How have i dealt with stent thrombosis followin my CCSVI

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

How have i dealt with stent thrombosis followin my CCSVI

Postby Ewalala » Wed Oct 27, 2010 12:58 pm

As You all know in December 2009 I had an angioplasty of juglar veins followed by a stent implantation in left jugular vein.
For about 6 months after the procedure I have experienced a significant improvement across multiple of neurological symptoms, (I wrote about it earlier on this forum) but in June my condition deteriorated .
The ultrasound examination of my jugular veins has showed a stent thrombosis.
I came to Poland again in the begining of September . This time to a clinic in Warsaw ameds.pl.
Obviously I had no intention of returning to Katowice.
Due to stent thrombosis , I have undergone Enoxaparin treatment for 3 weeks .
I was in agony while waiting for the treatment. The doctors in Ameds clinic not only discovered stent thrombosis but the right vein which had been previously opened via a ballooning procedure also had collapsed.
Ameds uses Zamboni Doppler machine, on Dr. Zamboni scale my CCSVI condition was at 4 out of 5. Needless to say my MS symptoms were all back, some of them like pain running through the roof.
First time in my life I had an appointment with a pain management doctor.
Also everything else with my body was becoming beyond any control. Walking, numbness, pins and needles, burns,. Vision problems just to mention a few. Well as well as constipation problems, but at least these ones I don’t mention that part easily 
On 22.Sep.2010 , again I had luckly undergo Venography of internal jugular veins and the azygos vein.
Venography revealed stenosis of internal right jugular vein, and an in stent thrombosis of left jugular vein.
Dr. Maciej Zarembinski from Ameds Centrum performed a PTA of both internal jugular vein.
And again as if a déjà vu, all my problems disappeared.
Well, truth to be told: some of the pain is still there.
But i am liberated again, and since the treatment it has been more then a month now, i am getting better and better.

I Feel in One piece again and what is more important: i feel much safer.

My doctor has been concerned about the risk of recurrent thrombosis in the previously implanted stent.
Hence I am now taking Plavics in addition to blood thining asprin.

I would be very happy to answer any questions that You might have, so please do not hesitate to contact me.
tillmann.e@gmail.com

Sincerely,
Your fellow fighter against MS.
Eva Tillmann

Testimonal from ameds patients you can find here.
<shortened url>
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Postby Cece » Wed Oct 27, 2010 3:23 pm

Thanks, Eva, for sharing this. It's good to know these situations can turn out well. Wishing you the best.
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Postby prairiegirl » Wed Oct 27, 2010 3:45 pm

Thanks for posting, Eva-- wish you continued improvements!
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Postby David1949 » Wed Oct 27, 2010 4:15 pm

Thank you for that information. I'm glad you're feeling better and hope your recovery will continue. To my way of thinking your case and others like it provide further proof that CCSVI is real and that it is related to MS.
In the beginning you had MS and CCSVI. When you were first liberated your ms symptoms got better. When your blockages returned your MS problems came back. When you had the blockages cleared again your MS symptoms got better again. Its almost like flipping a switch.

Let's hope the switch stays in the MS-off position.
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stents

Postby blossom » Wed Oct 27, 2010 5:15 pm

the very best healing thoughts sent your way!!
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Postby Sotiris » Thu Oct 28, 2010 7:47 am

Ewalala wrote:As You all know in December 2009 I had an angioplasty of juglar veins followed by a stent implantation in left jugular vein.
[...]
According to your first post http://www.thisisms.com/ftopicp-87213-.html#87213 you were liberated on January 5th, 2010. All your posts seem to advertise treatment in ameds...
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Postby ClaireParry » Thu Oct 28, 2010 1:49 pm

[...][/quote]According to your first post http://www.thisisms.com/ftopicp-87213-.html#87213 you were liberated on January 5th, 2010. All your posts seem to advertise treatment in ameds...[/quote]

I do wonder????

Why would you not go back to Euromedic? Do you think they were incompetent in some way?
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Postby cheerleader » Thu Oct 28, 2010 1:55 pm

Hi Eva---
Jeff and I wondered how you were doing, and are so sorry to hear about the thrombosis. We're glad to know it was taken care of and you are on the mend. Jeff's also on plavix and baby aspirin as well as the endothelial health program---probably for life, since his coagulation numbers are higher than normal and his veins tend to close back up.

Just so readers know, Eva is Polish born, living in the US, the wife of a musical colleague of ours, and she went to Ameds after she was treated in Katowice and brought word of CCSVI treatment to that facility. So, thanks to Eva for spreading news of CCSVI in her home country.

give us a call sometime!
best,
cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby xia » Fri Oct 29, 2010 3:46 am

Hi,
I hope you are doing well. I too have the same problem at the moment. My last scan in July showed in stent thombosis and I have been put on Warfarin. I contacted Dr Simka to let him know what my vascular consultant said and he replied saying that it might not be a clot but something called intimal hyperplasia. This is the stent irritating the vein lining. He said he has seen alot of it.
I am due to go for another scan next week to find out for sure what it is as my consultant is not ruling it out.
I hope you continue to do well.
Kind regards
xia
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Re: How have i dealt with stent thrombosis followin my CCSVI

Postby Interrupted » Sat Oct 30, 2010 10:22 am

Ewalala wrote:For about 6 months after the procedure I have experienced a significant improvement across multiple of neurological symptoms, (I wrote about it earlier on this forum) but in June my condition deteriorated ....
Obviously I had no intention of returning to Katowice.


I have to echo Claire's question, what exactly did they do wrong in Katowice to elicit your aversion? Restenosing isn't something that can always be controlled or avoided, and 6 months without restenosing is a pretty good-average result for a first procedure. Do you think Euromedic were guilty for your stent thrombosis in some way?

I'm confused by the sentiment in this and feel there must be something missing from the text :?: Thanks x
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby Puma » Sat Oct 30, 2010 10:41 am

Hi

It is so right what Rici writes. Be careful.

greetings Puma














:lol:
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