Post if CCSVI treatment did NOT work for you

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

Postby joanp » Wed Sep 15, 2010 7:01 pm

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Postby joanp » Wed Sep 15, 2010 7:08 pm

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Postby Cece » Wed Sep 15, 2010 7:39 pm

joanp wrote:http://www.enjoyingtheride.com/

thanks for posting this, but dang! This is not the thread I want people to turn up in, especially if we haven't heard in awhile. :(
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Postby MamaGirl » Thu Sep 16, 2010 10:17 am

joanp wrote:http://www.enjoyingtheride.com/
You are an absolutely amazing person; courageous and honest!!! There was love and compassion and such truthfulness in your writings. Thank you for being the minority, the one who fits into the very small percentage of keeping it real, good or bad. This is what it should be about; caring for those who may or may not believe but continue to search. Those who are searching for answers should be able to find BOTH sides of the spectrum without being demeaned or ridiculed. I have never felt welcome until I read your post... thank you from the bottom of my heart for your honesty. I pray for your well being and hope the future has nothing but the best for you. I search everyday for a cure for MS, even a treatment will do but I search for my family that they may one day escape the painful lives we with ms had to endure but I search for truth and it is certainly hopeful and helpful to hear ALL the truths, not just those who thank GOD were successful as we ALL with MS have that right! Thank you and may GOD watch over you always and keep you strong and well, Kimmy <3
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Postby jbro » Fri Sep 17, 2010 7:21 am

Cece, "Enjoying the Ride" is very well-written, full of heart and truth. I enjoy writing too, but it wears me out. How do you manage that? Great Flannery O'Connor quote too. You have to know reality to deal with it.
Take care, John
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Postby Renoandi » Sat Sep 18, 2010 1:27 pm

Hi eveyone,

I don't know if I am being premature on posting here or not. I had my procedure on the 14th, so this is only day 4. I have not seen any improvements at all with any of my symptoms.

I am hoping that over time I will see some benefits. For those of you who haven't, what are your symptoms and where are your lesions?

Most of my lesions and relapses are do to the spinal cord. I have a severe 24/7 hug that wraps around my entire upper torso as well as a constant pulling and tighened feeling on my neck.

I also have a limp on my right side, fatigue, numbness over many parts of my body, cognitive problems and heat and cold intolerance.

I know that once damage is done in most cases it can't be undone. This is why I worry so much about my spine and the constant attack on it.

I do have lesions in my brain as well, just found out I have 3 news ones. I was hoping to at least to see a improvement from my fatiuge and cog fog, but nada.

So that's my story for now and will update as I go along. I do have a follow up in October and I want another doppler to see if there is still reflux and if I should have the procedure again.

Take care,
Andrea
www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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Postby pklittle » Sat Sep 25, 2010 9:29 pm

pklittle wrote:My initial venogram and angioplasty on 3 areas was done in Albany, no benefits realized.

*UPDATE*
8/27/2010

Consulted and tested by a LOCAL FSIR (yeah!) on 8/24/2010. He did a thorough job using venogram to check my lower veins for MT and also the IJR, vena cava, illiac (don't know all the names). They entered from both sides. All was flowing great except for my left IJR which is a whole mess of collateral veins that he couldn't get the catheter by to check any further up or do angio. They provided me with a DVD of the entire test and written report as well.
The sad part is, nothing can be done. I guess I'm done. CCSVI got me.


*UPDATE*
9/25/2010

I have learned that my second venogram report is INCORRECT. The doctor was in the WRONG VEIN... thought he was in the left IJV when in fact he was in a smaller vein next to it. Sooooo, my left jug is not as messed up as I have been thinking it was for about a month.
Someone stop this merry-go-round. I wanna get off.
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Postby KDGO » Sun Sep 26, 2010 9:48 am

So PKlittle you reported nothing could be done but now your correct vein is found...can you get angio now? Is it affected?
This is hopefully good news of this finding.
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ccsvi dissappointment

Postby crocky » Tue Sep 28, 2010 10:55 am

Hi,
Well I had my first treatment on April 8 2010, after no immediate improvements apart from the warm feet bit, things did slowly improve, balance etc.
I was treated in Katowice Poland by the Simka team and have spms, and had a stent placed in my left jugular.
Anyway, after the first couple of months, things went back to pre-treatment state, of course, I was very disappointed and thought about re-stenosis.
I went back for a check up in early Sept - said my right Jugular was showing signs of uneven flow,so had that angioed.
My stent has some kind of skin / material growing inside it. Not a good sign for the future! Right now flow there is normal.
Cen honestly say that have had absolutely no improvements since my second treatment. I am very disappointed.
My main symptoms are very severe fatigue and balance issues - I can walk ok, just totally wipes me out to do more than 100 metres.
Although I know, and have seen that ccsvi has done wonders for many msers, sadly it has not worked for me.
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Postby KDGO » Tue Sep 28, 2010 11:16 am

crocky
Thank you for posting. Did you also have your azygos looked at?
Do you know the details of the brand of your left stent that has something growing on it? Does Dr Simka find this unusual?
Is all else ok with your jugulars? Just wondering if something was missed.
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Re: ccsvi dissappointment

Postby Cece » Tue Sep 28, 2010 11:27 am

Crocky, I am sorry that it turned out this way. The skin in the stent is called intimal hyperplasia, it's because the vein wall grows to incorporate the stent but if it overgrows it needs ballooning.
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Postby KDGO » Tue Sep 28, 2010 11:54 am

Cece
Does this happen with any particular kind of stent or the type of stent has no bearing on this?
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Postby Cece » Tue Sep 28, 2010 1:31 pm

KDGO wrote:Cece
Does this happen with any particular kind of stent or the type of stent has no bearing on this?

Past my depth now. :)

(I think everyone with CCSVI is getting bare metal stents. Drug-eluding stents would reduce the amount of regrowth over them. But there must be a reason why they're not being used: perhaps greater risk of something else, such as migration?)

As long as I'm here, I want to give a shout-out to everyone who has contributed on this thread and pklittle for starting it. Very often over on the Facebook CCSVI page, if someone asks about the less optimal outcomes, they are referred over here.
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Postby pklittle » Tue Sep 28, 2010 3:30 pm

Thanks cece. I am so glad it has survived. Just keeping it real.
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Postby pklittle » Tue Sep 28, 2010 3:44 pm

KDGO wrote:So PKlittle you reported nothing could be done but now your correct vein is found...can you get angio now? Is it affected?
This is hopefully good news of this finding.


This is confusing, I'm sorry. In my attempt to be brief/not too wordy, I sometimes am not clear.

Procedure 1 - Albany- Left IJV ballooned in two place (right one in one place). No benefits.

Procedure 2 - Local IR - when attempting to check left IJV, he was in the wrong vein. No ballooning done.
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