Long term results of CCSVI surgery

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

Long term results of CCSVI surgery

Postby DougL » Wed Feb 13, 2013 11:51 am

we always see the amazing videos as pwMS get out of the surgery but we hardly hear of improvements later on.

we are getting close to 2 years since my wife visited Dr. S (and 4 or 5 since she was on drugs - they stopped working when she went to SP)

yesterday at 5:30 am she went to have her shower.

i always beg her to take cold but who really wants to take a cold shower. most times she is barely able to crawl out of the shower afterwards but improves as her temperature goes back down but she never gets back to before the shower status. 20+ years of MS drugs and no change.

she exited the hot shower yesterday felling better than when she went in. i couldn't believe it. pwMS do not get better, they get worse.

CCSVI = HOPE

who would have thought that proper healthy blood flow was important. :lol:
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Re: Long term results of CCSVI surgery

Postby Anonymoose » Wed Feb 13, 2013 3:46 pm

That's wild! What do you suppose happened to cause that two years post-PTA? Neuro-regeneration due to improved perfusion? I had the heat sensitivity thing years ago, before MS was even on my radar...thought it was a bp thing because heat would also make my head pound, but it spontaneously went away. Strange stuff.

Very happy for your wife...few things can make you feel the "same good" as a hot shower or bath. Maybe some shower gels and a back scrubber would make for a good celebration/valentines day gift. :)
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Re: Long term results of CCSVI surgery

Postby Cece » Wed Feb 13, 2013 4:44 pm

So happy for your wife.
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Re: Long term results of CCSVI surgery

Postby CureIous » Wed Feb 13, 2013 6:57 pm

Touche, thanks for the report.

Going on my 4th year, 3 1/2 to be precise. I eat heat for lunch. My foremen love me, I show up and take care of stuff, make their life easier. Head's in the game. Side projects coming out my ears.

Vs pre-treatment, when survival was the name of the game. It just gets better, and better, and better.

Congrats to yours, it aint just the heat, it's the head, functioning, clarity. My young, intelligent and extremely bright and talented foreman today, had a layout on a heavy 10" line we are installing at Chevron refinery. I was like, "okay, but let me lay it out". It was a very complicated configuration. He then hoped my layout was incorrect, I did too, it would involve substantial extra work.

He double checked my work, arrived at same conclusion, realized his original layout was wrong. We're just there to get it done, period. I am no longer a liability to my coworkers, but an asset, and glad to be of service.

5 years ago, that was a pipe dream. It's reality every day since my procedure. Yes, still have lesions, yes my optic neuritis still bothers me, no I'm not in perfect condition, but gooooood enough, will take what I got.

And obviously want others to have the same. We CCSVI'ers gotta stick together, the MS feels like so much yesterday's news. I mean it's no problem if someone shows me where I currently am suffering from it (MS). have waited over three years, I guess it went on holiday. I want the same for everyone.
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 of CCSVI surgery

Postby cheerleader » Wed Feb 13, 2013 7:56 pm

Good to hear from you, Doug. Very, very happy for your wife. My husband has also had continued improvements. Like Cure said, for some, it gets better and better with time. Four years since Jeff's procedure this May. He went downhill skiing last month (something he thought was over) and took some black diamond runs. As a man, who was told his future was grim due to his initial presentation and older age at diagnosis, this is all a bonus round.

One of Dr. Zamboni's first patients, also an older man treated in '07 with a stent in his azygous vein, was recently interviewed for the Italian press. He also commented that his improvements continue, now six years later.
When Paolo Zamboni told me that I had a congenital malformation in the azygos vein and that it was necessary to intervene with a venous stent, which is a metal screen, I immediately said yes and gave my consent. In this way the blood would have a normal flow. Now I can say that I have reduced symptoms of multiple sclerosis. After surgery within an hour I returned to walk independently. Now I work and I do a challenging job dealing with computers and numbers. But over time I realized that I was doing things that before I was not able to do. Now I go for long walks without getting tired. Working with numbers where it requires a lot of memory and time to my great joy I do my job with ease. What I could not do before prof. Zamboni treated me. I do not get tired, I no longer see double. So I went back to live another life. "

https://www.facebook.com/notes/ccsvi-in ... 9320832211

Why do some see such drastic and continued improvements? I'd hoped that by now we'd know--but the roadblocks put up against clinical trials leaves us with some wonderful anecdotal stories, and not much more--yet. Enjoy the bonus round.
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 of CCSVI surgery

Postby Cece » Fri Feb 15, 2013 4:54 pm

Anonymoose wrote:What do you suppose happened to cause that two years post-PTA? Neuro-regeneration due to improved perfusion?

Wild speculation:
Immediate improvements are due to improved cerebral perfusion, improved cerebrospinal fluid flow, reduction of brain stem compression, reduction of optic nerve compression, and any placebo effect.
Long term improvements are due to natural remyelination and the beneficial effect of having a healthy brain environment over time.

Whatever the cause, I'm happy with it. A year ago, I thought I'd peaked and was anxiously awaiting the loss of what I'd gained. Instead I'm better now than I was a year ago.
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Re: Long term results of CCSVI surgery

Postby erinc14 » Sat Feb 16, 2013 7:50 am

:-D
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Re: Long term results of CCSVI surgery

Postby DougL » Tue Feb 19, 2013 7:46 am

Cece wrote:... the beneficial effect of having a healthy brain environment over time.

that is what i am thinking too.
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Re: Long term results of CCSVI surgery

Postby 1eye » Tue Feb 19, 2013 3:25 pm

Over the longer term I'd expected something similar, since my initial results up to a year in were positive. It was not to be, for many reasons I'm sure. In spite of that I continue to believe this was a good thing for me. I wouldn't have missed it for anything.

