Change of pace

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

Change of pace

Postby scorpion » Sun Jun 06, 2010 12:29 pm

I for one would like once again to see a thread start with input from the people who have had the liberation procedure. How are you feeling? Do you agree with the the posts on this forum calling for a rebellion against the MS Society, neuros, and pharmas? Could what you are experiencing be a placebo effect or are you positive you are experiencing improvements due to the liberation procedure? Is there anything that you can identify that has gotten worse since the procedure? Would you recommend people go off theie MS medications? Have you changed your way of thinking, in a positive or negative way, about CCSVI?
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby LR1234 » Sun Jun 06, 2010 1:27 pm

......
Last edited by LR1234 on Tue Mar 06, 2012 1:46 am, edited 3 times in total.
LR1234
Family Elder
 
Posts: 1501
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby mshusband » Sun Jun 06, 2010 1:41 pm

LR ... can I ask ... where was your stenosis? Was it "NEAR" the area your chiropractor adjusted?

Isn't it semi-logical if the answer is yes that an outside force (the bone in the neck/back) could have further caused even greater restenosis (causing your vertigo)?
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby costumenastional » Mon Jun 07, 2010 3:23 am

I had it done one month ago and i cant say there is improvement worth to mention. No side effects either.
I must admit that my high expectations were not met. On the other hand, there are no regrets whatsoever because THERE WERE vein issues that had to be fixed.

Speaking ONLY for myself, i dont think that liberation is a cure, i never did, but CCSVI is something that has to be taken out of the equasion whatsoever.

The way i see it, real answers will come when "liberated" patients can post at least one year after they were operated. If we are not progressed we ll know better. All i can say is that pre op my brain was in a very bad state. If i am around in one year's time (capable of communicating) it will be a good indication that this helped.

One thing i feel that is of great importance: right before my operation i was feeling like i was in death row. Now, it s like i am in for life. Hope the governor wont change his mind cause i really prefer the cell from the "chair".

I would not tell people to stop their medication simply cause i dont have the right to do so. I am not on any medication since i have had Campath one year ago. It DIDNT help.

I do not trust neuros nor pharmas.

BTW, good thread. Hope more will share.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby tzootsi » Mon Jun 07, 2010 7:24 am

My wife has a mild case of ms, dx'd 3 years ago. Not a typical case - heavy leg, l'hermettes, slightly weak right arm, burning skin, cold right hand and foot, morning spacticity, balance issues. Symptoms fairly stable for several years. She was dx'd as RRMS, but she never had any remissions or attacks. She has resisted her nero's attempts at starting on DMD's, although she has been on LDN and the MS Recovery Diet for about 2 years. Anyhow, she had the procedure done 8 weeks ago, and here is what she's experienced in the past few weeks:
-l'hermettes is almost gone
-right are is noticeably stronger
-creepy crawly skin sensations subsiding
-morning spacticity nearly gone
-cold right hand and foot greatly improved.
There has been absolutely no down side to having the procedure done, which involved ballooning of both jugulars, no stents. She was discharged within 3 hours of the procedure.
My wife is quite pragmatic, and is sure this is not placebo. She would have it done again in a heartbeat if necessary.
How do we feel about the politics?
My wife's neruo (who was totally out of the picture as far as the procedure), is now very interested in CCSVI, and has spoken to my wife, asking her about her experience.
We feel it almost unbelievable that there is so much resistance to treating an identifiable physical problem - if you are found to have blocked veins, fix 'em! It's safe, simple, and usually helpful. We are also amazed at the lack of media coverage in the USA. We don't think there is any 'big pharma' conspiracy to cover up CCSVI, but they certainly are not promoting it. The question in my mind is - if a skeptical neuro's wife or child had ms, would they discourage them from being tested for CCSVI?
User avatar
tzootsi
Family Elder
 
Posts: 368
Joined: Sun Nov 22, 2009 4:00 pm

Postby AMcG » Mon Jun 07, 2010 9:44 am

I think Costume makes a good point about having to rule out an obvious factor like CCSVI. I have often wondered if that was what originally sparked Zamboni’s interest. He looked at his wife’s veins and thought well if I am ever going to be able to grapple with the MS I am going to have to rule out the obvious venous issues first. He then thought again “what if the venous issues are the MS?”

At the risk of sounding like an advert for Kostecki this is my own experience.

