I have been hearing some crazy comments about the liberation treatment and I would like to clear some of them up. I know a Doctor who has been asking patients "Why would you pay $10,000.00 to get warm feet?" I paid $10,000.00 and went to Poland to be liberated because my own country refused to treat me. It was my hope that the treatment would stop progression and further attacks. That was all I was hoping for. My warm feet and hands were just a wonderful bonus as far as I'm concerned.
In addition to that perk I also regained my balance and lost spasticity in my legs and feet. For years I had neck and shoulder pain and stiffness that I thought was due to a car accident I had a number of years ago. Well guess what? It was spasticity. After my treatment my neck and shoulder loosened up! My right leg was my weakest and I walked with a limp and had foot drop as well. I would fall down several times a day as my leg got fatigued. This disappeared as well. I can walk much further now before my right leg gets tired. It's still weaker than my left but I'm hoping that with time it will get better. The numbness and tingling on the right side of my body has gone also, along with my terrible heat intolerance.
I know so many people who have had the treatment and are experiencing the same things. Even people that were a lot worse off than myself are finding that they no longer need their wheelchairs and walking aids. They have fired their home care helpers.How can someone so callously imply that the treatment will only give you warm hands and feet?
Another comment I keep hearing is the treatment wont help SPMS or PPMS patients. I believe this is incorrect. If the treatment can stop further attacks and halt progression of the disease I would say that is a huge benefit for PPMS and SPMS patients. Perhaps they wont have the "perks" that so many of the RRMS patients enjoy but maybe that is due to the extent of their neurological damage.
It will be many years before we will know if the attacks and progression have been stopped for certain, but I and many others are willing to take that leap of faith. Dr. Zamboni's wife is reportedly doing extremely well and she had the treatment a few years ago. I also heard that she is NOT taking MS drugs but I cannot verify that information at this time.
Can all of this be placebo effect? Doubtful. Bladder and bowel function, along with balance and gait cannot be effected by our minds. Could we have gone into spontaneous remissions, all at the same time right after the treatment? I wonder. If that could be true then why hasn't this phenomena occurred with any of the drug treatments we Ms patients have been paying big bucks for?
Based on the current research and overwhelming anecdotal evidence I believe the treatment is helping. This is why I am fighting to get our government to help fund and fast track the research so all Canadians with MS can have warm feet.
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Well said and !!!! on your continued improvement!
ReplyDeleterespecting that you are a very busy woman.. don't forget to let me know if you are in Vancouver.. phys sis in the wings waiting to assess.. :) go go go !
Patti
p.s. apparently "a Rose by any other name is NOT" .. this guy could use a visit from Mary Poppins..
A little humor at the end, love it. Congrats on your continued progress and for getting the word out and keeping the hope alive. You've become quite popular on the net, I have seen your name in many places. I hope that all ms'ers who have this procedure done can try to find a way to get the word out. Thanks for all you do. shawn
ReplyDelete@Patti- My hubby gets home around the 19 of May so it will be some time after that. I also want to go to False Creek during this trip as I want to get Dopplered again just to check if everything's okay with my stent.
ReplyDeleteThanks Shawn :D I would be dead today had it not been for humour
ReplyDeleteThanks Ginger......you rock!!!
ReplyDeleteI have SPMS and I'm inspired by everyone that's been "liberated". I just hope to stop the progression of this curse; taking over my body like wild fire. The curse I've had for 22 years. I'm so happy for you, Denise, Karla....
ReplyDeleteThe cost for one year of my copaxone was $15,600.00 and it NEVER made my feet warm!
ReplyDeleteWarm feet and not having to go to sleep with a heating pad year round would be wonderful. Getting off drugs that stop spasms, not injecting Avonex weekly or having to hibernate when humidity is high would be grand. Walking without a limp - worth $10,000 - you becha! Just ordered a pair of mukluks from Moose Factory until I can get an appointment to get my veins repaired!
ReplyDeleteBTW, Who is keeping track of you and all the other folks worldwide that have already had the treatment Ginger? Those stats will be priceless. I would love to see a list of everyone who has been liberated or at least in one group so that the rest of us can keep track and add our names as we too get our appointments confirmed.
Thanks so much for this blog.
