Cerebellar Thoracic Outlet Syndrome (CTOS)
Posted: Tue Jan 05, 2010 1:12 pm
Nice work on the images Curious!
Also, my friend Destiny called one of the doctors in Spain behind a study titled Neck and brain transitory vascular compression causing neurological complications. Results of surgical treatment on 1,300 patients. (link) "Cerebellar Thoracic Outlet Syndrome (CTOS) and its neurological complications, among which are ipsilateral paralysis, Parkinson disease and others." The doctor said they are now up to 1600 procedures and have been trying for 20 years to alert the world that vascular blocks even in the shoulder area can lead to neurodegenerative conditions.
So try contacting the TOS doc in your State. If they need a scan protocol, here is Dr. Haacke's http://www.thisisms.com/ftopict-9107.html More details at http://ms-mri.com
If your local facility has a 1.5 Tesla GE brand MRI machine, I can send you Dr. Dake's MRI protocol, PM me or use this email (form).
Bottom line: Don't let your doctor send you in for another MRI of MS without scanning your neck and thoracic area too. You have a right to know the cause of your condition, and diagnosis will put you one step closer to intervention.
I've found another disorder that is a "cousin" to CCSVI, called Thoracic Outlet Syndrome (TOS). This affects arteries and veins of the arm, the compression is in the shoulder area (link). The nice bit for us, TOS is well understood, there is a TOS association, and they have a list of doctors in every US State who treat it (link). Why can't these vascular docs just scoot up a few inches and look at the neck area?Plus I want to note, that Anna's scan didn't really go down far enough to adequately pick up the collarbone region, another prime suspect in our stenosis hunt.
Also, my friend Destiny called one of the doctors in Spain behind a study titled Neck and brain transitory vascular compression causing neurological complications. Results of surgical treatment on 1,300 patients. (link) "Cerebellar Thoracic Outlet Syndrome (CTOS) and its neurological complications, among which are ipsilateral paralysis, Parkinson disease and others." The doctor said they are now up to 1600 procedures and have been trying for 20 years to alert the world that vascular blocks even in the shoulder area can lead to neurodegenerative conditions.
So try contacting the TOS doc in your State. If they need a scan protocol, here is Dr. Haacke's http://www.thisisms.com/ftopict-9107.html More details at http://ms-mri.com
If your local facility has a 1.5 Tesla GE brand MRI machine, I can send you Dr. Dake's MRI protocol, PM me or use this email (form).
Bottom line: Don't let your doctor send you in for another MRI of MS without scanning your neck and thoracic area too. You have a right to know the cause of your condition, and diagnosis will put you one step closer to intervention.