CCSVI and progressive ms

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

Postby sbr487 » Fri Apr 30, 2010 3:20 am

EnjoyingTheRide wrote:I have PPMS and was liberated on March 17 by Dr. Sclafani- angioplasty of both internal jugular veins and azygos vein. Zero changes noticed after surgery. Too bad, right? Not necessarily. If I can keep saying this month after month, I win.

You can read about my experience at:

http://www.enjoyingtheride.com/search/l ... ment%20Log


etr, your post makes me think ...

- do we know if type of MS is linked to the level of stenosis or the location of stenosis
- do we know if more severe form of MS will not yield to angioplasty and need stenting
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Postby EnjoyingTheRide » Fri Apr 30, 2010 3:40 am

sbr487 wrote:
EnjoyingTheRide wrote:I have PPMS and was liberated on March 17 by Dr. Sclafani- angioplasty of both internal jugular veins and azygos vein. Zero changes noticed after surgery. Too bad, right? Not necessarily. If I can keep saying this month after month, I win.

You can read about my experience at:

http://www.enjoyingtheride.com/search/l ... ment%20Log


etr, your post makes me think ...

- do we know if type of MS is linked to the level of stenosis or the location of stenosis
- do we know if more severe form of MS will not yield to angioplasty and need stenting


Well, we don't know a lot, but we do know a few things. Dr. Zamboni noticed a definite correlation between location of stenosis and MS type. In his paper found here:

http://www.ctv.ca/generic/WebSpecials/p ... _final.pdf

on page 1352 Dr. Zamboni notes this about PPMS patients in his study:

"Type D pattern (18%) is characterized by the multilevel
involvement of the AZY and lumbar systems. Association
with the IJVs was observed in approximately 50%
and caused an additional obstruction in these patients.
It was observed in two of 35 RR patients, in one of 20
SP patients, and in nine of 10 PP patients."

So there is a correlation between type of MS and location of stenosis.

As to your next question, there seems to be less re-stenosis in the azygos veins than in the IJVs. From page 1353:

"The risk of restenosis in the IJVs was 16-fold higher compared with the AZY after PTA in CCSVI cases."

So, following the logic, there would be less restenosis with PPMS patients than with other patients, but these are simply course trends in very early research.
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby sbr487 » Fri Apr 30, 2010 3:52 am

EnjoyingTheRide wrote:
sbr487 wrote:
EnjoyingTheRide wrote:I have PPMS and was liberated on March 17 by Dr. Sclafani- angioplasty of both internal jugular veins and azygos vein. Zero changes noticed after surgery. Too bad, right? Not necessarily. If I can keep saying this month after month, I win.

You can read about my experience at:

http://www.enjoyingtheride.com/search/l ... ment%20Log


etr, your post makes me think ...

- do we know if type of MS is linked to the level of stenosis or the location of stenosis
- do we know if more severe form of MS will not yield to angioplasty and need stenting


Well, we don't know a lot, but we do know a few things. Dr. Zamboni noticed a definite correlation between location of stenosis and MS type. In his paper found here:

http://www.ctv.ca/generic/WebSpecials/p ... _final.pdf

on page 1352 Dr. Zamboni notes this about PPMS patients in his study:

"Type D pattern (18%) is characterized by the multilevel
involvement of the AZY and lumbar systems. Association
with the IJVs was observed in approximately 50%
and caused an additional obstruction in these patients.
It was observed in two of 35 RR patients, in one of 20
SP patients, and in nine of 10 PP patients."

So there is a correlation between type of MS and location of stenosis.

As to your next question, there seems to be less re-stenosis in the azygos veins than in the IJVs. From page 1353:

"The risk of restenosis in the IJVs was 16-fold higher compared with the AZY after PTA in CCSVI cases."

So, following the logic, there would be less restenosis with PPMS patients than with other patients, but these are simply course trends in very early research.


Not to mention there are cases where no improvements are seen.
Assuming, they do have CCSVI (somewhere), what was corrected was not the primary culprit. I wish we had Dr Schelling answering some of our questions ... definitely time has come to take the research to the next level ...
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ppms

Postby maureen196113 » Wed May 19, 2010 11:32 am

I leave on friday to go to poland, i have ppms and agree if it doesn't progress anymore perfect. And i win. I look at it like this, with treatment, i dont know where i'll be this time next year.without treatment i do and that 's worst than i am now. I feel i don't have a choice. Keep the post coming. will post something when i get back .....
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Re: ppms

Postby EnjoyingTheRide » Wed May 19, 2010 11:39 am

maureen196113 wrote:I leave on friday to go to poland, i have ppms and agree if it doesn't progress anymore perfect. And i win. I look at it like this, with treatment, i dont know where i'll be this time next year.without treatment i do and that 's worst than i am now. I feel i don't have a choice. Keep the post coming. will post something when i get back .....