I was very fortunate in that I think I was a prime candidate. I had only had persistent MS symptoms for four years and when I relapsed I responded well to prednisolone. So I think most of my damage was not yet permanent.

I had my procedure in Tychy six weeks ago. I felt changes in sensation and temperature within an hour and a half of the procedure. I now feel very, very close to normal. I am sure no one could tell I have MS from looking at me or talking to me. All my symptoms have gone apart from dizziness. Strangely the dizziness has almost no connection to my actual ability to balance. I can balance as well now as anybody else. I can do the walk where you put one foot in front of the other easily. But I cannot do it with my eyes shut. Before my illness I could.

I am not sure if this is relevant but I used to have exceptional balance. Many times I have gone out for walks in the snow with friends who have been sliding all over and I just walked normally. I can remember leading a walk up a hill in the Lake District, in winter snow, when our guide struggled to keep up with me. When we got to the top he demanded to see what I had on the soles of my shoes. When I showed him they were perfectly smooth he was amazed. He said he was expecting spikes. My balance is not as good as that now but I am hopeful with gentle exercise and time it will continue to improve.

Another thing I do have in common with other people is that I have had a strong return of symptoms. It has happened twice. Once when I had a bad throat/chest infection and once when I had too much to drink. I was scared but it went away again quite quickly. At the moment I have another throat infection but I just feel like I have a throat infection. My throat and chest are sore. I have a bit of a headache. My energy is still OK. My balance is OK. I have just done a mile walk up the hill behind our house and I am not unduly tired.

The thing that encourages me most is the mental and visual clarity I know have. That came the day after the procedure and has never gone away. I also have good sensation throughout my body and everything feels right. My legs feel like a pair again. I feel like I am again in control of my mind and body and that feels like a real triumph. But I have to say my memory is still appalling.

The ability to cope with conversations again is another real plus. If you have had the experience of trying to follow a tv program with on-the-fly subtitles that stutter onto the screen seconds after the action. That was me before. It made joining in conversations impossible. My hearing and speed of processing has now improved to the point where I am as good as I was four years ago. My hearing is maybe better.

I would like to say something about recovery strategies. I find it strange that many people started to be very active immediately after the procedure. Sounds like asking for trouble to me. I took the view that I was getting over major trauma and had to take things carefully. When I say trauma I don’t mean the angioplasty I mean the CCSVI. The structures at the base of my brain had been under continual assault for at least the last four years. They would obviously need substantial time to recover.

So I am trying to follow the course that Roy Swank recommended for his patients. I am taking things easy, doing gentle exercise, avoiding stress, having a nap when I feel I need it. I am doing a fair bit of walking but until last week always on the flat. I am going to start some gentle yoga soon and when I feel ready I will do some weights to start putting some muscle back on. But that may not be for six months. Swank’s patients all reported good improvements when they started his regime but none of them reported feeling ‘normal’ until three to five years later. So that is my yardstick at the moment. I might add that the mild mannered Swank was very serious about his patients following this regime. If the patients persisted in overdoing it he put them to bed and sedated them!

Talking about Swank has reminded me of one last symptom. Emotional volatility. This is still not good for me. Trivial but sad news can hit me like a kick in the head. It was also the last thing to recover for Swank’s patients. They did regain emotional strength but it took a very long time. I expect to be the same.

I suppose I have to admit to being a reluctant rebel. I cannot blame neurologists for being the way they are. They will change eventually. I would much rather trust the MS Societies and the Drug Companies but there is too much evidence which makes me suspicious. The MS Societies are a great disappointment but can we really expect the Drug Companies to be any different? I trust them about the same as I do Banks and Oil Companies. If I could live without them all I would.

I really, really like evidence and intelligent, honest observation. So I am very dismayed when I see scientists who think they can dispense with it. And I am very in favour of calm rationality, it always pays in the long run. So I am happy to say Scientific Method is really a great thing. But it can be abused. So just like the MS Societies and the Drugs Companies I don’t trust scientists until I have had a chance to assess how honest and genuine they are. Zamboni passes. Freedman doesn’t.

