Post if CCSVI treatment did NOT work for you

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

Postby Chris1967 » Mon Jul 12, 2010 6:48 pm

rssugg wrote:
There is more to this story than a simple balloon.


Like a stent.

IF they would start doing procedures instead of just arguing we could all find out sooner than later. Its obvious while this turf war continues so does our progression.


What does this mean?


Yes, thats it! We'll be sarcastic, that helps.
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Postby Chris1967 » Mon Jul 12, 2010 6:52 pm

I had the procedure done in Bulgaria on May 5th, some ten weeks later I have not experienced any improvements. To the contrary, my disability was 6.0, I would guess I am atleast a half point more progressed.

Cant type any more, sorry for the bad news
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what happened?

Postby Rosegirl » Tue Jul 13, 2010 3:40 am

If you find little or no improvement after your procedure and you choose to post here, could you please post a little more information?

I honestly believe that, at least for some folks, as better techniques, equipment and better trained doctors become available, some will find the relief they seek.

How long has it been since your procedure?

Did the doctors find any problems, and if so, where?

Were they able to do anything about the problem or was the vein so damages that there was no way to fix it?

Did you see improvements but then they disappeared?

Thank you for contributing to our knowledge base. I hope you will have better things to report in the future.
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Postby SkallyWags » Tue Jul 13, 2010 4:30 am

Thank you for this thread.

My husband and I are off to Bulgaria in September for CCSVI testing and hopefully treatment. My husband has primary progressive ms and we are trying very hard to keep our feet on the ground and not expect miracles. This thread helps. It also helps to read that those who have experienced little or no improvement still do not regret going - just alittle concerned that Chris has got worse. I hope you feel better soon Chris - nothing to do with CCSVI, just not wanting MS to get worse. I guess the stress and the travelling can do this.

I sincerely hope I won't be posting his progress on this sticky! But if it comes to it, at least we wont be alone. xx.

p.s. there are recommendations for what to do post angioplasty to reduce the chance of stenosis - the guidelines are for heart patients, but that is all we have until CCSVI becomes more established.
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Azygous Veins, Poland and Venograms

Postby SkallyWags » Tue Jul 13, 2010 4:44 am

I forgot to mention this...

I sent a UK doctor the protocol that Dr Simka uses in Poland. This doctor responded and said that Dr Simka is focusing on the jugular veins, which makes sense at these are easier to treat. I see this as a possibility that Dr Simka's method could possibly be missing the azygous.

If you have a copy of your venogram, it is worth trying to get a second opinion from a vascular surgeon as to whether anything was missed.
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Postby joanp » Wed Jul 14, 2010 6:07 am

http://www.thisisms.com/ftopict-12754.html

thought i would post this link here as this person had a thrombosis in jugular.[/url]
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reluctant to post here

Postby LivabirdsHubbie » Thu Jul 15, 2010 4:32 am

Hi All,
I am a little reluctant to post here but as my wife has had the treatment in Poland and all benefits have now gone, figured we should share this.
Liva has PPMS and has had it for over 30 years.
After the procedure on April 22nd Liva experienced some great benefits..
The usual warm pink feet and hands, 2 fingers on her left hand were working perfectly fine, no pain, better eyesight....
After about 1 month these started to deteriorate again. At this point in time she is actually worse than before the treatment, a little concerning.
She had 1 stent put in the Right jugular(100% blocked) and power ballooning in the left (about 75% blocked). First impression from Dr Simka is the her azygos did not look great, in fact he found 2 of them.
So we don't know why things have got so much worse, only thing we can think of is that the left has restenosed and or the azygos should have been treated. Euromedic has said they looked fine, but we are not convinced.
We have now booked to go to Bulgaria (Oct 8th) where we know the azygos will be treated. So heres hoping we don't need to post here again, although I will put a post here to give an update post Bulgaria

Keeping our fingers crossed...
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Postby judipom » Thu Jul 15, 2010 6:12 pm

Hello--I had the procedure done at Georgetown University 8 days ago. I had a considerable stenosis of the right IJV which was opened with balloon venoplasty. My left IJV and azygous were fine. To date I have not seen improvement in my MS symptoms.

My circulation seems better which I judge from the warmth I feel in my hands and feet in the morning. Other than that nada.

Judi
RRMS Diagnosed 1997
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Postby Richardk » Thu Jul 15, 2010 7:39 pm

Hello all


I had the procedure done in Katowice, February this year....was diagnosed by Dr Simka with blockage in the azygous and right jugular veins....Given I am SSPS, I was not expecting miracles and was not surprised by the results....there were small noticeable changes, ie could lie down on my back without the nasty twitches and pain in my legs starting up, this improvement has lasted....my swollen feet initially returned to a more normal state, this however has not lasted....these were the only improvements noted....would I do it again?...very definitely, and I hope that the studies now taking place in North America shed some more light on the CCSVI connection w/ MS so that we can all benefit.
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Postby Zeureka » Thu Jul 15, 2010 11:33 pm

judipom wrote:Hello--I had the procedure done at Georgetown University 8 days ago. I had a considerable stenosis of the right IJV which was opened with balloon venoplasty. My left IJV and azygous were fine. To date I have not seen improvement in my MS symptoms.

My circulation seems better which I judge from the warmth I feel in my hands and feet in the morning. Other than that nada.

Judi
Hi Judi, in case you had brain fog/fatigue spells before, in my case of jugular balloon venoplasty I only felt a more long-term effect after 4-6 weeks on that. At 8 days also did not feel much better, had a down with headaches. And first month they still came back stimes, but then suddenly better. To see if impact remains for coming months/years.

In addition would like to add a general comment: this thread is really important to understand and learn from potential complications (and really sorry, hope can be resolved). But, besides improvements/no improvements after procedure think important not to forget the potential impact on the prevention of MS progression. This can in principle only be monitored over years...so lets monitor! And in the meantime noone should be hindered if decides for himself to have the procedure of opening closed veins, to do so. Closed veins are a fact - that people with MS have vein abnormalities in their body is a fact too. As regards proof of effects (whether preventative or immediate, as would seem rather related to more recent symptoms, or with time maybe on long-term some recovery - noone knows this yet!) it's a personal decision if one decides to wait for more research or not. I understand both point of views.

If noone would have done it though, there would have been nothing to monitor...and to discover...and no chance to improve... If you ask me now, would certainly do it again. Lets see what say in 1 year.
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Postby judipom » Fri Jul 16, 2010 7:42 am

Zuereka: Just posting my results. Didn't need a lecture.

Judi
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My house burned down, now I can see the moon.
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Postby Lyon » Fri Jul 16, 2010 8:14 am

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Last edited by Lyon on Sun Nov 20, 2011 6:54 pm, edited 1 time in total.
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Postby Zeureka » Fri Jul 16, 2010 8:49 am

judipom wrote:Zuereka: Just posting my results. Didn't need a lecture.

Judi
Ok, sorry if came across like that also just posting my thoughts :wink:

Wish you all the best
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Postby patientx » Fri Jul 16, 2010 9:28 am

judipom wrote:Hello--I had the procedure done at Georgetown University 8 days ago. I had a considerable stenosis of the right IJV which was opened with balloon venoplasty. My left IJV and azygous were fine. To date I have not seen improvement in my MS symptoms.

My circulation seems better which I judge from the warmth I feel in my hands and feet in the morning. Other than that nada.

Judi

Thanks for posting, Judi. Like Lyon, I hope that you do start seeing improvements.

One question, if you don't mind. In your entry in the tracking thread, it mentioned they found reflux in both jugulars using the Doppler ultrasound. But they only found a problem in the right IJV. Did the doctors mention anything on this?
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Postby judipom » Fri Jul 16, 2010 10:00 am

Zeureka wrote: Ok, sorry if came across like that also just posting my thoughts :wink:

Wish you all the best


Zeureka: Thanks, I really appreciate that. I busted my hiney this past fall trying to get a research hospital interested in CCSVI--and was able, with some excellent connections, to instigate things at Georgetown in Washington DC. I have no regrets about the efforts I put out and don't regret having the procedure at all. My symptoms have not changed and I am, as anyone would be, disappointed about that. Thanks for your good wishes.

Judi
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My house burned down, now I can see the moon.
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