Relapses after the liberation treatment?

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

Postby sou » Mon May 31, 2010 1:46 am

Not even in 240000000000000000000000 hours, actually...
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby L » Mon May 31, 2010 2:55 am

sou wrote:Not even in 240000000000000000000000 hours, actually...


I think that's a little pessimistic perhaps. That's quite a long time. I should hope that medicine has moved on by then.

I'm sure that I read somewhere that exercise encourages axonal regeneration/re-routing (ties in with the story of the wheelchair bound girl who became a sporting champion - wheel chair basketball? Sprinting? - and regained the ability to stand, walk and then run. Although it could all be to do with improved circulation I suppose. It may not even have been a correct diagnoses in the first place!) A study also showed that learning how to juggle (!) does the same. Learning new skills in general does this always, and learning a language is a very effective means encouraging generation. Whether or not it creates a better environment for axonal regrowth across the whole brain, I don't know. But I think there is room for a tiny bit of optimism.

Addressing CCSVI, if the hypothesis is true and toxins are accumulated over time, may clear toxins in time altering the environment of the sites of damage to one that is more favourable toward regeneration.

It's worth considering too that if treatment for CCSVI does fulfil the promise of preventing relapses then the companies currently producing the drugs that attempt to do this will be much more interested in developing drugs to repair damage.


These two links which follow are a fairly flimsy basis for optimism, I know, but still..

wheelchair bound girl's recovery:
<shortened url>

juggling:
http://www.medicalnewstoday.com/articles/167052.php
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Postby Vivianne766 » Sun Jun 06, 2010 12:43 pm

Quote:

You would make a ship sail against the winds and currents by lighting a bonfire under her deck... I have no time for such nonsense. --Napoleo / You would stop MS by opening up a vein... I have no time for such nonsense --My neuro


WELL SAID Sou.
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Postby sofia » Sun Jun 06, 2010 1:40 pm

Procedure 12th of May 2010
Stedy but slow improvments untill 20th. Fatigue went away. Vertigo remained, same with the little urgency I had started last few weeks before operation.
21st of May vertigo went away, came back when tiered, but went again after little rest. Never came back full on. Was up and about beeing very busy until last weekend in May. Was i getting on probelms? Was my vertigo increasing?
Tuesday 1st of june ON issues defenetly! Vertigo Defenetly back!
Relaps? Old or new symptoms? Do'nt know, but the optic nerve issues were like a relaps. Red swollen eye, tears, pain behind eye, drooping eye lid. Blurred vision, and weak vision. Never had that before.

Going back to to Bulgaria day after tomorrow, hopefully have some more answers then. Restenosed or something else going on?
<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 Zeureka » Sun Jun 06, 2010 2:14 pm

BooBear wrote:Can we ask those who have had relapses post-liberation whether or not they have stopped taking their medications?

I suspect that we will need to continue the meds for some time to control inflammation until things restore to normal, but I don't know if an antibiotic with anti-inflammatory properties would be just as effective as one of the CRABS here.

Any info is very much appreciated.

A friend of mine (not on TIMS) that has been to Poland for angioplasty in March stopped Tysabri a few weeks after procedure since had taken it for 3 years and had strong side effects with Tysabri - and then got a relapse 1.5 months after angioplasty.

Immediately after the procedure my friend had been told by the vascular surgeon that the stent would have been necessary (but since had refused the stent in the protocol signed before they had to respect it...even if my friend regrets coming up then, but decision had been taken and was too late...)

My friend had some improvements at first (better eye sight and less fatigue/brain fog) but then it all came back together with a relapse. Restenosis was confirmed via doppler this week and my friend will now go back for another procedure end of month, most likely with stent, as had been advised during the procedure... Lets hope it will help! But stopping Tysabri also certainly plays a combining role in this awful relapse and sad situation of circumstances (we all know Tysabri is the last med that is prescribed if nothing else helps and that the med, in particular taken longer than 3 years is certainly not without safety concerns + side effects in some people)

The relapse is recent so lets hope in a case like the one Zamboni already faced with some patients: who reported repeated angioplasty in moment of their relapse had some impact on reducing/and even heard testimonials that reported eliminating the relapse!

For me this was somehow a lesson on hesitating for stents if advised. As I then decided for my own procedure I would trust what the vascular specialists decide, as they are best placed and experienced to decide if necessary and if position regarded safe/possible. In my case they then said stent not necessary and/or even not possible, so be it. Also, I continue to take my interferone, as until now had no side effects.

