“Ask the Expert: Chiari, Syringomyelia & Related Disorders”

“Ask the Expert: Chiari, Syringomyelia & Related Disorders” - Jeffrey P. Greenfield, MD, PhD

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Bobby Jones Chiari & Syringomyelia Foundation

Күн бұрын

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Dr. Jeffrey Greenfield leads a Q&A format and interview-style educational lecture for patients and families affected by Chiari malformation, syringomyelia and related disorders. Patients and families sent in their own questions about diagnosis, treatment and other issues and Dr. Greenfield answers them all in this great video!
The goal is to have more lectures, or even online live webcasts of this nature in the future! Keep your eyes peeled for more info on these. In the meantime, watch this video and let us know if you have any questions or suggestions!
For more information and educational materials, visit our website: csfinfo.org
To learn more about Bobby Jones CSF, visit our new website: bobbyjonescsf.org
See also:
Facebook: / bobbyjonescsf
Twitter: / bobbyjonescsf
Instagram: instagram/bobbyjonescsf

Пікірлер: 28

@twinky4_4 5 жыл бұрын

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.

@cecilyecily Жыл бұрын

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 .

@sandyryers2089 5 жыл бұрын

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.

@BobbyJonesCSF 5 жыл бұрын

We'd love to connect you up to their genetics team! Email us at info@csfinfo.org and we can get it done!

@sandyryers2089 5 жыл бұрын

@@BobbyJonesCSF I did email in June and never got a response.

@BobbyJonesCSF 5 жыл бұрын

@@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

@sandyryers2089 5 жыл бұрын

Thank you. Done this morning.@@BobbyJonesCSF

@Ashli-es8hi 5 жыл бұрын

Can a syrinx cause facial pain ?

@BobbyJonesCSF 5 жыл бұрын

Hi, Lana! We can definitely add this to a list of questions coming up next time we do this format.

@Ashli-es8hi 5 жыл бұрын

@@BobbyJonesCSF Thank you! Dx with TN and a syrinx. I feel that the syrinx is causing me this horrific pain. Looking forward to it :)

@tallulahahumada-king318 5 жыл бұрын

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!

@laurenreynoldsd8079 2 жыл бұрын

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