Best of luck Maureen. You are doing the right thing.
Mitch
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Postby livabird » Wed May 19, 2010 12:02 pm

i have PPMS and was liberated in Poland April 21 I have some improvements but I believe as I have had PPMS for thirty years it will take time. I had stenosis in both jugulars right was completely blocked and had to be stented. I guess this would answer the question O did have stenoses in both jugulars. I also very strangely as Dr. Simka had never seen this before two adygous veins. They did not need stenting. I believe in all forms of MS there will be blockages and unblocking them should help.

Liva
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Postby Rokkit » Wed May 19, 2010 12:06 pm

Liva, I can't help but notice you aren't having to type in all caps! :D
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ppms

Postby maureen196113 » Wed May 19, 2010 2:41 pm

That's great , glad you are seeing a difference or changes. we must look at that as a bonus right. I was told that i proably have had ms all my life. I can't remember when i din't suffer from this inner heat . Also i can't ever remember sweating in my life. Not any part of my body. In summer i use a spray bottle filled with water and turn on a fan,,,lol But i didn't get an mri untill 2004 or 5 to say that it was a postive. I've never had an mri after. looking forward to futhr posts everyone. thanks for the well wishes...
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Postby Vhoenecke » Wed May 19, 2010 4:50 pm

Good one Rokkit, I agree with you about the all caps. I think Liva has a lot more improvements than she realizes. All of us that have been liberated have more than we realize. I find new things each day that are better and it has been 3 weeks.

val
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Postby Billmeik » Wed May 19, 2010 7:03 pm

Buffalo found ccsvi in 81% of ppms patients. They found a strong correlation between how bad one's ms is and how bad their ccsvi is.
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PPMS liberation experiences

Postby Trent » Thu May 20, 2010 8:31 am

As there are fewer of us PPMSers it seems to me important that those who have already had treatment should post their experiences over the long term, as, despite Zamboni not being very encouraging about the treatment on PPMSers, there are some such folk who have and are making progress. We need to hear more from them in ongoing situation.

When I found out about the Essential Health Clinic's intentions to offer the scans and treatment in Scotland all the July appointments - 2 weeks, and August - 4 weeks, had gone. When the Sept/Oct waiting list opened it took me 6 hours online to complete a booking as te site kept crashing. Eventually I was given a reference number in the low 700's. The waiting list closed again later the same day. Does anyone know what numbers went up to by te end of August?

The EHC say they have up to 2000 bookins, but hope to deal with everyone before Christmas. This looks like a higher rate than Dr Simka's 4/day. Has anyone a view on this?
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PPMS / SPMS or what?

Postby Trent » Mon May 31, 2010 3:26 am

I've been dx since the mid '80's, but have not been told what sort. I've presumed it is PPMS as it has been a gradual downhill struggle. MRI's were not commonly available at the beginning, in the late '70's.

About 2002 a neuro offered me an MRI, but there didn't seem any advantage so I declined. He also offered steroids, either IV in hospital for a week, or oral. Again I declined. He must have put a doseage in my notes because a year or so later I suddenly lost the use of my legs. A w/e phone call to a doctor on call produced a prescription for oral steroids - a week / 6 hourly of presidnole (sp?) at what seemed a very high dose - I think it was 500mg. I know I queried it with the pharmacy. After 2 (two) tablets I was back to 'normal'.

My question is - does this 'once only' attack suggest PPMS or RRMS? The resulting info might have a bearing on the benefits of CCSVI liberation.

I am considering trying to get another prescription of the same as I no longer have strength in my legs, but this has been gradual, not sudden like before, so may not react in the same way. I have difficulty getting in/out of the passenger seat of the car, and my wife's back is preventing her from hauling me out. I haven't been anywhere except the garden since Christmas. I do have an appointment booked for a scan and, hopefully, treatment in the early autumn in Scotland, but I have to get there first.

Any views welcome.
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