Improvement reports

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

CECE

Postby leetz » Wed Apr 13, 2011 8:16 pm

you rock!!! many thank's for posting all of these...i can add that i had the procedure on the 20th of December 2010, Dr. Siskin...did quite well for about 3 week's...then back to same condition...it is my personal choice to wait for more research before going back to do it again...who is the next scientist to make stent's for vein's? cannot wait for that one :)) Thank's cece :))
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: ccsvi

Postby CureIous » Wed Apr 13, 2011 8:49 pm

blossom wrote:i agree with dania. although there was some info. on clots intimal hyperplasia etc. --at the forefront i and i think most at that time were seeing and hearing-it's a safe procedure-it's done all the time in other health problems yada yada. i did not dig deep into this because i was listening to the dr.'s and others saying how safe the procedure is. which the procedure itself is pretty safe BUT i don't recall hearing anything about clots, intimal hyperplasia, the scaring getting so bad your vein is done for and i have not heard yet how many times this can be done before our veins would be shot.

believe me i am not ccsvi bashing and i do not feel dania is. this is just facts. i hope they get this figured out somehow because there is something to it and for some it has been a miracle some got help some nothing and some worse off that are now living a double nightmare.

but, no one twisted my arm but since i am one of the ones that the only thing i came home with was a novicane numb leg and the worry am i restenosing-am i clotting am i scarring? and when can i quit being cncerned about this? so far they say i still have flow will i next doppler? i hope. but since the procedure i am worsening i feel quicker.

one real positive thing it has taken the way ms has been looked at to a whole different level. and there are some real good dr.'s trying hard to help us. but, it still will take the village.

until then i guess everyone will do what they do. at least there is a little more info. of good and bad available. just look real good before you leap.


No, the real warnings back then, were solely about stents, how scary they are, how they may clot, slip, fall into your heart and/or kill you. I saw people, on FB, recommending angioplasty and as long as you didn't get stents, it was "relatively safe". Well, that's relatively true, but if one is going to get medical advice from the internet and act upon it, I say be very very concerned, because when it goes South, the internet is not going to pick up the tab.

This was the problem I saw back then, the boards here, and on FB were so focused on sounding the klaxon on stents, and I'm not saying that's necessarily wrong headed, but regardless, the dangers, and yes, they are dangers, of repeated and overdone angioplasties were absolutely NOWHERE to be found, unless you were really really looking hard. But everyone seemed to be instant experts on stents, and how smart it was to avoid them at all costs. Okay, fine, avoid, but do you also know the effects of overtreating and damaging the vein walls, and how your body may respond to that, and it may not be as harmless and benign as originally touted? That you can almost take it to the bank, that you will restenose, and procedure or not (vs. surgery for example), it's still a trip to the hospital, another prep, another OR, another recovery, another huge bill, and it may not be the last time, but, how many times will your particular veins put up with such insults before they clot off permanently? Assuming that doesn't happen the first time around?

Those kind of warnings. We all certainly know about the "Dangers" of stents, but angioplasty always seems to have side effects, no dangers. Go figure.

I'm not pro-stent, though I have 4 of them, only those 4 am I all for. I'm for the entire story, not just the du jour or what's the most popular at the moment. In that light, the entire reporting community, encased in this thing called the internet, be it media, blogs, fb pages or whatever, is remiss for not underscoring the DANGERS of angioplasty, as much as it did stents with rarely a forethought. Huge disservice as far as I'm concerned.
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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Postby griff » Thu Apr 14, 2011 1:31 am

All these reports sound very nice; however, I feel after reading some of the postings here that the concern is how long these effects can last and what happens afterwards. it seems most of the people get restenosed and many ends up with a condition worse than before the operation.

Another issue is how well documented all these cases are. There are several clinics, hospitals who treat many patients from the conutry where they located. Documentation should be easier to do for those patients. Do we have data on them?

What does neurologists say: "After doing a quick search on the internet we find lots of cases about people who got cured from MS by diet, vitamins, UV light, energy healing, etc.. Did anyone see them? How many people tried these thing and not get healed? Sometimes, patients get cured even from cancer spontanuosly without knowing what caused their cure....."

So, I think the problem is either the clinics do not do a proper documentaion on their patients or the results are not proving our case.
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Postby Liberation » Thu Apr 14, 2011 6:09 am

griff wrote:All these reports sound very nice; however, I feel after reading some of the postings here that the concern is how long these effects can last and what happens afterwards. it seems most of the people get restenosed and many ends up with a condition worse than before the operation.

Another issue is how well documented all these cases are. There are several clinics, hospitals who treat many patients from the conutry where they located. Documentation should be easier to do for those patients. Do we have data on them?



That sounds a reasonable question to ask.
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Despite complications local MS patients back ‘liberation'

Postby Cece » Thu Apr 14, 2011 5:22 pm

Thank you for the comments and, leetz, the compliment. :)

Here are another two improvement reports, with follow-up complications in one of them. It's from last fall:
Almost immediately afterward, Beckon said she felt dramatic improvement.

“A whole shroud of fatigue lifted, there was more sensation in my legs, I could wiggle my toes again, balance better and walk unassisted” for short periods of time, she said.

But two weeks later, the old symptoms began to creep back. Within a month, she was back to the symptoms before the angioplasty. Back in Canada, her doctor sent her for a Doppler scan, which revealed a massive clot at the site of the stent.

Two months undergoing balloon angioplasty at the same clinic in Costa Rica as Mostic, Hamilton’s Mary Jacobs says her MS symptoms have dramatically improved.

“I’ve gone from a wheelchair all the time to walking occasionally with two canes,” said the 55-year-old west Mountain resident.

www.thespec.com/print/article/278171
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'Not available in Canada'

Postby Cece » Thu Apr 14, 2011 5:26 pm

www2.macleans.ca/2010/05/31/not-available-in-canada/

Of the CCSVI procedure itself, she says: “I’m not expecting miracles.” But four days later, she reports the ringing in one ear has vanished, as have her crushing headaches. She’s also able to bend her right leg getting out of bed in the morning and has renewed strength in her hands.
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"Everything is easier" after MS treatment

Postby Cece » Thu Apr 14, 2011 5:29 pm

www.novanewsnow.com/News/2010-09-23/art ... reatment/1

If you ask Darrell Foster how his life has changed over the past month or so he’ll tell you, “Quite simply, everything I do is easier.”

He is able to walk further and faster. His balance has improved markedly. The dizziness he’s had almost daily for the past year has disappeared. The muscle stiffness and tightness he experiences has lessened. The fatigue that used to hit midway through the day doesn’t come anymore.

Almost immediately, he says, MS symptoms that he’s experienced for 12 years – symptoms that had been getting progressively worse – began showing signs of improvement. And it hasn’t stopped.

“I am noticing each day there is always a new improvement,” he says. “I’m literally finding myself saying out loud, ‘Wow!’ on a daily basis because I’ve discovered something new.”

“I really feel like I’ve gone back in time and regained my health. I just feel so lucky on so many levels.”
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Liberation is called a treatment breakthrough in MS therapy

Postby Cece » Thu Apr 14, 2011 5:37 pm

http://tinyurl.com/6e6e3mh

Bart on Woerd from Haaksbergen on February 15 was the third Dutch MS patient who was treated for Katowice Poland CCSVI. "Since then I have made progress on all fronts," he says. "My wheelchair, I no longer needed. I learn to walk again and do things that were impossible earlier this year. "

On December 16, 2009, Geiss was the first Dutch patient in Poland Liberation underwent treatment. