OUT OF CURIOSITY HOW MANY PEOPLE HAVE HAD AZYGOS TREATED

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

OUT OF CURIOSITY HOW MANY PEOPLE HAVE HAD AZYGOS TREATED

Postby livabird » Sat Jul 03, 2010 6:16 am

I am returning to Poland at end of July i believe i have restenosed. I really want to push for my azygos veins right i may be the only case with two treated. Has anyone had azygos treated in Poland. From Dr. Simka's report they have only done seven out of 250. I would love to know why.

Liva
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Azygos Veins De-stenosed

Postby MarkW » Sat Jul 03, 2010 11:37 am

Hello Liva,
I have had 4 major veins de-stenosed. Two IJVs and two Azygos that were restricted (I did not know humans had two Azygos veins until recently!). I did not undergo the procedure in Eastern Europe so cannot help with your direct question. Prof Zamboni said the Azygos veins are less likely to re-stenose after treatment. However they are more difficult to diagnose than IJVs as are not viewable by Doppler.
Good luck,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Daisy3 » Sat Jul 03, 2010 12:32 pm

Mark,

How how are you now that you have had the veins unblocked?

Also, do you think if a person was to have the procedure early on in the disease process-whatever the indication, ie, ppms,prms-that it would be of benefit to them?
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Postby Katie41 » Sat Jul 03, 2010 7:07 pm

I had two angioplasties done on the azygos in Katowice, two in jugulars. They checked my daughter's azygos. They were fine. She had two stents in her jugular.
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Postby livabird » Sun Jul 04, 2010 1:32 am

Are you both doing well now Katie. They said my azygos veinslooked bad during doppler but after when i asked said they were fine i just don't believe that.

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Postby lucky125 » Sun Jul 04, 2010 5:09 am

Liva,

There must have been some confusion. You cannot see the azygos with Doppler. It can only be seen with MRV or venogram.

Perhaps they were talking about your internal jugulars which CAN be seen with ultrasound.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby livabird » Sun Jul 04, 2010 5:27 am

That is interesting but he mentioned jugs and azygos veins during doppler god does he really know what he is doing.

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Postby Johnson » Sun Jul 04, 2010 9:37 pm

livabird wrote:That is interesting but he mentioned jugs and azygos veins during doppler god does he really know what he is doing.

liva

I really wondered about that at the time you posted it... I thought that I had been short-changed in my own Doppler at False Creek because they did not check the azygos, but then, it was not checked with Doppler by Simka in Katowice.

I got the assembly line (though very professional) impression in Poland too. I also got the impression of some burn-out on the part of everybody - nurses, doctors, office staff, drivers...

Kasha, at Da Grasso, however, consistently served me great coffee, with a great smile!
My name is not really Johnson. MSed up since 1993
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Postby livabird » Sun Jul 04, 2010 10:19 pm

God everyone is really making me think now. We are all so excited that we have got our chance to get treated but have we been treated the best or just had our money taken and been placated. We are all in such a desperate position. I really believe in the treatment but it has to be done completely not in a partial way. I really want to get to Bulgaria. It seems they have really studied what they need to do and planned everything properly fitst not just jumped in without a fully planned out scenario.

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Postby Katie41 » Sun Jul 04, 2010 11:48 pm

I'm doing well. Becky is having problems, but we expected that as they weren't able to stent one jugular due to the position of the stenosis. We're hoping they will eventually be able to invent a stent that will work for her.

We are both very glad we went to Poland. They were very professional and competent. They follow the accepted practice of ballooning only, if possible, and stenting if the ballooning closes while you are being treated. Dr. Simka has written a paper posted on this site about the reasons for not checking the next day or so to see if the angioplastied veins have restenosed. The doctors and Greg did everything in their power for us. We can never thank them enough.

Each site has its own strengths and its own weaknesses. We found Greg, Tomasz, and Dr. Simka would do anything they could for the patients. Their only goal is to help people. They are actually not interested in making money. There was quite a discussion with other patients and the staff while we were there. Some of the patients wanted them to charge more and make money. They were quite adament about just breaking even and wanting to just help people. We found it quite refreshing compared to the U.S. medical services.

Another difficulty they face is that every case presents differently. Each procedure anywhere in the world brings new info about this condition and the procedures done to help it. This info is shared freely with the other doctors doing these procedures.

One thing I found was that if I had a low grade infection of any type, I would regress. As soon as I figured that out, I quickly treated the infection and rapidly improved.

My husband had me fill out a chart scoring each of my symptoms on a scale of 1 to 10 Prior to Poland, Immediately After Poland, and Now - 3 months later. They totaled up to be 168 Prior to Poland, 17 Immediatley After Poland, and 55 Now. I recently was diagnosed with May-Thurners Syndrome. With that fixed, (which will be done some time in the next three weeks), I should recover at least 11 points, so will be at 43.

It certainly is an amazing journey. The twists and turns (pun intended) are amazing to discover and then to figure out what to do about them. Thanks to Cheer and all those who post such terrific data, we are in a much better position to be able to figure out what to do. Cheer's epithialial health program, diet, the role infection plays, giving blood, May-Thurners Syndrome, the way the different doctors treat the same problem, the in-depth research Cheer and others have done....all of this is a gift for us to use to help ourselves as we wend our way through this maze.

And, of course, 50% of the angioplasties do restenos.
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