I actually have a second question also both of my previous MRI’s results came back completely unremarkable??? My question is does that mean I still had CM & it was just to small to see??? They were done in 2004 & 2007 don’t know if that makes a difference.
Hi Stacey! I was also recently diagnosed with CM (7mm). I have had several MRI's as well. Some of them have said unremarkable, like my brain MRI. The cervical MRI report is the one that shows the CM diagnosis. I also have herniated discs, spinal stenosis, degenerative discs, and mild scoliosis. Do you have any spine issues? My doctors are trying to see whether my symptoms are being caused by something else besides the CM first before discussing surgery. My Neurologist wants to try everything else possible to get my symptoms under control so I won't have to have surgery. Many different people have said that surgery is really a gamble. It does not always work, and could possibly make you worse! Sometimes you will have to have many surgeries over the years. It is a big decision. Definatly do as much research as you can. If you cannot get your headaches under control, as well as the other issues, you may want to go the surgery route. I just know that I want to try everything I can first. My quality of life is pretty bad at this point, but I'm going to keep trying for awhile. I can barely leave the house these days. I'm in pain all of the time, and my symptoms list keeps growing. But I have faith that I can get through this and any other issues that come my way.
Please let us know how you proceed from here! You are definatly in the right place! Lots of luck to you!
I never had much luck controlling my symptoms before surgery...but I can't take pain medication due to severe gastritis. Some people can get by taking pain medication, meds like Neurontin or Lyrica help control some of the nerve related pain like burning or stinging pains or tingling and numbness, also an anti-inflammatory diet may help control symptoms (some people use Dr. Weil's diet others go the Paleo route). Scaling back on activities and getting more rest can be helpful. It's really trial and error as we all seem to respond to different treatments. Luckily it sounds like your doctor is willing to work with you on this! Make sure you have frequent scans because with poor flow of csf your condition could change quickly. You don't want to cause lasting damage!
Best wishes and keep us posted! :)
Thank you all so much… Abby to my knowledge I don’t have EDS however I’ve never heard of it till now. So I will ask my PCP when I see him next week. I will also look at t he WACMA. Kmeloyda I have had 3 brain MRI’s which where the ones I was talking about. However I have also had a cervical & lumbar but no thoracic. I do have a few herniated discs that I have dealt with for years however the pain I’m experiencing the last few months is completely different. I have also had an EMG done on my arms (zero fun) & a couple CT scans of brain & neck. Trust me I’m not rushing into any surgery hence why I’m asking about alternatives. I have honestly had a very rough couple of years health speaking. In 2011 I was diagnosed with Renal Carcenoma & went thru several months of treatment to finally be cancer free as of 1/22/13. However now with all the tests I’ve been having due to CMI my blood work is comming back" irregular" and I just had a bone marrow biopsy last week so fingers crossed & many prayers being said it will come back negative. Because to be honest if the cancer is back surgery won’t even be an option at this point. But the pain I’m having & balance issues are making it very difficult to do much of anything these days. I am trying the best I can to stay strong & positive but the more days I have being in such pain and feeling like a burden to everyone the more I want answers am considering surgery as a form of treatment.
Sending prayers for you! I’m sorry to hear that it’s been such a rough couple of years! Please let us know when you hear anything!