I don't get why you would continue taking DMD's if they didn't work BEFORE the procedure? It makes no sense. I think they're just trying to placate the drug companies so they'll put up less resistance. It's like giving a baby a bottle to keep them quiet. Dr. Zamboni also doesn't know the long term effects of the liberation procedure because it's so new therefore he doesn't want people stopping their meds right away.
ReplyDeleteNo placebo effect could make someone walk better, see better, blance better, and the list goes on. But in the unlikely chance that it is a placebo effect, I would more than gladly pay that $10K. Heck, my drug currently costs me almost $40K a year. 10K would be a drop in the bucket.
ReplyDeleteCongratulations Ginger on everything proceeding for the better for you.
ReplyDeleteMy husband has MS and has constantly had doors closed everywhere he has turned. When he contacts the MS Society they just tell him to talk to his Dr who tells him to talk to the UBC Dr who says we can do nothing for you go back to your family Dr. He has SPMS since 2001, nothing has been offered to him, and I mean NOTHING, no medications at all until he went to a walk-in medical clinic on an unrelated visit and a Dr offered him LDN. Could you give a step-by-step of how you eventually got to your appt in Poland. He desperately wants to have the CCSVI done and I would like to get something in motion for him. Thanks Dee Dee
Hi Ginger - today I just began watching the online recording of the April MS CCSVI and MS Info session and thought - this treatment is going to be a LONG time (read possibly never) coming to Canada! I have heard about Poland on CBC and voila arrived at your site. Sorry I haven't had time to read your whole blog but you appear to be a mentor for those that want to follow your path. Knowing what you know now, what would you recommend to someone just starting on this? Go to False Creek for testing first? What did the testing cost you and how long did it take to get an appointment? How did you apply for treatment? I see that Passport Medical seems to be a liason for this? Did you use them or can you book direct? What travel and medical insurance did you take out? I live in SK so wonder about the airfare cost, etc. Suggestions on what to bring to Poland? Can you provide the works in a "by request" special edition blog - CCSVI in Poland for dummies? Thanks Ginger you are an inspiration! Kari
ReplyDeleteWell said Ginger Dear! You are a hero of mine!
ReplyDeleteBRAVO!! I so am looking forward to warm feet and yes this is priceless :))))
ReplyDeleteHi!
ReplyDeleteDr. Zamboni's wife still uses injections. He said so at the web forum I watched two weeks ago and he did say that people shouldn't stop, even if they have had the surgery. This was a disappointment to me as the critics will say those people are only better because of the drugs and not due to the surgery.
I was at a demonstration on May 5 and found out the MS society bought the domain name ccsvi.ca but aren't using it. Doctors in the US and Canada are no longer doing the surgery due to threats that they will lose their insurance or hospital privleges.
The next step is a plan to launch a class action suit against the Canadian government for denying this right to patients.
I support that because going to another country for surgery just lets our crappy government off the hook. We need to pressure them to allow this simple, effective, inexpensive, surgery here.
Hi Ginger....thanks for your updates - really appreciated. I'm booked in for an angioplasty on 26th May - all being well. I'm 55 and was diagnosed last year. I think that MS symptoms generally progress faster for people who are diagnosed later in life. I dont have a lot of symptoms yet - the heat intolerance is the worst. I have 50% stenosis in my right jugular. What do you think about having the angioplasty sooner rather than later?
ReplyDeleteI have not heard those crazy comments about the liberation treatment and I would like to certainly clear the space. I believe that this comment of a so call Doctor who has been asking patients "Why would you pay $10,000.00 to get warm feet?" is totally out of contest. Why patients should take the abusive ways of a country? Why can patients get the Health Services they need? Why is difficult to understand that patients regained balance and lose symptoms. It will be many years before we will know if the attacks and progression have stopped for certain, but I and many others are willing to take that leap of faith. Dr. Zamboni's wife is reportedly doing extremely well and she had the treatment a few years ago. I also heard that she is NOT taking MS drugs but I cannot verify that information at this time. Certainly, could be true when this phenomenon has not occurred with any of the drug treatments we MS patients have to pay for? The treatment is helping. This is why I am fighting to get our government to help fund and fast track the research. All MS Patients should have access to the procedure.
ReplyDeleteAll MS Patients should be involved because we have a major contender and this is the World Economy and the Financial Crisis.
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