Long term results

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

Long term results

Postby 81Charger » Thu Apr 24, 2014 3:13 pm

Hi I haven't been reading on here very much for quite awhile. I know of a few people locally that have had the procedure done with having some success with feeling better but it didn't last. In both cases they say that they feel worse now than they did before they went for the procedure. I really don't know everything about their cases but am curious if there are a high percentage of people that have had the procedure done and are still having success and how long has it been. Also was looking for recommendations on where (which DR) to have the procedure done at. I'm in eastern Canada but am willing to travel pretty much any where.

Thanks Glenn
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Re: Long term results

Postby cheerleader » Thu Apr 24, 2014 4:27 pm

Hi Glenn--
It's been 5 years for my husband Jeff since his treatment at Stanford. He is doing better than ever--we hiked to the top of Masada last month. He returned to down hill skiing last year. He walks about 4 miles each day, mountain bikes, and is working full time as a composer for film and TV. His veins have remained open (no further stenosis) He has not had any further white matter lesions or MS progression. His gray matter atrophy has reversed on MRI. He sticks to Dr. Swank's low fat diet, eats mostly colorful veggies and low fat protein, doesn't eat transfats or processed food, stays clear of sugar, gets daily UV rays and takes a few supplements like EGCG and quercetin, to fight oxidative stress.

As far as being treated for CCSVI---realize that it is about a new lifestyle, not just about a venoplasty procedure. Just as if you had angioplasty for a heart condition--a new lifestyle after treatment can maintain the gains. I recently talked about this with Dr. Zamboni, whose wife is now 7 years past treatment with no more MS progression. She works out a the gym and gardens in the sun, to get her UV rays. Dr. Dake has told me that his patients who have remained restenosis free are the most active.

If I were to advise you--do all you can to get your nutritional status and health primed before seeking venoplasty. Look into Dr. Terry Wahls' program, or Dr. George Jelinek's program. Here's the program I created for Jeff http://www.ccsvi.org/index.php/helping- ... ial-health

I continue to write about the vascular connection to MS and MS research on my blog. Endothelial health is essential in this equation. http://ccsviinms.blogspot.com
I hope this encourages you to do all you can for your own health. I also hope others who were treated and maintained the benefit will chime in with their tips.
all best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Long term results

Postby CureOrBust » Thu Apr 24, 2014 8:38 pm

81Charger wrote: I really don't know everything about their cases but am curious if there are a high percentage of people that have had the procedure done and are still having success and how long has it been. Also was looking for recommendations on where (which DR) to have the procedure done at. I'm in eastern Canada but am willing to travel pretty much any where.
Although I am basically a non-responder. I am glad I tried. I have had the procedure three times, with the las being in Brooklyn by Dr Sclafani. I personally consider him to be the most thorough, and he post quite often on this forum.
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Re: Long term results

Postby DougL » Fri Apr 25, 2014 4:03 am

81Charger wrote: Also was looking for recommendations on where (which DR) to have the procedure done at. I'm in eastern Canada but am willing to travel pretty much any where.

Thanks Glenn

i would suggest Dr S in Brooklyn. In my opinion (and only my opinion) he is one of the best and he is close to you. when my wife and i went, we made a vacation of it.

good luck with whatever you decide
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Re: Long term results

Postby 81Charger » Fri Apr 25, 2014 8:19 am

As far as diet goes I follow Dr Swanks diet plus no dairy, eggs and stay away from red meat totally. I am active, work everyday as an auto tech (10 hours). I am rarely sick and if you didn't know me and that I have MS you probably wouldn't know it. I just don't want to wait to long and get worse and it then be to late. I've been relapse free for over 6 years now so maybe I should stay as I am. My neuro says my white matter is getting worse and wants me to go on meds. She's pushing the two that are pill form. I really don't want to do that but when my wife hears that I'm getting worse she gets scared understandably. Not sure what to do...

Thanks Glenn
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Re: Long term results

Postby Cece » Fri Apr 25, 2014 9:29 am

I had a good outcome. It's been three years with most improvements holding or continuing to improve. My MRI has now been stable for 8 years which is since diagnosis.

The experience of your friends -- initial benefits that don't last -- could be due to the techniques. An underdilated vein, if the balloon was too small, would be stretched for a while and then go back to exactly how it was before. An overdilated vein could be injured which might block off the vein and leave the circulation worse off than it started. The use of IVUS with precise measurements can help to avoid either outcome. Dr. Ferral in Chicago, Dr. Sclafani in NY, Dr. Arata in CA and Dr. Cumming in Minnesota are the four IRs I know who are using IVUS in their CCSVI procedures, although I don't know 100% if Dr. Arata still is, because he is ballooning both jugulars whether or not he sees anything, and that's a very different technique too.
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Re: Long term results

Postby 81Charger » Fri Apr 25, 2014 5:47 pm

Thank you for all your replies, I got some thinking to do. I'll keep you guys posted with what I decide.

Thanks Glenn
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Re: Long term results

Postby cheerleader » Sat Apr 26, 2014 1:39 pm

81Charger wrote:As far as diet goes I follow Dr Swanks diet plus no dairy, eggs and stay away from red meat totally. I am active, work everyday as an auto tech (10 hours). I am rarely sick and if you didn't know me and that I have MS you probably wouldn't know it. I just don't want to wait to long and get worse and it then be to late. I've been relapse free for over 6 years now so maybe I should stay as I am. My neuro says my white matter is getting worse and wants me to go on meds. She's pushing the two that are pill form. I really don't want to do that but when my wife hears that I'm getting worse she gets scared understandably. Not sure what to do...

Thanks Glenn


Glenn---not sure what your neuro is referring to about your white matter getting worse? Are you having more lesions without having relapses or new symptoms? Has she ever mentioned how your gray matter looks? We're learning more about the importance of maintaining gray matter volume and how that affects disease progression. Your stability is a good sign!
http://ccsviinms.blogspot.com/2011/12/n ... d-and.html

Something to tell your wife---65% of pwMS remain mobile and active into old age....having the diagnosis should never scare you into doing something you are not comfortable doing. My husband's neuro has been "pushing" Tysabri. He's stayed on Copaxone-- It works for him. But many go without meds. You're doing good things by staying active and eating well.

Here's an article written by a doctor---she has MS, and she had to tell her own neuro "no" to DMDs--it's a pretty great article. http://commonhealth.wbur.org/2012/08/pa ... the-doctor
take care--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Long term results

Postby Ernst » Sun Apr 27, 2014 11:46 am

My wife got quite optimal response to angioplasty almost 4 years ago. Her MS symptoms were fatique, balance issues, heat problem, low moods, weak right side and some neck pain (tension). We were quite ammazed when ALL her symptoms disappeared in following weeks. Benefits have lasten now almost 4 years and she is in very good physical (and mental) condition. She started exercising with weights few months after procedure and I bet that has been good solution and good nutrition too. I dont this she is cured from MS.. but this has been very, very encouriging time after PTA. I just wish everyone could have good results.. but there is much work still with research.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re: Long term results

Postby magoo » Sun Apr 27, 2014 1:09 pm

I've had great results with my procedures since 2009. I've had three. Best decision I've ever made. I've also had no progression.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: Long term results

Postby CureIous » Mon Apr 28, 2014 11:27 am

All good questions to ask prior to seeking treatment. Those of us with stents seem to have garnered the most consistent, longest lasting results. Obviously we may infer that is due to our veins remaining open, though there is never a guarantee (nor refund for that matter).
Therein lies the rub to the story. Venoplasty alone may prove effective, for a time, then again it may have a lasting effect. There is no way of knowing how it will turn out. A bit less than five years in, haven't seen neuro in four, am working 60 hours night shift in the refining field, but that's just me.

I also personally know at least three who were treated via venoplasty that had good improvements only to lose all and then some. It is a weighty decision. Seek advice often. Verify. Toss brochure in garbage and ask for patients references. Trust me when I say this, some Drs treating CCSVI do not deserve that license on the wall. Talk is cheap. Your life isn't.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Long term results

Postby QueenMum » Wed Apr 30, 2014 12:47 am

Hi Glenn,

I whole-heartedly recommend Dr. Sclafani in Brooklyn.

After 3 venoplasties in California, (with improvement, but not a lasting change in my ability to walk) my husband & I travelled cross country to seek Dr. Sclafani's wise counsel & expertise. Dr. S preformed another venoplasty the first time I saw him because my first 3 were performed without the benefit of IVUS & therefore, I was probably under-ballooned. IVUS made sense to me. Dr. S also said that if I restenosed after this venoplasty, the only thing he had left was stenting where needed. I agreed & said, "that's why I'm here!" I now am the proud owner of 5 stents.

Although I am still not walking, I am improving in small ways almost daily & this is almost 2 years after my first treatment with Dr. Sclafani. With each improvement, I set a new goal, which remarkably become a new reality.

We are all different in this forum. But the common thread that binds us is a need to understand WHY???
The "answers" I got from neurologists were non-existent or never made any sense to me. I found this forum & a world of WHY seekers that gave me hope. I am 61 years old & can look back on my symptoms over time & know I've had ms for around 21 years; but was only dx 11 years ago. I'm sure I am older & more symptomatic than you are. I got lasting improvements with Dr. Sclafani. I wish the same for you.

PS: My Hubby & I visited New Brunswick 6 years ago while celebrating our 33rd wedding anniversary. Such a beautiful part of Canada!
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Re: Long term results

Postby 81Charger » Thu May 01, 2014 7:44 pm

Thank you all again for the additional replies, it's very encouraging. Dr. S certainly seems to be the favourite. At times I get a blurry left eye so this is what has me worried (my first symptom was double vision) but I just can't decide if I should wait for more research or go soon. I change my mind daily.

Small world it's pretty neat that you've travelled to NB, hopefully you'll return someday.

Glenn
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Re: Long term results

Postby tiltawhirl » Fri Jun 13, 2014 7:14 pm

Hi Glenn,

I don't post much but my 2 year anniversary passed in April. All results have continued to hold. Amazing results. No stents. No diet changes. Obviously it does not work for everyone, but for me in changed my life completely. I went with whom I consider to be the best after my own research: Dr Sclafani
My six month pre-post video:

https://www.youtube.com/watch?v=RhosV4_DvWw

All the best as you continue your journey.

tilt

edited to add: No new lesions and no active lesions in my MRI's since the procedure. Original diagnosis was SPMS.
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Long term results

Postby MSandI » Sun Jun 15, 2014 10:14 am

Hi Everyone
I am just wondering about all those who have posted here. What is your ms type? I personally know of 4 ppms that have had ccsvi and only 1 of the 4 had a decent result. The 1 with decent recovery only lasted about 2 months and has gone back to her wheelchair. I belive that they were preformed in Albany? Not 100% sure. There were 2 females (sisters), with ppms . One of the 2 sisters is the only one that had positive results.
Ann
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