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

Postby newlywed4ever » Mon Sep 06, 2010 6:36 pm

AlmostClever wrote:While, yes, I do recommend Albany, I would offer up these suggestions to anyone going there (or anywhere else):

1) Discuss beforehand what the doctor will do IF he (or she) discovers you have May-Thurner's Syndrome.

2) Arrange for a meeting afterwards to discuss the images you will be given on your cd.

It is likely you will be a little foggy right after the procedure and having a planned follow-up to answer questions will be of huge benefit - especially when trying to decipher the x-ray image sequences.

FLOW OBSTRUCTION is the underlying principal of CCSVI. If flow obstruction is found ANYWHERE in the body, I believe it should be looked at closely and repaired if there is any question it is causing an issue.

I am very grateful to Albany for finding my M-T! I am now vigorously seeking consultation and possible treatment for it locally although Albany may not have considered it a serious issue upon discovery.

A/C


EXCELLENT advice, AC! I wish I had done those things while in Albany. And about that M-T, please keep us updated or PM me as I, too, had "the worst M-T" he'd seen but that my body has dealt with it well...?
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Postby AlmostClever » Sat Nov 06, 2010 5:08 pm

I have been treated for my May-Thurner's!

I received treatment from a vascular surgeon in Dallas two days ago. While he went in expecting to find blood clots, he wound up finding that my right iliac artery was compressing my left Iliac vein - classic May-Thurner Syndrome. No blood clots were found, which was good news.

A 14mm x 2cm stent was placed to correct the problem. I am on aspirin and Wafarin, possibly for life. I hope that this will reduce the flow of blood through the collateral vein which had formed and flows into my right Iliac causing opposing flow.

I have been unable to determine whether my leg condition and walking has improved as I am recovering from 2 groin insertions and an uncomfortable hospital bed.

The treating doc also ballooned the left IJV behind my jaw with a 6 mm balloon and nitric oxide. It had essentially closed up. It is possible that this might be stented in the future. I will follow up in January with the same doctor.

I was very lucky to find this doctor. It was impossible to find a doctor to treat me because I did not present with the traditional May-Thurner symptoms of leg swelling and pain - I only have numbness and weakness. Luckily, I knew a retired surgeon who referred me to a good friend of his who was now in Dallas. I called him up and he agreed to meet with me so I grabbed my venogram CD from Albany and was off to see him.

It took little to convimce him to treat my M-T! He started talking about Zamboni (I just smiled and nodded :P ) and actually seemed more eager to see my neck veins and whisked me down the hall where I was attacked by 2 techs armed with doppler ultrasounds at the same time! (One looked at my neck, the other my Iliacs) This dude meant business! I HIGHLY RECOMMEND FINDING A CLINIC THAT DOES THEIR OWN ULTRASOUND TESTING!!! A test performed and/or read by someone else may not be interpreted correctly for what your doc is looking for!

They found my closed up IJV and a date was set in 2 weeks at the hospital to treat it and my M-T. This is another huge benefit of finding a local doctor as opposed to having to get on a long list somewhere else.

I left his office feeling the most satisfied and excited I had ever felt after a doctor's appointment! Finally, someone was open to the idea that it was possibly something else that was causing my leg symptoms instead of MS! This in itself was a huge achievement and a great weight had been lifted off of me!

I can't report anything on the procedure itself. I was completely out from the prep room to recovery. I had a 24-hour hospital stay. I spent the next day resting at a local hotel and drove home the following day.

Two other doctors also flew in to observe my procedure - one from CA and one from VA, I believe. The one from VA was also experienced with TOS (Thoracic Outlet Syndrome) and has been investigating it's relationship to MS.

I was first treated in Albany on 8/26. I felt a slight improvement after 3 weeks, which went away in another week. Dr.Siskin ballooned both of my jugulars and azygous. He also discovered my M-T, which he did not treat, since a collateral vein had formed to route blood fron the left iliac around the obstruction. I AM NOT SAYING THAT HE WAS WRONG FOR NOT TREATING! IT IS UNKNOWN WHETHER THIS TREATMENT IS GOING TO HELP OR NOT!

I was saddened to hear that he no longer looks for M-T during the procedure. I feel it should be the patient's choice to decide whether or not they want to risk stenting and they have the right to know whether or not they have an issue. Few doctors will go in to look only for this when leg swelling is not present. Hopefully he will add it back to his repertoire.

So there you have it! I will report on my progess in future posts.

Thanks to all and especially Nunzio - kudos to you! You nailed this one from the beginning!!!

Cheers!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Katie41 » Sat Nov 06, 2010 7:52 pm

Great post! Congratulations! I agree with you re MT. Sounds like you found a gem of a doctor! Great job!
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Postby Cece » Sat Nov 06, 2010 7:57 pm

AlmostClever wrote:I was saddened to hear that he no longer looks for M-T during the procedure. I feel it should be the patient's choice to decide whether or not they want to risk stenting and they have the right to know whether or not they have an issue.

I agree with you 100%. It's the same reason to look and see if the lumbar veins are hypoplastic or not; even if it can't be treated, it is helpful to the patient to know and it might set the expectations lower or in the case of MT lead you to seek treatment for it elsewhere.

Please keep us updated, I hope you will be feeling better!
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Postby ErikaSlovakia » Sun Nov 07, 2010 1:22 am

Congratulations AlmostClever!
Erika
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
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Postby Trish317 » Sun Nov 07, 2010 6:38 am

Wonderful news! Sending you prayers and good thoughts for healing.
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Postby Nunzio » Sun Nov 07, 2010 7:06 am

That is great Almostclever and I am glad you found excellent doctors and you were properly treated. Thanks for the Kudos.
I am wandering if they also checked your left renal vein. It can also create overflow of the azygous vein.
As you know Zamboni team always check for that.
I found 2 articles from a French author from 1976.
Amazingly enough he figured out that some of the paraplegias were caused by narrowing of some veins. In its article he mentioned the Internal Jugular vein, the Azigous vein, the innominate vein,
the left iliac vein and the left renal vein. and this was more than 30 years BZ (before Zamboni)
The English abstract is toward the end.
http://www.scribd.com/doc/40869216/Intraspinal-venous-hypertension
http://www.scribd.com/doc/40869260/Stenoses-of-internal-jugular-and-azygos-veins
Cece also asked for the full paper.
Best of luck on continuing improvement
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby Cece » Sun Nov 07, 2010 8:04 am

Nunzio, thanks for the paper. I think this fits right in with some previous discussion here that the body could adapt or overcome a single obstructions, but as the number of obstructions increase, the body's ability to adapt is overwhelmed.
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Postby CCSVIhusband » Mon Nov 08, 2010 5:55 am

Great news on the M-T being treated Clever!

I would imagine any vein that is obstructed that has to grow collaterals in order for blood to flow around the obstruction can't be good for you.

Those collaterals aren't meant to be there ... so fixing the problem (the M-T in your case) seems like a good idea.

Any idea on your stent and size?

Best of luck in your recovery.

Edit ... nevermind, I re-read and found you mentioned stent and size.

I would be interested in knowing more about your VA doctor who came to observe with TOS investigation ... PM me if you don't mind please ...
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