You could not of pin-pointed my exact symptoms any better. I know what your feeling, it is extricating. Your post was from 2011, I would love to hear an update as far as any treatment you may of found that has benefited you. My NS said my Syrinx from C-2 through T12, expanded in width at C-4-C-7; causing nerve damage beyond my spinal cord to Thorasic Ridiculopathy and it causes the radiating pain and restrictions you described for me as well. Be Strong, Praying for Stregnth.
Hi and welcome to the Chiari forum.
Looks like you got some great info from the above 2 posters....I wanted to welcome you and offer you a link to the clinical trials....this link is to a thread I posted not long ago and there is a link to the trials in the thread.
http://www.medhelp.org/posts/Chiari-Malformation/clinical-trials-are-recruiting-now-/show/706710
Please feel free to ask more questions or just chat about symptoms....know you are not alone <3
Hi glad to get an update of sorts on you....and would love if you continue to post info you learn thru the clinical trials experience...Dr Heiss is a good person to be seeing...I do post about the trials on here from time to time and so glad to see someone is benefiting from them.
Hi Gerda,
I'm sorry to hear you are going through this. Since I last posted here, I have learned a lot about syringomyelia (SM) and my options. I do not have a chiari malformation so in my case there is not surgery of treatment that would positively change the dynamics in my spinal cord-which Ron above describes very accurately. In my case, whatever created a path of least resistance in my cord that ultimately caused a syrinx to form is unknown, and quite possibly a birth defect, according to several docs I've seen. I am in a study at the NIH and have learned a lot through that process. I get MRI's every year at the NIH and analysis by Dr. John Heiss of the NIH who has made a career of studying SM and Chiari. He basically records changes in the syrinx, and keeps track of what pain I report and observes my neurological functioning. Fortunately, I've remained stable for the last few years.
My syrinx has narrowed and lengthened slightly since 2012. It's unknown what effect that will have on me or what the future will bring. I still have mid-scapular back pain with any kind of impact exercise (running, jumping, dancing) and sternum pain in general but I walk 20+ miles a week and I feel very good. It's been helpful to stay active, lift weights to fight the weakness and I try to keep a positive attitude and ignore pain and symptoms when I can. If there's nothing to be done about it, I might as well go on with my life! I've been told there is nothing that will make it worse, particularly, so I avoid the activities that really hurt and embrace what I can do.
I encourage you to find a doctor who understands SM and Chiari. You might even look into the NIH study. They are still looking for participants and they pay your expenses if they accept you into the study. You can find out more about the study by googling NIH and looking for the link to Clinical Trials on their website.
I wish you the best!
Hi, this is an old post. A syrinx can cause problems at and below the level of the Cyst in the spinal cord so if you have a syrinx @ C4 it will cause problems at this and below this level.
A syrinx is a result in most cases of an obstruction of the CSF the fluid that flows around the brain and spinal cord, The fluid follows the path of least resistance witch is into the center of the cord. Finding and treating the cause would be the best option and to do this you need a doctor who is experienced in SM & CM...
I just read your note and I am so sorry to hear. I was just diagnosed with a syrinx of the whole thoracic area and multilevel degenerative disease. I am not sure what will happen next. The medical field still needs to do a mri of my cervical region.
I also wanted to find out if a syrinx could cause extreme pain in the sternum and sure enough I see your post. Thank you for this . This gives me some comfort and makes me feel I am not alone. The backpains and weakness, numbness are every day and it *****. Good luck to you
Gerda
hi, i just read about your issue, and i am also having chest pain with my syrinx just like you describe but no one wants to believe its a syrinx issue, also lacated in c-spine that was very huge, but i believe wholeheardtly its the syrinx ive been to the er they ruled out heart attack, oh i had surgery also and still is having the pain, but God has been so good to me! Just wanted to let u kno you are not imagening things i also experince bad chest pain, all though i can say my back doesnt hurt any more, it has improve but seems the pain move to my chest. Be blessed and Pray!
Thanks, Selma...
I've had Dr. Oro and Dr. Heffez,as well as Dr. Falci of Craig Hopsital in Denver all look at my MRI's and confirm I don't have Chiari, or a tumor or any known trauma. But I have had an active life so I've fallen skiing or been in rough ocean waves, etc...I was in some minor traffic accidents, but none where I felt injured. I'm told its possible I was born with it. I'm 51.
I'm also told it's very large in diameter as it completely fills the spinal column.
My chest pain is remarkable and hurts if I use my arms or chest muscles. It"s hard to do avoid that! My back pain is also unyielding. It is a stabbing pain between my shoulder blades that hurts even more if I twist, or lift something, or lean over.
I'm lucky to have made it this far in life, I guess. My pain didn't really start until about 4 months ago. Prior to that it was only with certain activities. After body surfing in December, I've been in constant pain.
It is such a relief to find this website and talk to others who have similar issues.
Thanks, Amy
Hi...sorry u r dealing with this...I know just from others that it can be both issues, the syrinx and u could have costochondrits. It all depends where ur syrinx is....if it is impinging a nerve.
I have heard of a few others that did have costochondrits as well. Sticks that u would have a few diff things going on at once, but that can happen too.
Since ur syrinx is idopathic, did they do testing to rule out chiari?...I am sure I asked this already...sorry I can't remember.(chiari).....Were u ever in a MVA? had a fall, or an injury.....
"selma"