I have been remembering all the things I used to do. The last biggie was tiling a wall behind a wood-stove, with huge ceramic tiles. That was before I stopped going to work. Of course, I could still also drive, walk, and play guitar, none of which came back after my procedure, even in the short term.

I built a front porch for our old house. It will be there after the house is gone. Recently I watched workmen reassemble a seven by ten foot set of shelves I built out of three quarter inch oak veneered plywood. It housed a couple thousand 78 records my dad collected.

These are some.

They marveled at how straight and square it fit together, so I told them I had used a square and a long straight edge clamped to a ten foot Formica table. But I had only had a hand-held circular saw to make all those cuts. It was enough.

I have been in decline again, since last year. I am afraid it's soon back to the full-time wheelchair for me. I will continue to fight with anything I still have left until I die, because this procedure could be helping millions. Right now dollars and egos prevent it. But many are working to improve it, and maybe the next generation will fare better than I did.

There was a piece on the radio yesterday about a doctor's recent book which says the science of medicine is mired in commercial concerns. He says that people are not getting the best treatments because all it takes to go to market with a new drug is a comparison to placebo. Once a drug hits the market there is no incentive to spend more to compare treatments.

Billions are spent on research. Someone benefits, but the forward progress of common knowledge does not. Only the most successful trials are reported. Drugs are tested on the cheapest subjects available who often have very different genetic backgrounds than the target market, because ethics and money prevent the trials being run anywhere else. That is not science. It may be economics only.

Today I read a piece by Anne Kingston in Maclean's magazine. It's not CCSVI this time. It says children born after the father reaches middle age have a much higher incidence of "de-novo" genetic problems (new to the family tree).

So, realistically, since my son was born when I was 40, he may get "MS"... Epigenetics might say, depending if he "lives right", he has a better chance of not having this problem. Nature or nurture? I hope he is healthy all his life. I hope he never needs a procedure.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Long term results of CCSVI surgery

Postby magoo » Wed Feb 20, 2013 8:05 am

My CCSVI treatments continue to improve the effects MS had on me. The benefits of restoring proper blood flow are nothing short of amazing. It's been 3+ years since my first treatment and I am so thankful for finding this board and the wonderful people on it who helped me find the doctors who treated me. It is disappointing that CCSVI treatment is not an accepted MS treatment yet. I guess it will just take time and patience. It is undeniable that this is the only MS treatment which can reverse some of the most devastating effects of MS.
It's wonderful to hear about CCSVI continuing to improve the health of those treated! I hope we hear from more CCSVIers. Although, I'm sure they are out LIVING, not spending all their time on this board any longer.
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 of CCSVI surgery

Postby cmozena » Wed Feb 20, 2013 10:33 am

Here's my story. Had 2 angios (no stents) last one 2 years ago. Symptoms improved and still remain 'fixed'. 1. Perfect bladder function...was on steady decline with occassional loss of control. Sorry to start with this one but it's current perfection is HUGE. 2. No more random throat tightness. This had begun about 10 years ago and as of first angio (10/2010), this has NEVER happened again. 3. No more Shortness of breath when speaking for any length of time. Know this is fixed cause I love to talk. 4. Slight head tremor gone. Didn't even realize this was there until it no longer was! 5. Right leg hamstring knot gone! For about 13 years, had a painful knot that no one could loosen with massage and 60-80 mg. of Baclofen didn't touch. Still take 20 mg. of Baclofen cause now slight knot in Left hamstring. 6. Vision oddity Fixed. Bizarre 'white light waves' in vision when eyes closed at night. Like seeing the ripple of waves when a stone is thown into still water. Fixed after 1st angion(10/2010).
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Re: Long term results of CCSVI surgery

Postby CuriousRobot » Wed Feb 20, 2013 10:36 am

cmozena wrote: Bizarre 'white light waves' in vision when eyes closed at night. Like seeing the ripple of waves when a stone is thown into still water.


I had this experience POST-angioplasty. In the lower right corner of my field of vision, a squarish object appeared very much in line with what you described. It went away after about 2 weeks.
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Re: Long term results of CCSVI surgery

Postby cmozena » Wed Feb 20, 2013 10:52 am

To wrap up my update. As of 10/2010: my walking was getting worse. Moved onto 2 canes for greater steadiness. After last angio 2/2011, down to 1 cane but as of today, still need a cane. Sometimes, the 2 canes are used just to give my hips a rest. I would have loved to experience the freedom of cane-less walking but that didn't happen. I was dx'd in 1996 but could trace back symptoms to 1986. That puts my MS active for close to 25 years. ..so I'm grateful for where I stand today.
Now for my speculation. 1. The bladder fix may have averted a future decline in this area. 2. The throat tightness fix may have averted future swallowing problems. 3. Shortness of breath fix could be resolution of future breathing issues. 4. Slight Head tremor fix could have turned into full blown tremors. 5. Hamstring knot resolution could have averted crippling leg tightness 6. Resolution of vision oddities could have declined to serious vision loss.
Now these are only my speculations but I take great comfort in the optomistic view that I now enjoy about my future.
I BELIEVE treatment for CCSVI abnormalities are key to rerouting our future health!
Love to all who read this. We pioneers owe it to eachother to keep informed of both the positive and negative events.
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Re: Long term results of CCSVI surgery

Postby erinc14 » Thu Feb 21, 2013 8:04 am

it was because of this site that i found out they were doing it in albany ny, which is not far for me, so i was able to have it done . i always where i be , health-wise, if i didn't have it done .
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Re: Long term results of CCSVI surgery

Postby esta » Thu Feb 21, 2013 12:34 pm

wow. here i thought i was getting worse again, after my 3rd procedure, yet, after reading this i realized i love hot showers and i can do them now, unthinking, yet before it was unimaginable......
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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