The Veins in CCSVI- from Dr. Simka

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

Postby Ernst » Wed Jun 24, 2009 12:07 pm

..and the Chessplayers are: Zamboni, Dake and Simka? Probably there will be more players in this game.. in near future, I guess.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby cheerleader » Sat Jun 19, 2010 11:23 am

A very important revelation on the difference of veins of pwMS from Dr. Simka.
Please read from page one. We are seeing more evidence of this as more doctors become involved.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ThisIsMA » Sat Jun 19, 2010 1:50 pm

I would be curious about what process was used (for example how many studies were required) and how long it took for angioplasty and stenting of the vein in May-Thurner Syndrome to go from being an experimental procedure to one accepted and covered by insurance.

Were patients diagnosed with May-Thurner Syndrome initially prevented from having dianostic testing and treatment using angioplasty? At what point was it allowed? At what point was it covered by insurance?

Perhaps people pursuing discrimination complaints and lawsuits re: CCSVI would find a comparison of the process used in the development of these two procedures helpful in making their case. I'm not sure how one could research the history of the development of a medical procedure though...
DX 6-09 RRMS
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Postby sbr487 » Sat Jun 19, 2010 9:23 pm

lot of questions to be answered

- is it do with gene defect leading to incorrect development of veins. If so, why in those areas only?
- i would assume that veins do develop to a certain age and then stop. When we say develop, it is nothing but cell division. Is it that every time they divide, do they end up having more defective vein structure?

I hope at least we are on the right path this time ...
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Postby 1eye » Sat Jun 19, 2010 10:35 pm

both in the same place in the jugulars, it's neckties, i tell ya... :roll:
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby elyse_peace » Sun Jun 20, 2010 1:18 am

Cheer -
Thank you. Your giving nature and good sense of direction (finding appropriate "reading material" to educate us) leave me near speechless ... after your major concern with the subject seems (to an outsider) under control, with Jeff doing pretty well, you are still here in the trenches, helping this community learn just how weird this malady is.
My cog/fog prevents me from doing a good job of research (or anything else that requires focus). So, thank you again for sharing your strength.
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Postby cheerleader » Wed Jun 23, 2010 3:08 pm

Barb Farrell has been treated in the US. Her jugular veins were seriously stenosied, and she had angioplasty in the right, and stenting on the left side. She was also found to have May-Thurner disease. As mentioned at the beginning of this thread, Dr. Simka noted that the jugular veins of pwMS looked like May-Thurner veins. By entering on the LEFT side, Mrs. Farrell's IR found out that her venous disease is systemic.

I believe this will be the key. Systemic venous disease. May-Thurner was the first one diagnosed....CCSVI is the sister disease in the neck/chest. The veins have not been studied. We are at the brink.

Barb is SPEAKING (she had lost the ability to talk.) She is moving her feet (she had lost motion) and lifting her arms. Her husband is ecstatic.

I believe this is going to be the case that will change CCSVI research. We have correlation with a known venous disease....continued prayers to Barb Farrell and her husband and son. She was a brave soul, to travel and undergo treatment far from home. We should all be grateful to her.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby prairiegirl » Wed Jun 23, 2010 3:31 pm

I believe this is going to be the case that will change CCSVI research. We have correlation with a known venous disease....continued prayers to Barb Farrell and her husband and son. She was a brave soul, to travel and undergo treatment far from home. We should all be grateful to her.

cheer[/quote]

...and to her benefactor. This is exciting and emotional to follow this news-- may Barb see continued improvements in the days ahead!
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Postby shye » Wed Jun 23, 2010 3:35 pm

Amazing stuff-
unrolling like the best of Shakespeare--
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Postby shye » Wed Jun 23, 2010 3:51 pm

@sbr487

re: your query on whether congenital or not:

In 1943, Ehrich and Krumbhaar (6) performed anatomic dissections in 412 cadavers and found obstructive lesions in 23.8% of the left common iliac veins. Histologically, these lesions did not represent chronic recanalized clot; rather, they were composed of elastin and collagen, without inflammatory cellular infiltration or irregular arrangement of scar. They also found that 33.8% of lesions occurred after the 1st decade of life and concluded that the lesions were acquired and not congenital.

http://radiology.rsna.org/content/233/2/361.full
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Postby magoo » Wed Jun 23, 2010 4:12 pm

cheerleader wrote:Barb Farrell has been treated in the US. Her jugular veins were seriously stenosied, and she had angioplasty in the right, and stenting on the left side. She was also found to have May-Thurner disease. As mentioned at the beginning of this thread, Dr. Simka noted that the jugular veins of pwMS looked like May-Thurner veins. By entering on the LEFT side, Mrs. Farrell's IR found out that her venous disease is systemic.

I believe this will be the key. Systemic venous disease. May-Thurner was the first one diagnosed....CCSVI is the sister disease in the neck/chest. The veins have not been studied. We are at the brink.

Barb is SPEAKING (she had lost the ability to talk.) She is moving her feet (she had lost motion) and lifting her arms. Her husband is ecstatic.

I believe this is going to be the case that will change CCSVI research. We have correlation with a known venous disease....continued prayers to Barb Farrell and her husband and son. She was a brave soul, to travel and undergo treatment far from home. We should all be grateful to her.

cheer


Tears.......for Barb and for this important connection. She is a hero.
Last edited by magoo on Wed Jun 23, 2010 5:07 pm, edited 1 time in total.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby elyse_peace » Wed Jun 23, 2010 4:59 pm

I'd like to add my prayers for that brave family.
This news is inspiring and comforting. I don't remember many comforting components of this journey.
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Postby Guider » Wed Jun 23, 2010 10:30 pm

Hi to everyone.

I am unable to express the feelings I have on hearing the reports on Barb Farrell and the co-relation to a known disease. I just feel this is history in the making and it is giving me goose bumps.

I sincerely thank God for this break through and pray for continued perseverance with great results for her and her family.

I also give thanks for whoever made this possible. They too must be ecstatic as they watch this unfold.

Thank you so much for the post all of you place on these forums.

Guider
Live to the fullest; Love passionately; Laugh contagiously!
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Postby TMrox » Thu Jun 24, 2010 7:31 am

Some references re MTS

May-Thurner syndrome (MTS) is caused when the left iliac vein is compressed by the right iliac artery, which increases the risk of deep vein thrombosis (DVT) in the left extremity. DVT is a blood clot that may partially or completely block blood flow through the vein.

Most people do not know they have MTS, but it is identified when they present with a DVT.

Patients should seek treatment for symptoms, including swelling, pain or tenderness in the leg, feeling of increased warmth in the leg, redness or discoloration of the skin, or enlargement of the veins in the leg.

Even though DVT itself is not life-threatening, the blood clot has the potential to break free and travel through the bloodstream, where it can become lodged in the blood vessels of the lung (known as a pulmonary embolism). This can be a life-threatening condition.

DVT can also lead to complications in the legs referred to as chronic venous insufficiency link (also known as post-thrombotic syndrome). This condition is characterized by pooling of blood, chronic leg swelling, increased pressure, increased pigmentation or discoloration of the skin, and leg ulcers known as venous stasis ulcer.


http://my.clevelandclinic.org/disorders ... drome.aspx

http://radiology.rsna.org/content/233/2/361.full

Here is a support forum to MTS.
http://www.maythurnersyndrome.com/
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Postby bossman » Thu Jun 24, 2010 7:39 am

GOD is GREAT and full of LOVE!!!
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