Hello I had a Chiari decompression at the university of Illinois. I have Syringomyelia and my Syrinx is both extending the spinal cord and is very long as well going from C2 to T12. It’s been 2 months since my surgery. Supposedly Chiari decompression resolves Syrinxes 80% of the time according to information online, but I don’t seem to be getting any better I have a lot of pain, and have weakness in all my limbs. I also have a loss of appetite. Yesterday I went to the store and just walking around the store I started to feel worse and worse almost sickness feeling! Does anybody else experience this cause I can’t find any info on that. My pain has to be the worst though it’s mainly in my neck and middle spine. My question is should I still be feeling like this 2 months after surgery? Also if anyone has similar experiences with this disease let me know. I’m 26 and my symptoms only started in August of this year and I feel like this disease has ruined my life.
I’m interested in replies to your questions as well. My daughter was diagnosed in August and her symptoms have progressed quickly since around the same time. Her MRI showed no syrinx however one of her biggest pain complaints is pain in her neck and middle spinal area.
Hello I figured I’d respond since nobody else is. Chiari Malformation can cause a lot of problems by itself. Some people only have minor issues and no intervention is needed. You should probably have her see a neurosurgeon preferably one who has knowledge of Chiari and get his opinion on whether or not to get surgery. Depending on what he says always ask for a second opinion.
I’ve been dealing with this aspect of my life for some 10 years now, probably more as I look back. I went to 4 (FOUR) neurologists before one finally figured out the source of the problem (a side lesson in, “don’t give up on what you believe until you find the right care” BTW). I had my decompression surgery 7 years ago and I’m 51 now so I hope I can speak with some experience here. Don’t give up, medical treatments can make a very positive impact in your life! This surgery, unlike orthopedic or cardiovascular or many other procedures, can take a while to reveal its benefits, but you have to be positive. Did my procedure, in my specific case, completely resolve all of the problems? Hell no. I still deal daily with issues. But am I (we) better than so many others? Hell yes! I would recommend reading a book someone offered to me called “learned optimism” by Martin Selegman. Changed my entire outlook and life.No one said life would be easy but seriously, your attitude affects you condition in surprisingly positive ways! Hey, I’m a combat veteran so “welcome to the suck!” In other words, open your eyes and every single person will find someone better off and worse off - around them within eyesight. So, I know it’s not easy (by any means) but if you can step outside of yourself for a moment, consider the larger world around you, and compare the life you have with what could possibly be (including the lack thereof) I hope you can find solace in knowing that, regardless of your condition, there is hope and positivity. Find more zipper heads like us. Lean in on the situation, and community, and own it. Running from it is like running from that bolder in Indiana Jones…it’s gonna catch you eventually. Instead, turn around and face it head on because in the end - That bolder is you.
It has only been two months since surgery…I would like to say everything is going to be great and all issues will be resolved but it may not work out that way. I had the decompression surgery in 2011 and I still have issues. Most of the pain from my syrinx is in the left shoulder area. Sometimes it is not too bad and sometimes it kicks my butt. You have to live your life and find ways to deal with the pain. I wish you the best.
Jester, this journey is not easy. You have to advocate for yourself and don’t give up. Make sure you have a doctor who is listening to you. Change neurologists if you have to, Ask about the possibility of a CSF leak. You are still healing. I had my decompression 6 yrs ago with no syrinx and I certainly wasn’t 100 % when I went back to work at 8 weeks out.
I had my surgery at U of I as well, though 5 years ago. First of all, 2 months is not a long time. Give yourself more time. Did you have your follow up mri after the surgery? Did all look good and did the the syrinx look better? I still have pain but it is not like the pain before the surgery. Good luck and prayers to you.