Placebos. A very thorny subject. If you mean do I think my improvements are real and lasting the answer is easy. Is the Pope a Catholic? The difference from my point of view is huge. Do I think the improvements could be due to my own expectations? I have already mentioned my hearing improving which was not something I expected to improve. My eyes are now moist and my skin tone has improved which I also hadn’t really noticed before. I really did not expect to be able to do ‘the walk’ either. I thought that was too much to hope for. So in my mind I have no doubt this is real. But if course I may be a fool. The only real test as Zamboni and Costume have said is time. If people who were liberated a year ago could post here that would be very helpful.

Has anything gotten worse? Not really. But I do have one issue with my left thyroid gland. It is sore and swollen. I am thinking maybe I had a collateral pathway going thru it like Zamboni described in 2008. In which case it may now have corrected itself so is now healing – healing produces inflammation – inflammation produces pain? Maybe. It could just be my throat infection. It could conceivably be the beginning of a complication related to the angioplasty. But after six weeks it doesn’t seem very likely.

I have kept away from CRABS so I have no experience to base an opinion on. Obviously it is a serious step so people should discuss it with their doctor.

Have I changed my way of thinking? For myself I feel confirmed in the judgement I made to have the procedure. I also have a strong conviction that I should do something to help other people achieve the same thing if they can. But I am now wary of showing the level of enthusiasm some do. The procedure worked for me but as I said I think I was a prime candidate. If this procedure was available locally under the NHS it would be a no brainer. The travel and small but possible risks involved make it more difficult. Also there is currently no reliable way of assessing the likely improvement you might achieve. This seriously needs research.

So I am still very positive about it but I think people need to assess carefully what they are letting themselves in for and be very careful about your expectations. If you are even a very minor rebel like me I think the decision will be easy.
User avatar
AMcG
Family Elder
 
Posts: 203
Joined: Thu Dec 31, 2009 4:00 pm
Location: UK

Postby HappyPoet » Mon Jun 07, 2010 10:34 am

Hi Rebel,

This is the finest post I've ever read... wonderfully written, full of hope and laden with honesty. Thank you for sharing your experiences, and congratulations on your outcomes. I'm very happy for you!

All my best,
~Pam
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 3:00 pm

Postby mshusband » Mon Jun 07, 2010 10:56 am

Good on you AMcG.

That's great.

I think EVERYONE is going to be a great candidate for this procedure. It's just going to be doctors getting trained and up to speed on where and what to look for.

The azygous seems to be the mystery still, with Dr. Zamboni finding issues in 86% of his patients. Nobody else (based on reports we have heard) has even come close to that.

It is MY contention that the azygous is what leads to the progressing of MS. The brain is big and can be re-wired. The azygous is the harder of them ... and the spine isn't as big for re-wiring/re-programming.

Think also that the progressive stages of MS (SP & PP) both start around the early 40s.

Maybe that's just how long it takes for the azygous stenosis to really affect the body/spine.

SO ... in the end ... I think that's my take on the mattter.


WHERE was your stenosis/fix?

I really think it'd be a great idea if people who have had the procedure would put in their signature line where/what they had done ... it would make it a lot easier to track symptoms after vs. stenosis/issues in CCSVI.

At least for me.
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby magoo » Mon Jun 07, 2010 11:11 am

I have to say I think I was in the right part of my disease also, because when treated I recovered so much.
I stopped taking Copaxone shortly before my treatment as a personal decision.
I had multiple daily black-out spells with tremendous headaches before treatment for CCSVI. I haven't had one since and it's almost 8 months now. I was in constant right sided pain and suffered from stiffness in my legs and hands. Those are gone too. I was unable to focus or think clearly. I could not follow directions or read recipes, I could not have conversations, and it was severly affecting my life. This recovery has been the best for me! I can socialize and organize and cook again!!! I feel mentaly sharp and alert. The crushing fatigue I had which kept me in bed most days is so much better! Most days I can keep up with my kids and get everything on my list done. My balance was awful. I am now steady as a rock!
I also have a return of some symptoms when sick and once after the H1N1 immunization. It does take a little longer than average to recover, but when I do I am back to normal. Our immune systems are probably still over active for a time?
My stenosis was in both jugulars and I had stents placed in the blockages.
There is NO WAY this is placebo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I had hoped for more progress and less obstacles in the last year, but I still think CCSVI treatment will change MS forever. The neuros and NMSS will come around in time.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Re: Change of pace

Postby fiddler » Mon Jun 07, 2010 11:15 am

scorpion wrote:I for one would like once again to see a thread start with input from the people who have had the liberation procedure. How are you feeling? Do you agree with the the posts on this forum calling for a rebellion against the MS Society, neuros, and pharmas? Could what you are experiencing be a placebo effect or are you positive you are experiencing improvements due to the liberation procedure? Is there anything that you can identify that has gotten worse since the procedure? Would you recommend people go off theie MS medications? Have you changed your way of thinking, in a positive or negative way, about CCSVI?


