Has anyone been liberated that is a primary progressive MSer

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Has anyone been liberated that is a primary progressive MSer

Postby bohemianbill » Sat Jun 19, 2010 6:22 am

Hi everyone,

Like many of you WE have received an invite to Katowice so that my dear wife can be tested and treated for CCSVI. My question is after reading all the
testimonials I have not read one that compares to Lauries 7.5-8 on the MS scale. Laurie no longer has use of her legs, upper body is strong and functional, she feels her MS is up to her belly button.

I explained all this to the folks at euromedics and they were still willing to offer her the treatment.

Has anybody else with the severity of Laurie's MS flown over seas (we are Canadian) I worry about the length of the flight, can we take her electric chair or should we consider the manual.

WE understand that CCSVI may have a very limited result for Laurie but if it just takes away the constant fatigue, reduces some of the medication she is on, we feel it would be very worth the effort. Please any feedback would be appreciated.

BB
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Postby L » Sat Jun 19, 2010 7:32 am

Sorry to hear about your Laurie. The only case that I know of is David whose Youtube channel is here: http://www.youtube.com/user/tav15h

He does not considered himself to have experienced any great improvements although he can now raise his legs higher and with more strength he says.

I think that I am at the same level of disability as Laurie, 7.5/8. I do not suffer from most of the symptoms that patients describe as having improved post procedure - no cognitive issues, no fatigue. I don't expect to be able to walk as a result of the intervention but even if my optic neuritis clears up a little, even if I only experience a tiny reduction in the stiffness in my legs it will be worth it. I am quite prepared for a disappointment but I, like Laurie I'm sure, would love any relief.

I'm an optimistic person by my optimism with this horrible illness ran out a long time ago, but the Dr's say that even people with our disability can experience some small relief, so it's worth a shot, no?

PS mammananny/Linda had a higher disability level pre procedure and a long course-of-disease history. Her youtube channel is worth a look too perhaps: http://www.youtube.com/user/mammananny .

Good luck! Whereabouts in the world are you both?
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Postby esta » Sat Jun 19, 2010 9:36 am

hi bojemian bill
i thought i wrote you after I was liberated in katawice may 6th. i have restenosed, and am not hesitating to return and pray for a stent the procedure was so great!! i think i am 8 on that scale, but all self diagnosed.

we are the ones who took an electric chair and fried the battery. i see our new battery recharger doesn't have the dreaded 'swith' so i know we'll be fine.

we flew from calgary to frankfurt to krakow. i have since learned we could have gone right to katawice. my only strong recomendation is to have her chair directly sent to katawice...we went air canada/luftansa and they were great. my other suggestion is to always stay in a chair, they will get you everywhere. they even took al, 4 of us together because of me...i couldn't imaging being left to our own devices in frankfurt, like maybe a charter airline might, but ck into it all.. frankfurt is huge...buses everywhere, but they are astutely trained in disabilites and have amazing equipment to handle them all.
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Thank you

Postby bohemianbill » Sat Jun 19, 2010 9:49 am

L I am sorry for your position. Laurie was diagnosed in 1990 and ended up in a wheel chair in 1998. Gradual but steady downhill progression.

The Liberation puts us both back on offense, the last 3 years has been more of an exsistance rather than living life. It was exciting watching the video's of Dave and Nanny. Dave is identical to my Laurie, even on most of the same drugs. Do you know were he had his Liberation?

Are you considering this option yourself? As i mentioned in my original post, we are from Canada, specifically Windsor, Ontario. I have looked at flights to Poland and it will be a 15-20 hour day. Sure wish I could find something closer. We are on a waiting list for Scotland (Essential Health Clinic) but I do not think they are on line yet.

L if you see any others please PM me so that i can follow up.

BB
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Postby bohemianbill » Sat Jun 19, 2010 10:05 am

Esta, i had a puter problem and I lost a lot of information/email, so your email must have been during all that. Thank you so much for responding again. It seems a lot of people re stenose, are we able to insist on a stent rather than plasty, its not only the money its the wear and tear on her. (I am worried about one trip and how she will handle it let alone a follow up) I guess my biggest concern is that her legs need to be elevated, does the air line offer seating that will allow her to put her feet up, do i need to buy an extra seat?

Always stay in a chair? do i bring a manual with me as well or does the airline supply one?
Fried battery what was the cause of that ? Thanks for the observation on flying directly to Katowice. I understand its a 40 minute ride from Krakow.

Thank you again, I am sure to have many questions.

BB
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Postby Vhoenecke » Sat Jun 19, 2010 10:36 am

A neighbour of mine in the small town I live in is currently in Bulgaria. He has seen quite a big improvement with his MS. His ability to talk has improved, his strength and many more improvements. I think the original thought that this doesn't work for PPMS is being proven wrong.

Val
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Postby EnjoyingTheRide » Sat Jun 19, 2010 10:57 am

I am PPMS, in a power wheelchair full time, 8 - 8.5 EDSS, and had CCSVI treatment from Dr. Sclafani in March. I've not seen any improvements, but I may or may not have stopped getting worse (and that is my goal). It will take me a few more months before I can say for sure.

Here is my CCSVI story:

http://www.enjoyingtheride.com/search/l ... ment%20Log

Also, check out this TIMS thread:

http://www.thisisms.com/ftopict-12079.html

Best of luck to you!
Mitch
Please visit my blog at www.enjoyingtheride.com
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Re: Thank you

Postby L » Sat Jun 19, 2010 11:55 am

bohemianbill wrote:L I am sorry for your position. Laurie was diagnosed in 1990 and ended up in a wheel chair in 1998. Gradual but steady downhill progression.

