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Thought I'd share ... A news spotlight on two Canadians who went to Albany Community Care for their procedure. http://swo.ctv.ca/provincewide/
Cheers, Phyllis
"A journey of a thousand miles begins with a single step." Lao-Tzu
My husband had his procedure this morning with Dr. Mandato. It was a very positive experience. The nurses and Dr. Mandato were all very kind and professional.
My husband had over 50% blockage in each of the right and left jugulars, so Dr. Mandato ballooned there. He also required ballooning of the azygous. Also, apparently high up on the left jugular, the carotid is pressing down on the vein. He tried ballooning there but is not sure it will hold.
I was impressed by how research oriented the group is. They plan on learning a lot more in the next few years and hope to make the procedure more useful. They are very proud of the trial that they're beginning.
About the chances of improvement, according to the doctor, the chances are still 1/3,1/3,1/3. I asked about the 15-20% that someone mentioned, and the nurse practitioner said that someone must have been speculating based on what they've noticed during their shift. So, we still have pretty good odds!
Guider's son went in after we did. I was thrilled to meet someone else going through this! They seem very nice.
My husband doesn't notice any change, but it is early!
My wife was treated on 12/17 by Doctor Mandato at Albany Medical Center. The Doctor and staff were wonderful. Both jugulars had stenosis and were treated with angioplasty. So far the early changes are:
Severe right hand tremor gone - able to write name for the first time in several years.
Less slurring of speech
Night leg spasm's decreased
The doctor was encouraged and we hope that her ability to stand and walk will improve. Her edss is between 7-7.5 at the moment.
Just got my phone call yesterday 1/03/2011 for my appointment with Albany Community Care for my CCSVI procedure. I'm from the U.S. and have medicare and private health insurance. I was told that the procedure would be at the Medical Center and that they will file with my insurance. I contacted Dr. Siskin's office 8/10/2010. My appointment for the procedure will be on 2/03/2011 with Dr. Mandato. Beth, with the office, told me that they will send me an eMail in a week or so with details. I have had MS since 1973 but was not diagnosed until 1985. My disability status score is about a 6.
I accidently started a new topic on the forum instead of posting here to report on my procedure on Monday with Dr. Englander.
Everything went well - it took a little over an hour and she found one blockage in the left jugular just below the clavicle. It had to be ballooned twice as the first time the balloon wasn't centered properly and did not open up the vein - the second attempt was successful. It was virtually painless except for the expected pressure when they inflated the balloon.
Initially, I was surprised that when I stood up I felt that my feet were on solid ground for a change and did not have the feeling of being off balance. I also noticed that my vision was very clear. I had tried not to have any expectations so I was pleasantly surprised by these two observations.
I was quite tired though as my appointment was was at 7 AM and I had not slept much the night before, so I just rested that afternoon at the hotel. When I got up later for dinner I was still quite tired and felt dizzy much like I used to feel. I think it is really too soon to tell if I have had any benefits from the procedure, but I am optimistic that there may will be changes in the days to come. I will keep you posted.
My wife was treated by Dr. Englander on Dec. 1st. She showed improvements after a few days and she is still improving slowly, so be patient.
We kept our expectations low. The improvements to her balance and to her arm pain have been good but she is not "cured". Regardless, these improvements seem like a miracle. When you have a degenerative, incurable disease and then you start to improve... it is easy to see why there is so much hype. It is truly amazing.
We know that the improvements may disappear and we pray that they don't, but I have seen what this procedure can do and I am confident that it will be refined and that we will benefit from these improvements in the future.
Thanks for encouraging words. Immediately thoughts of re-stenosis come to mind but I have to remind myself that it is still early days and things can still improve. But even if they don't, that's OK because I went into this knowing that 1/3 patients experience no change in symptoms. I am just grateful that the procedure went well and without complications.
Other thoughts that come to mind are whether I was undertreated. Perhaps if larger balloons were used and if it were inflated for a longer period of time, would it have made a difference? The mind can go crazy at this point!
I think I should just relax and turn off the mind and be thankful for all the support I've gotten here and from others in my life.
Its Joegeologist again. On January 4th I posted that I had received my phone call from Beth with dates for my procedure at Albany Community Care. Today I received my pre-procedure call from Dr. Mandato. My appointments for doppler ultrasound on February 2nd, procedure on February 3. and repeat of doppler ultrasound on February 4th, are still on the schedule unchanged.
When I talked to Dr. Mandato regarding follow-up ultrasounds (since I live all the way in Colorado), he said it was no problem. For their out-of-town patients, any large hospital should have the necessary ultrasound equipment to perform the follow-up. The follow-ups are not for the purpose of diagnosis using the Zamboni criteria, so no Zamboni methodology training is needed. Dr. Mandato will provide the locations to the operator where the procedure(s) was(were) performed and that need inspecting to check for problems. The ultrasound operator does not need to know anything about the MS connection, its just follow-up for a vein angioplasty.
joegeologist wrote:When I talked to Dr. Mandato regarding follow-up ultrasounds (since I live all the way in Colorado), he said it was no problem. For their out-of-town patients, any large hospital should have the necessary ultrasound equipment to perform the follow-up. The follow-ups are not for the purpose of diagnosis using the Zamboni criteria, so no Zamboni methodology training is needed. Dr. Mandato will provide the locations to the operator where the procedure(s) was(were) performed and that need inspecting to check for problems. The ultrasound operator does not need to know anything about the MS connection, its just follow-up for a vein angioplasty.
This is news to me. I never heard that the follow-up doppler could be performed by any ultrasound technician. It doesn't make sense to me since the follow-up is to look for signs of restenosis (I thought).
My wife is not planning a follow-up. Her original ultrasound showed only one criteria so she would have been considered negative for CCSVI. She then had the venography and had both jugglers ballooned. She has had great improvements since the treatment.
If the improvements disappear then we will consider going back to Albany for the full treatment again.
Scotland;CAN;June;Nov15: Mandato 
