This Is MS Multiple Sclerosis Community: Knowledge & Support

I think cheerleader's husband had headache after the procedure, that eventually resolved...?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I had headache after the procedure as well.
It was OK after couple of days. I just was taking usuall headache-pills as I was having headache more often. My headache is muche better since the month 4 after the procedure.
Dr. Simka told me that more people were reporting headache I think those were patients of Dr. Dake and Dr. Zamboni as I was only #2 in Poland.
One patient who had the procedure in Slovakia and was in contact with me was reporting strong headache as well. I think it is simply: "part of the game".
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Is headache a common side effect from the ccsvi procedure, is there anything else someone should maybe expect. I'm schedule for June 15th 2010. I was excited, now I'm getting a little nervous and scared. What about the follow treatment, they are suggesting 3,6, and 12 month ultrasound. any suggestion

hi rethink
i was liberated may 6th in katowice poland. i have since restenosed, and have no hesitation about going back and this time get a stent. the results are dramatic, and i have PPMS (35 years), and in a wheelchair! the EUROMEDIC team is fantastic, and of course that includes the drs...
it was the best outcome and experience, i can't wait to regain my improvements again and get on with my life...oh yeah, besides no headaches, there was no pain. if i get headaches, big deal, i'll take a pill.

I have just returned from Bulgaria liberated, so far so good a week on!

Dr Grozdinskis, and Dr Petrov's team there had some interesting comments to make about angioplasty, stenting and restenosis.

I was told that the requirement for a stent deponds only on the type of stenosis and not the length of time you require the liberation to last.

I was told that if ballooning is sufficient for a certain type of stenosis and if applied appropriatley re-stenosis should not occour. In his opinion the requirement for a stent is therefore not relevant to potential for restenosis.

They qualified this statement by also saying the rcorrect aftercare drugs are essential. I am on Pradaxa, Deflon and Aspirin.

Justliberated

Hello everyone, my name is Diego and I am an Italian boy, first of all excuse my English very low (translate by google)
I am sick and 38 years since 1992 in Italy do not talk about other than the CCSVI and absurd, Dr. Zamboni is Italian, but we have things go very slowly, are now making diagnoses, But from diagnosis to intervention through real step many years (just cook for us at the right).

I read a lot about your experiences of your "liberation" and fascinated the rest, hope of new life is great, do not say cure, but new life, I just take my children in their arms and take a few steps without having to stick to everything, would be great, I did last week, a second protocol ECOCOLORDOPLER Zamboni, Dr. did not notice anything strange, but honestly I am not convinced, probably the doctor who has followed the examination is not yet very experienced, as she admitted to another. I remain hopeful, hope does not cost anything. Now I greet you, excuse my English and good day to all.

DIEGO

Hi Diego,

I understand your frustration. I think there are many facets to CCSVI. While MS patients do not have the luxury of time on their side, we can only canvass for support and understanding of our plight.

Please do not give up hope.

Kind Regards

excuse Opera, I read my previous message (translated) and I'm afraid you do not understand much! Let me know if you understand the meaning of what I wrote. Hello and a hug

DIEGO

I was liberated on last wk of Feb, my right IJV was stented (60 * 10mm) just below the ear, for last two I'm having weakness, stiffness in right hand from shoulder to palm.. Not sure what is causing this ?? is this be MS or due to stent, Anyone have any idea, pls advise.. (One of my MS friend mentioned that it could be... due to acc nerve getting affected by size and location of stent). What could be option I have..

There have been a couple of other people that have had accessory nerve problems. You might try contacting Mrhodes and Loobie by PM and also read through their posts to the forum.

NHE

I was liberated on last wk of Feb, my right IJV was stented (60 * 10mm) just below the ear, for last two I'm having weakness, stiffness in right hand from shoulder to palm.. Not sure what is causing this ?? is this be MS or due to stent, Anyone have any idea, pls advise.. (One of my MS friend mentioned that it could be... due to acc nerve getting affected by size and location of stent). What could be option I have..

PLEASE, PLEASE....before being treated, discuss these complications with your doctor and have a retreatment plan in place BEFORE you get angioplasty.

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

It istrue that stents inveinsis less developed than stents in arteries. However the importance of venous disease is becoming better understood. Similar conditions likevenous sinus stenosis in the brain causing increasedintracranial pressure havebeen used successfully in the last 10 years and at least inthe short term with minimal complications.
One questionihave about this is whether ms patients withstenosisin juguar veins have increased pressure in the veins of the brain. Is this measured? Do pts have a lp to check?
Ita certainly a very promising treatment just needs more timeand studies I guess. [/code]

Hi,

Does anyone have any information about the rate of thrombosis following the placement of stents in the jugulars? I heard that there has been many cases but I've only seen a couple of them reported here. I wonder risky it is to place stents as I have one in the LIJ and my doc thinks I need another one in the right.

best,

Spiff

My DW, SPMS since 1992, had her first angioplasty done on August 18th in Orange County, California. Immediately post-procedure, she reported overall reduction of spacticity throughout her body, and demonstrated this by elongating her legs to full extension and flattening out her knees, something she had not been able to do for quite some time. Very noticable was the return of fluidity to her speech and a dramatic reduction in her word-calling deficit. Those dramatic improvements have waned since her procedure and her knees are now bent in their former default position, making it difficult for her to make any progress in her ability to walk in physical therapy.

Other improvements that followed her procedure have remained, however. These include: (1) elimination of a headache; (2) improved sense of smell; (3) return of sensation to her feet; (3) almost complete elimination of a daily hiccuping jag and vast reduction in its duration when it does occur; (5) return of sensation to a formerly numb fingertip; and (6) elimination of cerebellar ataxia.

Her azygous vein was very blocked throughout its length, with many of the occlusions being webs. One section of the azygous was so curved that the IR was unable to baloon it becuase of the lack of availability of the proper configuration of catheter in inventory.

The angiogram images show successful widening of the IJVs, the return of normal flow there and the inactivation of flow through peripherals, but the azygous does not appear to have had any lasting change once the balloon was removed.

Now we are talking about a second procedure, not only to address the area that could not be treated the first time, but also to try once more to open up any veins that have restenosed, such as the azygous. There is much discussion in this thread about IJV stenting, but what about the azygous?

We would like to hear from anyone who has undergone stenting of their azygous vein. In addition to replying here, you may reach us at egbokmom2000@yahoo.com and/or stevenh_hirsch@yahoo.com, or at Steven Harvey Hirsch on FB.

Thank you all for your support and assistance!

Steven