The Liberation puts us both back on offense, the last 3 years has been more of an exsistance rather than living life. It was exciting watching the video's of Dave and Nanny. Dave is identical to my Laurie, even on most of the same drugs. Do you know were he had his Liberation?

Are you considering this option yourself? As i mentioned in my original post, we are from Canada, specifically Windsor, Ontario. I have looked at flights to Poland and it will be a 15-20 hour day. Sure wish I could find something closer. We are on a waiting list for Scotland (Essential Health Clinic) but I do not think they are on line yet.

L if you see any others please PM me so that i can follow up.

BB


Dave was in Aalst, Belgium. Read more here: http://www.msrc.co.uk/index.cfm?fuseact ... N=13691944

I too am waiting for the EHC. See you in Glasgow! And I'll let you know if I hear of any others.
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Postby L » Sat Jun 19, 2010 11:57 am

esta wrote:hi bojemian bill
i thought i wrote you after I was liberated in katawice may 6th. i have restenosed, and am not hesitating to return and pray for a stent the procedure was so great!! i think i am 8 on that scale, but all self diagnosed.

we are the ones who took an electric chair and fried the battery. i see our new battery recharger doesn't have the dreaded 'swith' so i know we'll be fine.

we flew from calgary to frankfurt to krakow. i have since learned we could have gone right to katawice. my only strong recomendation is to have her chair directly sent to katawice...we went air canada/luftansa and they were great. my other suggestion is to always stay in a chair, they will get you everywhere. they even took al, 4 of us together because of me...i couldn't imaging being left to our own devices in frankfurt, like maybe a charter airline might, but ck into it all.. frankfurt is huge...buses everywhere, but they are astutely trained in disabilites and have amazing equipment to handle them all.


Did you experience any relief from symptoms esta?
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Postby Chris1967 » Sat Jun 19, 2010 10:01 pm

Hello Bill, I hope you and your wife are having a good weekend, I know how challenging life can be with this awful disease.
I am PPMS and 6-6.5 EDSS, I went to Sofia May 5 for angioplasty, its been a month and half or so, Ive never felt worse, MS syptoms are all worse in every part of my body.

I dont know if I have restenosed or weather this is all hog wash but I have not been coming on here and am back to living my life one day at a time and I dont want to think of even a year from now. Im sorry for this evaluation being a bummer but I have to share this at this time. I do not know if I would have done this again, although I did enjoy the company of the locals and found them to be very friendly.

You shouldnt base your descision on my experience ofcourse, but it cant hurt to know that this sort of bummer is a possibility and one your best prepared for.

Good luck and I hope this works for you wife a thousand percent better than it did for me

Chris
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Postby elyse_peace » Sun Jun 20, 2010 1:08 am

Chris -
Sorry you had a negative result. I thank you and everyone else who is sharing their individual stories. It is really hard to decide what to do. I am currently at my lowest point. Life? What life? Existence, yes. Life? I dunno.
My good fortune is that I live in NY, less than 75mi from our beloved Dr. S.
I am hopeful, but scared s_tless.
Best of luck on your journey.
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Postby trapatron » Sun Jun 20, 2010 1:40 am

Chris.
Its more cases like you out there. But its all clear i think, that bad veins and bloodflow is strongley connected with MS. In your and others cases that run out negative it must still be something with the bloodflow that is wrong. More research is a must. Your cases should back to the doctors fast for further investigation. To be checked for refluxes or whatever.
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Postby HappyPoet » Sun Jun 20, 2010 7:27 am

Hi BB,
You might find this thread to be full of hope: http://www.thisisms.com/ftopict-7672.html
Best wishes.
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Postby esta » Sun Jun 20, 2010 11:40 am

to all
i have PPMS, my changes were significant after my procedure, enough so, i am going back, and hope, once again things will improve like before.
i wouldn't hesitate. may i suggest taking the homeopathic remedy Arnica for jet lag. it's fabulous. we were up for 36 hrs. it is far worse coming home, but Arnica a few times and lots of rest and its all over in a week...
i believe, if nothing else, our jugulars should not reflux into our brain. this is why i am going back. at least then i feel i have half a chance at a good life.

bohemianbill-i have a Golden' electric wheelchair. (apparently no one else does), just make sure it gets sent all the way to your destination.

what i meant about staying in the chair is, some people can stand for security, transfers etc., i'm saying just don't...as they then deal with you in the one way and don't expect anymore from you. it's tiring enough.
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Postby L » Sun Jun 20, 2010 12:15 pm

esta wrote:to all
i have PPMS, my changes were significant after my procedure, enough so, i am going back, and hope, once again things will improve like before.
i wouldn't hesitate. may i suggest taking the homeopathic remedy Arnica for jet lag. it's fabulous. we were up for 36 hrs. it is far worse coming home, but Arnica a few times and lots of rest and its all over in a week...
i believe, if nothing else, our jugulars should not reflux into our brain. this is why i am going back. at least then i feel i have half a chance at a good life.

bohemianbill-i have a Golden' electric wheelchair. (apparently no one else does), just make sure it gets sent all the way to your destination.

what i meant about staying in the chair is, some people can stand for security, transfers etc., i'm saying just don't...as they then deal with you in the one way and don't expect anymore from you. it's tiring enough.


I'm sure that you have written about this elsewhere but what changes did you experience?
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