CCSVI and progressive ms

zen2010 · Post by **zen2010** » Tue Apr 20, 2010 2:05 am

Hi
Maybe this question has been raised already (sorry if that’s the case)

I was diagnosed ppms and also CCSVI (narrowing of internal jugular at neck level)

Did anybody suffering with progressive ms has ever reported symptom improvements following CCSVI treatment?
Thks a lot for your feedbacks

sbr487 · Post by **sbr487** » Tue Apr 20, 2010 2:38 am

Probably first visitor from China as far as I can remember.
Welcome to TIMS!

zen2010 · Post by **zen2010** » Tue Apr 20, 2010 2:47 am

sbr487 wrote:Probably first visitor from China as far as I can remember.
Welcome to TIMS!

Thks SBR,
I heard that PPMSer could not benefit from CCSVI treatment... I was just wondering whether it was true or not.

India is actually very close

Maybe I ll meet you one day

sbr487 · Post by **sbr487** » Tue Apr 20, 2010 3:02 am

Hi Zen,

I will look forward to that day. About the PPMS and procedure, other folks here might be in a better position to provide info.

BTW, are in a position to throw some light on the status of CCSVI in China?
For example, in India, now there are multiple choices as to where we can get tested and operated. The competency levels might vary. Still it is early days. Just wanted to know since it is not easy to get inside info from China mainly due to language barrier.

Be well!

Motiak · Post by **Motiak** » Tue Apr 20, 2010 3:08 am

My understanding is that PPMS patients can have relief from some symptoms but it is much more common in RRMS patients. The more important thing is every PPMS patient that I've read about having this procedure has said that their progression seems to have stopped.

sbr487 · Post by **sbr487** » Tue Apr 20, 2010 3:19 am

Motiak,

One question - Dr. Zamboni's paper associates PP with deep intracranial vein issue (if I got it correctly). I also read somewhere that such issues are a bit risky to correct. Any comments?

tzootsi · Post by **tzootsi** » Tue Apr 20, 2010 5:59 am

I believe there are a few PPMS patients on this forum who have benefited from the procedure.

livabird · Post by **livabird** » Tue Apr 20, 2010 8:08 am

Hi
Livabird has PPMS, we arrived in Katowice yesterday.
MRV tomorrow and treatment on Thursday.
You can check out the forum Livabirds Poland Adventure here on TIMS for updates on how it goes, i am also on Facebook where i am posting pictures.
Been and adventure to say the least, we left the UK at 3:30am on Sunday and drove to Poland and arrived 8pm last night....

Donnchadh · Post by **Donnchadh** » Tue Apr 20, 2010 8:18 am

My neuro re-classified me as PPMS after a February exam. I had my first liberation procedure done last month. I had dramatic improvements for five days following, but unfortunately the internal jugular veins have re-stenosis.

search "Donnchadh" for related posts.

Donnchadh

zen2010 · Post by **zen2010** » Tue Apr 20, 2010 6:34 pm

sbr487 wrote:Hi Zen,

I will look forward to that day. About the PPMS and procedure, other folks here might be in a better position to provide info.

BTW, are in a position to throw some light on the status of CCSVI in China?
For example, in India, now there are multiple choices as to where we can get tested and operated. The competency levels might vary. Still it is early days. Just wanted to know since it is not easy to get inside info from China mainly due to language barrier.

Be well!

Hi SBR487

I think ms is not a “popular” issue in China. So it’s quite difficult to get a diagnosis out there
I had to go through numerous tests (blood analysis, scans, lumbar puncture etc…) in a neurological center from France to have a clear answer to my problems.

I never heard about CCSVI testing/treatment in China… When I do, I will provide information there

However, I was diagnosed CCSVI in China while I was suffering from severe headaches (optic neuritis). At this time, I thought it was just a regular migraine

The funny thing is that the Chinese doctor told me “the narrowing of your vein can explain why you have headaches”

.

zen2010 · Post by **zen2010** » Tue Apr 20, 2010 6:39 pm

Donnchadh wrote:My neuro re-classified me as PPMS after a February exam. I had my first liberation procedure done last month. I had dramatic improvements for five days following, but unfortunately the internal jugular veins have re-stenosis.

search "Donnchadh" for related posts.

Donnchadh

Hi Donnchadh,
Thks very much! I feel really better after reading your feedback

ndwannabe · Post by **ndwannabe** » Tue Apr 20, 2010 8:41 pm

zen2010 wrote:
However, I was diagnosed CCSVI in China while I was suffering from severe headaches (optic neuritis). At this time, I thought it was just a regular migraine
The funny thing is that the Chinese doctor told me “the narrowing of your vein can explain why you have headaches” .

Isn't this peculiar! (to us at least

) Doctor "willingly" admitting that CCSVI can indeed cause problems, MS or no MS.

Welcome to the forums, zen!

livabird · Post by **livabird** » Thu Apr 29, 2010 1:55 am

It is very interesthat both optic neuritis and trigeminal neuralgia are associated with narrowed veins. I am now pain free after over a week being liberated time will tell if these conditions i have suffered with for years show up again. I doubt they will.

Liva

Downunder · Post by **Downunder** » Thu Apr 29, 2010 8:28 pm

I have PPMS and was 'liberated' 6 weeks ago. I found out last week that I have re-stenosed, but I do have some small improvements, which I have maintained. The first, I am able to open and hold open my 'bad' hand and I can now touch my thumb to each finger (haven't done that in years!!). My fatigue is better as is my heat intolerance. Small improvements, but I've only ever gotten worse before my procedure.

Surely unblocked veins can only benefit you?!!

Good luck with your journey.

EnjoyingTheRide · Post by **EnjoyingTheRide** » Fri Apr 30, 2010 3:00 am

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