Relaps 3 weeks after ccsvi operation, and NO restenosis

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

Relaps 3 weeks after ccsvi operation, and NO restenosis

Postby sofia » Wed Jun 09, 2010 6:25 am

I had procedure May 12th
Had loads of significant improvments.
Had relaps, new optic nerve issues and flair up of old vertigo symptoms.
Went back to Bulgaria. New scan, wide open jugulars and azy good as far as they could tell. Did not have venogram, but scan was ok.

Rest is doctors orders, so will do :-)
<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 BooBear » Wed Jun 09, 2010 6:28 am

I hope you get better soon!!! Keep us posted.
Three veins angioplastied.  One renewed life.  
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Postby LR1234 » Wed Jun 09, 2010 6:48 am

My doppler scan looked ok as well after my vertigo relapse.
I am trying to sort out a venogram just to make sure as my inital blockages did not show up on the doppler either.

Wish you better soon x
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Postby costumenastional » Wed Jun 09, 2010 7:33 am

Sofia, hang in there friend. I really dont think that whatever damage MS has done to us will vanish overnight. I was watching Tornatore's (?) interview a while ago and i think that his approach is the most logical. He is like, "well we dont know anything about this, but my guess is that if this works out it ll have to do something with the long term outcome".

For me, not feeling great one month after i opened my veins seems natural (even though i hate it) when i come to think that my first symptom goes back at least 6 years ago.

From what i ve read in your post, i can only say that having proper flow is great news. Chill out if possible and keep us in the loop please.

Remember that some of Zamboni's patients relapses resolved upon liberation (on the operating table) without the need of using cortisteroids but i dont think that this goes for everyone. Have in mind that in order to push for further research Zamboni's familiars may use some "highlight" moments too. Can you blame them? No, just think it out and relax.

Are you currently on MS meds?
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Postby Lyon » Wed Jun 09, 2010 12:22 pm

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Postby esta » Wed Jun 09, 2010 1:42 pm

hi sofia
i had the procedure in katowice poand may 6th. same thing, all the great benefits are gone, i'm assuming i've restenosed, but after reading a few stories, and remembering we need to give it 3-6 months, i wonder...good luck my dear, its got to be the hardest 'patience' lesson ever!!!!!!!!!!!
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Postby sofia » Thu Jun 10, 2010 9:45 am

Hello and thank you guys.

I am still happy I had the procedure done, as some of the benefits has persisted. And all in all I feel better then before procedure, but it was defenetly a relaps.

Of course we have to be honest about it, Lyon. It is no point in ignoring facts if looking for the truth. I am quite confident that all us patients are honest about the results after liberation, both the good, the bad and the no difference. So that is the main reason to keep having it done.

I used to get Tysabri, some of the people on it were so happy about it, it did wonders for them. It did nothing for me, apart from making me worse, as it does to some of us. The neuros had no explanation to why it does't work with everybody, it just something we have to accept.

Same with liberation. It does work for quite a few, same with LDN, it does work for some. Why not look at it as a multifactoral disease with multipple solutions as well. If venes are blocked have them fixed, if endorphine levels are down, get them back up with LDN, if the immune system is going mental, take imuno supressants.
The combined result might be good :-)

For somebody it might be sufficient to have liberation done, for some it might suffice with LDN and for others it might be enough with interferons. Why shouldn't these different treatments work together.

It might not be in our best interest if everything has to be proven to impossible levels. Not if we are dependent on more then one fix. If something is broken, FIX it.
<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 Nasti » Thu Jun 10, 2010 11:41 am

Hi
I have the same story. I had the procedure with Grozdinski on 3rd June, I was in a relapse at the time, the procedure did nothing, now I had a bit of work and I am having new symptoms. I had no taste in the right side of my mouth and poor balance, i.e. weakness on the right, now the no taste feeling is still here, and the poor balance shifted to the left. I kind of feel very bad, I had my hopes up about this, but nothing... I feel awful now physically because of the anticoagulants, I have to take them for 6 mos because I have 6 cm stent in my neck, I simultaneously take the ldn, but I still feel very bad, I lot of head and shoulder pain because of the stent...
I really had my hopes up pretty high, I even think that I was better off when there was no sign of CCSVI, I was with peace with the fact that there is no cure, now this thing, with no improvements, completely messed me up.
I have had MS for 10 years, I only have relapses, no remaining symptoms, but this is the first time in my life that I feel really really ill...
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Postby Asher » Thu Jun 10, 2010 12:21 pm

Nasti, I feel I want to say something to you, but just don't know what. Don't know you, but my heart's with you.
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Postby LR1234 » Thu Jun 10, 2010 12:47 pm

Nasti, we are all in this together...
I think only time will tell for all of us whether the trend post procedure is positive or negative. I have a feeling though that CCSVI and blood flow is the key to ridding ourselves of MS. I think it will just take time for the dr's to get the whole answer.

Hang in there.
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Postby Lyon » Thu Jun 10, 2010 1:05 pm

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Postby Acheron » Thu Jun 10, 2010 2:36 pm

Sofia, it is possible that you have CTOS, another problem that presents itself along with CCSVI in many patients.
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Postby shye » Thu Jun 10, 2010 3:16 pm

Sending lots of light to you Nasti--
and to you also sofia, esta and costumenastional---
I cannot imagine tht I would react with such peace, hope and conviction if in the same spot--
I deeply admire you all.
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Postby BELOU » Thu Jun 10, 2010 10:06 pm

If iron is stored in the brain via poor blood flow during a mean time of 30 years (majority), I don't expect proper blood flow to be able to get rid of this within 2 months. Inflammation, is part of the reaction that preceeds healing. Let say that people having relapses and no restenosis have their brain trying to heal and clean some iron saturated areas. Actually, I think that having a relapse after being liberated doesn't mean that it's not working at all and that CCSVI is not the root cause. I also would like to point out that so far nobody has proven that CCSVI is really the cause as well. It might be or might not be the root cause but that's funny... I have MS and have a blood reflux in my left jugular...

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Postby Nasti » Fri Jun 11, 2010 5:22 am

I am sorry for the depressing mail I sent yesterday, I felt pretty bad and had to tell people who would understand me, thnx to all of you...
I am thinking now, since I did everything available, the only thing is to wait and see and hope for the best. huh?
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