I was "liberated" April 29th, almost six weeks ago. I did not notice any sudden and miraculous improvements at the time. A couple of weeks after the procedure I noticed some increased strength on my weak left side. My daily energy levels have slowly increased to where I can schedule and look forward to doing several tasks in a row rather than building up my energy to just do one thing. The physiotherapist checked me today and I seemed to have improved a bit in my mobility and balance since the time my benchmarks were set a few months ago. I cannot say, however, that these are not placebo effects. Ask me again in a year, because the real test of the benefit of CCSVI treatment, for me, will be if my deterioration has stopped.

I am not pleased with the attitude and actions of the MS Society of Canada, and feel that if the same Board with the same attitude gets elected, the organization risks become irrelevant to MSers in this country.

I am disgusted with those neuros that dismiss the whole idea out of hand without actually studying the issue. I am angry that Canadian medical organizations have forced vascular specialists to stop doing their jobs just because a patient has MS. However, I don't want all medical professionals to be tarred with the same brush, because some are quite open-minded about the possibility of a causal link between CCSVI and MS and, while recognizing that this needs a lot of study, also understand that MSers who are deteriorating quickly need to make timely treatment decisions.

A pharma exists to make money. I don't have to be conspiracy theorist to recognize that their goals may not always coincide with mine.

I am still on Betaseron, but will discuss with my neuro (who is currently studying the information I brought back from Katowice) whether I should continue the medication.

Given the information I had and the information I have up to today, I did the most logical thing when I became "liberated". I would hope that all MSers could be assessed for CCSVI and then given the option to be treated locally.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 4:00 pm
Location: Fredericton, Canada

Postby JoyIsMyStrength » Sat Jun 12, 2010 5:10 pm

I haven't had the procedure so hope I'm not speaking out of turn but I couldn't agree with this more:

AMcG:
I would like to say something about recovery strategies. I find it strange that many people started to be very active immediately after the procedure. Sounds like asking for trouble to me. I took the view that I was getting over major trauma and had to take things carefully. When I say trauma I don’t mean the angioplasty I mean the CCSVI. The structures at the base of my brain had been under continual assault for at least the last four years. They would obviously need substantial time to recover.


I told my husband that whether I have warm toes only or I'm suddenly able to leap tall buildings in a single bound post-procedure, to remind me to stay on the ground in the short term. Let's take it slow.

Pam
User avatar
JoyIsMyStrength
Family Elder
 
Posts: 164
Joined: Fri Jan 01, 2010 4:00 pm
Location: US

Re: Change of pace

Postby esta » Sun Jun 13, 2010 12:35 pm

scorpion wrote:I for one would like once again to see a thread start with input from the people who have had the liberation procedure. How are you feeling? Do you agree with the the posts on this forum calling for a rebellion against the MS Society, neuros, and pharmas? Could what you are experiencing be a placebo effect or are you positive you are experiencing improvements due to the liberation procedure? Is there anything that you can identify that has gotten worse since the procedure? Would you recommend people go off theie MS medications? Have you changed your way of thinking, in a positive or negative way, about CCSVI?


hi all
i received the procedure may 6th in katowoce poland. my r jugular vein received angioplasty. i am one of the ones who have restenosed.
i have no qualms of returning and hope of all hopes receive a stent., the results were that great, and i fully expect the results the second time to stay. i don't for one second beleive in placebo effects. ( there were 6 of us (5 canadians, one Uk), and i bet each one of them would agree, as we all had such varied positive changes.
the neurologist who saw each of us before, and a couple of days later who admittantly was a skeptic, mentioned not going off meds, and was surprised when i said i was on nothing.
my way of thinking is simply a stronger belief in CCSVI, as its been proven 95% of MS people have it (Italy & Poland, to only mention 2).
I WOULD RECOMMEND ANYONE TO HAVE IT DONE WITHOUT WAITING...do your homework and just go...
1. i agree we need a rebellion in this country. i firmly believe we should be entitled to having our veins fixed, as anyone should.
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service