If only my neurosurgeons would have been this knowledgeable. While doing my Syringomyelia surgery to remove one syrinx and drain a second, he seen a third one but didn’t remove it because it was small. Well now I can barely walk and am in severe constant pain daily. The worst part is I had to stop working. My body is numb over 75% of my body and I’ve also had surgery on the back of my head for Chiari Malformation, which I was diagnosed with first. I’m 49 and I just want to be able to go for a walk, go to the park with my grandkids and be able to breathe regularly. I miss working. They said surgery can only be done as a life saving result. The syrinx is around my respiratory and that’s why they won’t do surgery.
Can a syrinx present similar in color to the cord? I can see the outline of a syrinx shape in my cord but its not white like others I see. I have severe symptoms and need to fnd a Chiari specialist in WA or close .
I am very interested in the gene study. I would love a whole genome sequence done on me. I have Chiari, EDS, Tarlov cyst disease, adhesive arachnoiditis, autonomic orthostatic hypotension, cognitive decline, common variable immune deficiency, degenerative disc disease of entire spine with degenerative schmorl's nodes and bone hemangiomas. My daughter has EDS, Chiari, progressive moderate scoliosis, dysautonomia, and possibly tethered cord syndrome and retroflexed ondontoid.
@@sandyryers2089 I am sorry to hear that! We were in the process of updating our emails, so we may have missed it. We're having issues with the info@csifnfo.org email server at the moment. Would you mind please forwarding the email to info@bobbyjonescsf.org ? We will definitely receive that one! -Kaitlyn, Bobby Jones CSF
Yes, as the syrinx can effect the nerves. Whether it be toes, feet, legs, hands, arms, torso, face and obviously back. Try and get a head MRI, if you havent had one already. Good luck! Good luck!
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If only my neurosurgeons would have been this knowledgeable. While doing my Syringomyelia surgery to remove one syrinx and drain a second, he seen a third one but didn’t remove it because it was small. Well now I can barely walk and am in severe constant pain daily. The worst part is I had to stop working. My body is numb over 75% of my body and I’ve also had surgery on the back of my head for Chiari Malformation, which I was diagnosed with first. I’m 49 and I just want to be able to go for a walk, go to the park with my grandkids and be able to breathe regularly. I miss working. They said surgery can only be done as a life saving result. The syrinx is around my respiratory and that’s why they won’t do surgery.
Can a syrinx present similar in color to the cord? I can see the outline of a syrinx shape in my cord but its not white like others I see.
I have severe symptoms and need to fnd a Chiari specialist in WA or close .
I am very interested in the gene study. I would love a whole genome sequence done on me. I have Chiari, EDS, Tarlov cyst disease, adhesive arachnoiditis, autonomic orthostatic hypotension, cognitive decline, common variable immune deficiency, degenerative disc disease of entire spine with degenerative schmorl's nodes and bone hemangiomas. My daughter has EDS, Chiari, progressive moderate scoliosis, dysautonomia, and possibly tethered cord syndrome and retroflexed ondontoid.
We'd love to connect you up to their genetics team! Email us at info@csfinfo.org and we can get it done!
@@BobbyJonesCSF I did email in June and never got a response.
@@sandyryers2089 I am sorry to hear that! We were in the process of updating our emails, so we may have missed it. We're having issues with the info@csifnfo.org email server at the moment. Would you mind please forwarding the email to info@bobbyjonescsf.org ? We will definitely receive that one! -Kaitlyn, Bobby Jones CSF
Thank you. Done this morning.@@BobbyJonesCSF
Can a syrinx cause facial pain ?
Hi, Lana! We can definitely add this to a list of questions coming up next time we do this format.
@@BobbyJonesCSF Thank you! Dx with TN and a syrinx. I feel that the syrinx is causing me this horrific pain. Looking forward to it :)
Yes, as the syrinx can effect the nerves. Whether it be toes, feet, legs, hands, arms, torso, face and obviously back. Try and get a head MRI, if you havent had one already.
Good luck!
Good luck!
I have face something ….. it’s more like a tightening feeling or like something is pulling on my upper and lower jaws in opposite direction