This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

Anyone out there Liberated from a faulty valve issue only, no stenosis? If so, what were your symptoms prior to Liberation and how are things now?

Thanks!

hmm??

not me

It's a good question, maybe a search of the tracking thread might yield some answers?

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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

Thanks Cece.. I've checked the tracking thread.. not seeing anything.. going to bump this now and again.. personal quest.. and question..

Hi PCakes,
I had problems with my valves in the left jugularis. I am almost 7 months after the procedure in Katowice.
I have some improvements but I am still dizzy, my vision is as bad as before the treatment and I still have problems with heat - I see even worse for a while and together with some activity it brings my fatigue. I just have to be careful how much activity I do each day and I have to be careful with sun.
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

Thank you so much Erika.. i enjoy reading your posts....do you know what your valve problem was? are you enjoying other improvements? are you happy that you had it done?

wishes for a good day..pCakes

I do not know exactly what was the problem with my valve. Dr. Simka wrote "pathological valve". I had reflux as well. There was no flow.
When I had my first and so far the last follow up, Dr. Simka said the flow is still not as strong as in my right jugular but it is much better than before with zero flow.

I have less headache, I can walk faster, I do not have to push my bladder to be able to empty it, my movements are faster, I do not take sleeping pills after 16 years, I take less Carbamazepin for my nerve pain, I did not have any attack, I do not feel worse, I take only LDN, no injections no Tysabri, so yes I enjoy more improvements.

OF COURSE I am happy I had the procedure!!!
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

Erika, Thank you again.. thank you for sharing...I celebrate with you !!!!
I am the youngest of three sisters.. the only, so far to be scanned and diagnosed with CCSVI, faulty valve issue suspect. We all share the same symptoms with severity directly related to age. There are 2 generations behind us.. the smile of a 3 year old angel drives my familial, community and personal mission.
Things my neuro told me #6 "..this is not genetic."

I had no significant stenosis in any of the veins, but in the lower portion of the pathologic valve on the left side, I experienced significant decrease in flow.
I had a increase in flow on the right side when supine and the collateral circulation via the thyroid gland and anteior veins of the neck was noted especially on the right side.
Dr. Kostecki and team investigated the right side via the venogram and did nothing, and ballooned me 4 X on the left side - and ended up placing a stent.
Since then I have:
-warm hands and feet
-less tingling in hands and seemingly increased strength and flexibility
-less "brain fog"
-bladder control
-able to swallow better
-l'hermittes is gone
-less interupted sleep
-better balance
-less fatigue

Has only been 2 weeks and I won't really evaluate until a month has passed. Would do it again in a heatbeat.

StentorKate..thank you!! (i like your name)

grammastang - (Lynda) actually gave me the name - we were in Poland along with Alanbrowne and 3 others. After we got back she sent an email to the other "stentors" so I decided it was a good nickname.

Kate