Relaps 3 weeks after ccsvi operation, and NO restenosis

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

Postby colapesce » Fri Jun 11, 2010 5:38 am

hey, Nasti! There's no need to say sorry. We're all in this together and it's important to hear any news - positive or negative, and to support each other where we can. I still believe in this but have come to realise it's no quick miracle for many of us. Please keep us informed on how you're doing. I really hope you feel better soon.
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Postby vivavie » Fri Jun 11, 2010 8:17 am

I just made a very difficult choice and now I feel very sad... I just turn down July 20 in Bulgaria.
I had the procedure done in Poland on April 25 (one stent) but they could not get into my Azygos. Had little improvements that could not be placebo: saliva, regular bowels, no more hand tremors. Plus little new symptoms: periods of jello brain, left arm numbness.

For days I was wondering if I should go somewhere else to get my Azy check, but this week even the little improvements disapeared! Something may have happen with my stent.

My biggest symptoms remained unchanged after the procedure (pain, fatigue, brain fog) now I feel worse. My only wish the 1st time was to reduce the Fatigue. I figure with more energy I would do more, my brain being occupied I could cope with the pain.

I finaly decided not to go to Bulgaria because since I am back in Canada I can not get proper follow up from any doctor. "they are afraid to lose their license!!!" I have a Doctor official request for stent localisation but I can not get into a radiology clinic!!! ( Dr Lamontagne forbid them?!??!)

From what I read on Dr Sclafani's tread it is going to be difficult to get treated even in America since I am not a new patient (half liberated), I won't fit in any research profil...

I knew all the risks before my trip to Poland but decided the odds were better than the bridge!
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Postby Jaguar » Fri Jun 11, 2010 5:04 pm

Vivavie
I had procedure the day after you in Katowice. I cannot say that there has been any change - maybe, but not enough to actually believe it. But what I do believe is that it takes time. If everything that is said to justify why CCSVI might in fact interact with MS were true, then it only logically stands to reason that immediate results would not be forthcoming, but over time... yes. So I will reevaluate in September, and hope to see improvements then.
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Postby AMcG » Fri Jun 11, 2010 5:58 pm

Hi Viva

I was really sorry to read your post. I am sure you are the best judge of your symptoms. So I don’t doubt the account you have given.

As you may have read I am doing really well so perhaps I should be the last person to offer advice. But can I say that even though I feel on top of my own problem my symptoms do come back strongly at times. For example when humidity is above 40%, when I get a cold/flu or even too much to drink. It is clear to me that my MS hasn’t simply gone away.

The way I look at it I have been given a leg-up and I am now well in front of the MS and I do intend to win the race (to get better). To do that I am still doing the BB diet and supplements. I am taking it easy and having naps and avoiding stress. I am doing all the things I did before to help my MS. I hope you are doing the same. I am not expecting a full recovery for three to five years.

We were all told to wait for three months to assess the effects. I really think that is sensible. Try not to worry and follow a sensible regime. As far as the stent goes I have been saying exactly the same things to my GP. He laughs. He says if my stent had moved he would be able to tell when I walked in the door.

Let us know what you are like after three months.

Best wishes

Alan
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Postby scorpion » Fri Jun 11, 2010 6:21 pm

AMcG wrote:Hi Viva


We were all told to wait for three months to assess the effects. I really think that is sensible. Try not to worry and follow a sensible regime. As far as the stent goes I have been saying exactly the same things to my GP. He laughs. He says if my stent had moved he would be able to tell when I walked in the door.

Let us know what you are like after three months.

Best wishes

Alan


Wait three months? May people claim immediate relief. I guess it varies person to person? I have not read any posts from people who claimed relief after three months so where does this three month thing fit in?
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Postby Cece » Fri Jun 11, 2010 6:39 pm

Call Dr. Siskin's office, get on his list? He is not doing a study, just treatment. I believe he is willing to also see people he has treated for follow-ups if there are issues.

Or contact Holly at ccsviliberation@gmail.com to see if Dr. Sclafani would be able to treat you under compassionate exemption, outside of the study? I am not sure how that works but it should not hurt to ask.

Ask mshusband to submit your information to the unnamed IR that he mentioned on the "CCSVI treatment in the USA" thread? (Or was that a study too?)

That's all I got...hope things turn around soon...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby esta » Sat Jun 12, 2010 11:36 am

scorpion
the 3-6month wait comes from katowice poland advice.

hi to all
it's extremely hard to wait after loosing all the benefis.
in the interim, i asked to get on a list to go back to dr. simka and pray for a stent, and i am currently composing my letter to dr. godley at false creek clinic in vancouver to have a doppler done to see if my vein has really colapsed, praying the cost will be reasonable.

