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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Katie41
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PostPosted: Sun Jul 18, 2010 2:05 pm 
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Sofia and Nicko, with your histories, you should be able to get an Interventional Radiologist to do a veinogram and check it out. Good luck :)
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CCSVIhusband
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PostPosted: Sun Jul 18, 2010 3:32 pm 
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Here's the paper about vascular diseases and the increased rate of progression of MS ...

http://www.neurology.org/cgi/content/ab ... 74/13/1041

No, no. Don't treat CCSVI though. Studies MUST BE DONE. WAIT 10 YEARS UNTIL WE GET TO YOU ... I'M SURE YOU WON'T HAVE PROGRESSED BY THEN ... :roll:
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vivavie
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PostPosted: Sun Jul 18, 2010 3:52 pm 
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I just had a haha moment! ok I may be slow... It's been 7 years since I could sleep on my left side, 2 minutes and my left is completely numb and painful. There is a spot (more like a mass- nickel size) at the junction buttuck/leg, if I press on it my entire leg gets numb. I never mention it to my neuro, it seemed far from the head! also I always feel as if I am complaining of another bobo;(

Could that be MayTurner?
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CCSVIhusband
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I don't know about May-Thurner Syndrome ... sounds suspicious of something though (I'm no doctor and can't even speculate what it could possibly be). I'd get that checked out ASAP though ...
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adamt
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I had a Catheter venogram and the interventional radiologist said my venous system was fine & just like a normal persons.

but after showing Dr Sclafani my images he believes i have May hurners, CCSVI of the jugulars and possibly the azygos, and that the lumber veins are poorly developed


My left leg has always been the weaker one (most affected one) , would this back up Dr S's May Thurner opinion?

- its only my legs that are affected, my upper body movement is normal
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Katie41
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adamt: it sure sounds promising!
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Katie41
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PostPosted: Fri Jul 30, 2010 10:38 pm 
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CCSVIhusband, the stent I have is 24mm wide/70mm long.
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NotFound
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PostPosted: Sat Jul 31, 2010 4:31 pm 
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adamt wrote:
I had a Catheter venogram and the interventional radiologist said my venous system was fine & just like a normal persons.

but after showing Dr Sclafani my images he believes i have May hurners, CCSVI of the jugulars and possibly the azygos, and that the lumber veins are poorly developed




How does one contact Dr. Sclafani to check their scans?

I attempted to contact Dr. Haacke, but all I got is an e-mail informing me that he can not open my files (even though other recipients were able to open them). The second attempt to e-mail the files was left unanswered and physical mailing of CDs was unanswered.

Also, did you have you whole venous system scanned, because I believe my catheter venography only went "upstairs" (entry was on the right)


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adamt
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PostPosted: Thu Aug 12, 2010 10:50 am 
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Hi all,

after having a false negative catheter venogram,i am soon to be tested and treated in Poland,

Dr Sclafani saw my images and believes i have CCSVI and May Thurners,

as i will be having testing/treatment soon, is it wise to ask the doctor to enter through the left side and treat May thurners aswell as the CCSVI

or would it be better to get the CCSVI treated first then in a separate procedure have the M-T treated?

also, i dont haveany M-T symptoms, would this mean having m-t reatment would not result in improvements/changes

but my left leg is the weaker one, so ...


thank you
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Rokkit
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PostPosted: Thu Aug 12, 2010 11:52 am 
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adamt wrote:
as i will be having testing/treatment soon, is it wise to ask the doctor to enter through the left side and treat May thurners aswell as the CCSVI

or would it be better to get the CCSVI treated first then in a separate procedure have the M-T treated?

Man if you can get them to go in from the left and check for MT while they're there, that's what I'd do. It seems that's Dr. Sclafani's position right now, check it while you have the chance.

It's looking to me like even if you don't have MT symptoms, the problem comes in if you also have an azygous issue then the MT may be giving the blood very little chance to escape the spine. It's the combination of issues that's such a problem. Theoretically.
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Badger
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PostPosted: Thu Aug 12, 2010 12:22 pm 
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I have been missing for a while and the news is not so good but it seems slightly better after resding this post:

I have just returned from a holiday in Greece and I ws required to use a wheelchair throughout.

This is in complete contrast to how I was after my procedure in Poland.

I have just returned and hope to report back after I have carried out further research.

Good luck to all!!!!

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<em>Badger
RRMS 2004</em>
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newlywed4ever
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PostPosted: Thu Aug 12, 2010 7:11 pm 
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Badger - I am so sorry to hear that things have gotten worse for you. I hope you are able to address this asap and get back on your healing journey.

I continue to watch this thread. On 8/5, I was treated in Albany. I had 100% blockage in left IJV and azygous issues (both ballooned). Afterwards, Dr S told me that he thought he had seen the worse MayThurner - until he saw mine!! However, he indicated that my body had effectively dealt with this and he recommended doing nothing. Btw, it is my right leg/foot that is affected.
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NotFound
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PostPosted: Thu Aug 12, 2010 9:39 pm 
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newlywed4ever wrote:
On 8/5, I was treated in Albany. I had 100% blockage in left IJV and azygous issues (both ballooned). Afterwards, Dr S told me that he thought he had seen the worse MayThurner - until he saw mine!! However, he indicated that my body had effectively dealt with this and he recommended doing nothing. Btw, it is my right leg/foot that is affected.


Wow, great to hear that they saw it! When I spoke to Dr. S they were "just" starting to enter on the left and he was not very sure they would see M-T in MS patients.
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Badger
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PostPosted: Fri Aug 13, 2010 2:21 am 
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Where would we be wihout the internet and forums like this.....probably being pumped full of DRUGS by Dr's who claim it is better for you as we can't indulge in anything radical or outwith the norm. Just keep on waiting and waiting and waiting for us to do all the mandatory trials.

It is so good to know I may have something else to tackle now, MTS bring it on!!!!!

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<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Nunzio
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PostPosted: Fri Aug 13, 2010 9:49 am 
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I posted this on Dr. Sclafani tread, but it is relevant here too
Quote:
I discovered a condition called Nonthrombotic Iliac Vein Lesion.(NIVL).http://www.phlebolymphology.org/2009/07/iliac-vein-outflow-obstruction-in-primary-chronic-venous-disease/
It encompasses May-Thurner syndrome but it can be present on both left and right side. The paper explains that it is present in 66% of general population, using venography you can miss 50% of these lesions, but using IVUS you can diagnose >90% of the problems. It is a permissive lesion, not causing problems in healthy individuals but worsening preexisting conditions.
The reason I think this is important is that entering on the left side might miss the right side lesions and some of the left side problems too unless IVUS is used.

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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