Relapse....try again.
Posted: Wed Mar 31, 2010 7:21 am
After achieving some dramatic improvements in my MS symptoms within only 5 days of my liberation procedure, starting on the 6th day it reversed. I have had secondary progressive MS for twenty years.
Presently all of my pre-procedure MS symptoms have returned. The exact same problems, with the same degree of severity. It's as if the procedure didn't happen.
My suspicion is that the internal jugular veins have collapsed back into bilateral re-stenosis.
If ever there was an experiment to test the CCSVI hypothesis, this has to be it. Open up the veins, and MS symptoms rapidly fade away. Close them back up, and the symptoms come roaring back.
The IR used the balloon technique only, and did NOT use stents. I am his second MS patient.
What I am facing now is another echo color Doppler ultrasound, and a MRV. The MRV was hard to set up; while there are many MRI machines in "northern" Illinois most of the radiologists do not know how to conduct a MRV exam or how to read the results. My IR contacted a hospital and gave them the specific CCSVI protocol for a MRV.
The MRV is scheduled on 5 April, the ultrasound on the 14th. I have a office visit scheduled with the IR on the 21st to review everything.
I am hoping to have him repeat the procedure but using stents this time for a lasting result.
What is a hopeful development is that the facility which gave me the ultrasound now has examined three MS patients for CCSVI, and is very interested in doing more of these tests. When I go there again, I will to attempt to talk to the chief radiologist to see if they would be agreeable to having their name revealed to other MS patients.
I would think that a referral from a GP would be good enough to get an exam, but that is something you would have to determine with your individual insurance carrier.
Dr. Zamboni considers the ultrasound the best diagnostic tool in detecting CCSVI, so having an Midwestern American-sourced ultrasound facility is an important initial step in MS treatment. At least someone would know if they have a venous problem or not. The next step would be to find a IR willing to operate on them.
Donnchadh
ETA: At least, the location of my venous problems were positively located so that isn't a concern AND I know that re-opening them will lead to MS symptom improvements.
Presently all of my pre-procedure MS symptoms have returned. The exact same problems, with the same degree of severity. It's as if the procedure didn't happen.
My suspicion is that the internal jugular veins have collapsed back into bilateral re-stenosis.
If ever there was an experiment to test the CCSVI hypothesis, this has to be it. Open up the veins, and MS symptoms rapidly fade away. Close them back up, and the symptoms come roaring back.
The IR used the balloon technique only, and did NOT use stents. I am his second MS patient.
What I am facing now is another echo color Doppler ultrasound, and a MRV. The MRV was hard to set up; while there are many MRI machines in "northern" Illinois most of the radiologists do not know how to conduct a MRV exam or how to read the results. My IR contacted a hospital and gave them the specific CCSVI protocol for a MRV.
The MRV is scheduled on 5 April, the ultrasound on the 14th. I have a office visit scheduled with the IR on the 21st to review everything.
I am hoping to have him repeat the procedure but using stents this time for a lasting result.
What is a hopeful development is that the facility which gave me the ultrasound now has examined three MS patients for CCSVI, and is very interested in doing more of these tests. When I go there again, I will to attempt to talk to the chief radiologist to see if they would be agreeable to having their name revealed to other MS patients.
I would think that a referral from a GP would be good enough to get an exam, but that is something you would have to determine with your individual insurance carrier.
Dr. Zamboni considers the ultrasound the best diagnostic tool in detecting CCSVI, so having an Midwestern American-sourced ultrasound facility is an important initial step in MS treatment. At least someone would know if they have a venous problem or not. The next step would be to find a IR willing to operate on them.
Donnchadh
ETA: At least, the location of my venous problems were positively located so that isn't a concern AND I know that re-opening them will lead to MS symptom improvements.