BUT...what i've notice in my 5th week of recovery - there are slight changes for the better! sooooooooooooooo

i've designed an excel sheet using percentages of improvementt for each week. by keeping track of it all i can sort of see a visual scale. from 0-100 and back to almost 0 again is deflating, but that's how i noticed my improvements...yes, rather anal, but ...

i'd like to hear from mutley, sunlounger and brynn, and how they are after being re done.

the letter i recieved and posted from dr simka on restenosing is pretty well what sofia said. i think being vigilant in our recovery is imperative even if the pro's aren't listening...yet, we can be of service for others.
we'll get to a better place,the word' time' just isn't in our vocabulary, so it's hard...
esta
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Postby blossom » Sat Jun 12, 2010 8:29 pm

so sorry to hear you guys are not doing well. hopefully that changes soon for the better. i agree with acheron about the ctos factor. i hope there are things going on behind closed doors that will make that option available to us soon. we can't all be running all over the world forever. would be great to have a one stop cures all hosp. gotta keep hopeing.
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Postby CureIous » Sat Jun 12, 2010 10:28 pm

Not sure how anyone can put a time frame on anything based on what anyone else has done, or experienced, either immediate or by months. I know I went through quite an adjustment period the first couple of months, though it was definitely trending better, it wasn't until off the thinners and maybe further than that before letting myself get comfortable in whatever the "new me" was. Doubt will ever be 100% again. YMMV needs to be the new mantra of CCSVI. Click heels and repeat 3 times. I think it helps too if you have someone to bounce stuff off of in confidence that is impartial. In the counsel of many there is wisdom.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Miia » Sun Jun 13, 2010 1:21 am

Hi everybody,

I'm another liberated patient who stresses a lot because of relapses. I had my ballooning in Katowice May 12th and I felt great after it. Then I had sinusitis and fever and I almost lost my walking.

I felt a few days well after the infection and again I feel that my both hands and feet are a bit numb. I hate this not knowing what happens next. Am I getting better or worse.

Prior to operation my symptons were there all the time. I walked but not well and I always knew that when I wake up I feel the same. I felt always as bad as the day before and there were no surprises. Now my condition is going up and down and I can't say what happens next. Very stressfull!!

AMcG wrote:
As you may have read I am doing really well so perhaps I should be the last person to offer advice. But can I say that even though I feel on top of my own problem my symptoms do come back strongly at times. For example when humidity is above 40%, when I get a cold/flu or even too much to drink. It is clear to me that my MS hasn’t simply gone away.


Alan, that's interesting. How do your symptoms vary by humidity changes? When it was sunny in Finland last week I felt great. Now it's wet and rainy and I feel very weak. Maybe humidity has nothing to do with my symptoms but it's an interesting thought.
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Postby sofia » Sun Jun 13, 2010 2:20 am

Back homw from follow up scan in Bulgaria. My blood vessels are still wide open. My relaps has gone away, and I am feeling quite a bit better again. Same with the old symptoms that flaired up during the optic nerve relaps, they are reducing every day now.

I talked with my boyfreind about it all last night, he thinks that I seem so much better then before the procedure, even during the relaps. But it is very clear I have to find the balance of how much activity I can take.

Its the little things, last night we were watching telly, and I got up to get myself a drink, I did not ask my boyfreind to get it for me :-)
He commented on it, and said he is seeing little changes like that all day every day. I'm still on my feet more, doing things for myself.

It is me that labeled the optic nerve problems I had as a relaps. My neuro wanted to wait and see if it was just an old weakness that was giving me greif or if it was a new attack. But I have had MS for nearly a decade now, I am pretty sure it was a relaps, it just wasn't long lasting.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby Kathyj08 » Sun Jun 13, 2010 6:12 am

Sofia,
I am happy to hear that things are looking up for you again and I hope things continue to improve!
Kathy
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Postby Miia » Sun Jun 13, 2010 7:25 am

Sofia, I'm also happy for you. Nice to hear it wasn't restenosis.
I hope I've got only stress causing me numb feet and hands and not restenosis. I just have to relax now.
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Postby Shueywho » Sun Jun 13, 2010 8:09 am

I am so happy for you Sofia. There is still so much to learn about this procedure and it is good to see that even when you think it is going down, it may just need some time. I am a fan of yours.
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