Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
My telephone support group met today. One of our members hadn't been on the group for a while. He is a 38-year-old guy with PPMS,.he has two children and used to be a professional snowboarder. He also was a contractor who lived in California with his wife and two kids.
I guess he is from the Massachusetts area because when he became sick he moved back here. His speech is quite slurred and he uses a wheelchair pretty much all the time for what I can tell. He works out at the gym three days a week however and that's how we found out that he used to be an athlete.
The reason for my post is that he just had this CCSVI procedure done. He had good results short-term said he could stand unsupported and walked with the Walker for the first time in four years. However it sounds, like in some cases, his symptoms have returned. He's doing everything he can and I hope the best for him.
I told him I am also considering this procedure. I already knew it's fully covered between Medicare and Medicaid. Now surprisingly he wen out of to Chicago to have it done. Usually Medicaid only pays within the state but he said it was covered there. They may have made some exception. The procedure was $56,000 and he had to pay 45 out-of-pocket cost.
I looked up his Dr.and stumbled upon this website calling themselves the reformed MS Society. It's strictly a support and information site for people having this procedure done so I thought I would post it in case anybody was interested and wanted take a look.
The jury is still out on how beneficial this procedure is, but I have done a lot of research on it. A major study is has just been completed at SUNY Buffalo, New York. The results were promising especially for someone who does it early in the disease say in the first 10 years.
I had to chuckle at the name because the MS Society, here, Canada, and the UK, from what I can tell have been very opposed to this procedure.
Take care everyone
Melanie
I guess he is from the Massachusetts area because when he became sick he moved back here. His speech is quite slurred and he uses a wheelchair pretty much all the time for what I can tell. He works out at the gym three days a week however and that's how we found out that he used to be an athlete.
The reason for my post is that he just had this CCSVI procedure done. He had good results short-term said he could stand unsupported and walked with the Walker for the first time in four years. However it sounds, like in some cases, his symptoms have returned. He's doing everything he can and I hope the best for him.
I told him I am also considering this procedure. I already knew it's fully covered between Medicare and Medicaid. Now surprisingly he wen out of to Chicago to have it done. Usually Medicaid only pays within the state but he said it was covered there. They may have made some exception. The procedure was $56,000 and he had to pay 45 out-of-pocket cost.
I looked up his Dr.and stumbled upon this website calling themselves the reformed MS Society. It's strictly a support and information site for people having this procedure done so I thought I would post it in case anybody was interested and wanted take a look.
The jury is still out on how beneficial this procedure is, but I have done a lot of research on it. A major study is has just been completed at SUNY Buffalo, New York. The results were promising especially for someone who does it early in the disease say in the first 10 years.
I had to chuckle at the name because the MS Society, here, Canada, and the UK, from what I can tell have been very opposed to this procedure.
Take care everyone
Melanie
I belong to a closed group about the procedure, they are in Canada and a lot of them have had this done and tell of their personal experiences, even though it is a closed group they always accept people wanting to know more or who are considering this be done I have a link to the group. A guy named Daryl Swain runs the group and I know some here belong to the group, I wish I had the money to have this done and have only read of one other person in California having Medicare pay, but not for the testing. Here is the link to the group. I'm not sure what you have to do other than ask to join, I was invited by another member from here but a couple of months ago they asked that anyone interested ask to join. They have good info and people tell the good and bad of the procedure.
http://www.facebook.com/#!/groups/191328180934162/
Take Care
Dave
i am just compiling info, reading websites but i cannot find anyone or anything that addresses how long results can last if there are any. i have read about improvement in the very short term, like immediate to a few months after but nothing beyond this. i know there are no guarantees with anything, but at least to read some follow up beyond 6 months to 1 year post procedure would be something. has anyone seen video or read anything?
Visit CCSVI Australia heaps of info or any CCSXI site around the world, Toronto, UK, CCSVI Alliance etc etc
You don't sit and wait OR get surgery. there are lots of ways to fight your MonSter. I've had amazing success with natural and alternative medicines and those benefits don't fade!
http://www.buffalo.edu/news/10937
http://www.patientslikeme.com/search (search ccsvi if link doesn't take you there)
DS search for CCSVI yield 645 posts
The procedure is very similar to angioplasty done for cardiac blockage. That is probably why Medicare pays for it. Medicare is a federal program and if its paid for procedures in CA, RI and IL- it should pay anywhere in the country if the physician group/hospital accept Medicare.
Medicaid is different - administered by each state. Usually it is not taken as payment outside the state of residence but RI facility takes it and IL did so who knows.
Conn- He reported that was $50,000 surgery, incl. OR and Recovery room expense. angiography equipment and supplies, OR techs and nursing staff and services of board certified interventional radiologists. Prior to this being available in the US people were flying to Poland and other destinations paying twice as much out of pocket. He paid $45 out of pocket. Regarding lasting results contact Irishb (has been quiet of late but had great outcome few yrs back). He pops up witH a post every now and then about CCSVI.
When I call I will let you all know the cost. Right now 1 trip to the ER for MS problem costs several thousand on my Medicare bill, My last Botox injection (10 min procedure) cost nearly $5000 (office procedure - no OR). My monthly urine screen done at pain clinic (to make sure I am taking drugs not selling them)...$800.
H- you are completely entitled to your opinion. Please however do a fact check before stating conclusions such as it returns, it's high risk etc.. Why would I be posting this if that was the case? Why would other members be posting their successful experiences?
There is a growing body of evidence professional and anecdotal that it helps many people, especially if done early in the disease course. And ALL medical procedures carry risk. An LP can lead to risk of bad outcomes.
Healthy diet, supplements, alt. medicine have there place. And that is what I have been doing for 20 yrs. Just about every alt. med there is. And it has helped. But it doesn't change the fact that today I cannot get out of bed without help.
I am offering this info,after 2 yrs of careful review, to people so they have a chance to avoid that kind of situation happening to them.
As with every MS option, it is a choice, and it doesn't work for everyone. However if you review patient experiences you will see what people think of this option.
Melanie
Hope you continue to feel better. My ppms support group member was so enthusiastic about the ability to stand up even!
Melanie
A big hug for you.
A big hug for you.
A big hug for you.