But people on Tysabri are in a much more difficult situation and if they need to stop Tysabri due to side effects and safety concerns long term - to go for CCSVI treatment now is then really no longer an option (as it was for me and I still decided to take my chance!) but the only hope for them to have a chance to improve...

(I revised my comment to clarify that fist description is case of a friend of mine and not my case as might have been understood before)
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Postby Dramis » Sat Jul 17, 2010 3:57 pm

For myself i've been liberated on 8th of july they hard a hard time finding one vein... (or have they find it)now i'm sittin home returned from Poland on the 12th of july with no improvement at all. anyone seen a restenosis in a week !! I feel like crap with 13.000 less in bank account.
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Postby Zeureka » Sun Jul 18, 2010 2:01 am

Dramis wrote:For myself i've been liberated on 8th of july they hard a hard time finding one vein... (or have they find it)now i'm sittin home returned from Poland on the 12th of july with no improvement at all. anyone seen a restenosis in a week !! I feel like crap with 13.000 less in bank account.
Very sorry for that...in the information card they give in Poland after procedure (at least in Katowice) usually the diagnosis mentions in which vein they found stenosis and how it was treated - also I was informed by the vascular surgeon on what they did and received a CD where the procedure is taped and the ballooning of the jugular stenosis clearly visible. What happened there, not same for you?

I'm really sorry for you that you are disappointed post-procedure and also uncertain on what happened (that's certainly the worst if one does not understand the reasons) and then sits back home without local advice.

As for potential restenosis this can in principle happen at any time, also already after 1 week, some months, or never, it depends on the case and is maybe the biggest problem to resolve for CCSVI if stent not possible...But it does not necessarily mean that if you feel no immediate improvements restenosis has occured. As for improvements, these could still come more suttle later with time (many docs say to give it 3-8 months at least) and/or a slow-down of further progression. Keep up - I would really wish you so!!
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what you say?

Postby annbbe » Tue May 31, 2011 11:22 am

Hi, i am after one liberation, still no restenosis (and i did the procedure more than a year ago!), but...i got a relapse, and from yesterday till friday i am on steroids...
And? What you say?
Polish, 30yrs, dx 2000 RRMS, EDSS 5.

liberated in february the 2nd 2010:). Currently on double blind clinical trial with Avonex/Daclizumab.
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Postby 1eye » Tue May 31, 2011 10:07 pm

Hello,

I am being as honest as I can about this. I know there are problems that have to do with blood flow and can cause relapse of symptoms. I have not had this, even though I should have, given that I have a thrombosis in one jugular.

I am diagnosed as "SPMS" (which I don't believe in), so if I had had no intervention, or if it had not had any effect, I could not expect relapses anyway. That, to me, is a big discrepancy: all these people like me who have had no expectation of either remission or relapse, having *both* after the procedure.

But I cannot say I have had no progression. The truth is, I don't know. I believe I am somewhat better, and one of these days I will do the MSFC again and check myself. I was full time in a wheelchair. I am now full time in a walker. Doing pretty well until I seize up, on the piano, and even messing with my daughter's electric guitar until I seize up on that.

I have continued to have spasticity and heat problems. I went out today on my recumbent trike for 9K or so in about 30 degree heat. I had a do-rag soaked in water and a water-filled neckerchief on and that seemed to be enough even though I did have a hot bike helmet on top.

My left leg continues to be paralyzed and one of my calf muscles is severely atrophic. I can't dorsiflect that foot.

Diet and exercise help, but I am far from cured.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby NHE » Wed Jun 01, 2011 2:53 am

L wrote:
sou wrote:Not even in 240000000000000000000000 hours, actually...


I think that's a little pessimistic perhaps. That's quite a long time. I should hope that medicine has moved on by then.


Indeed! It's 273 million years. It would be nice to think that people will still be around then, but who knows.


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Postby sou » Wed Jun 01, 2011 5:21 am

People may be around, but certainly no MSer of today will.
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Re: what you say?

Postby Zeureka » Fri Jun 03, 2011 10:10 am

annbbe wrote:Hi, i am after one liberation, still no restenosis (and i did the procedure more than a year ago!), but...i got a relapse, and from yesterday till friday i am on steroids...
And? What you say?
Hi ann, I'd say CCSVI plays overall a big part of a preventative role but there are unfortunately still other factors... I'm very sorry for you, hope you get better soon!
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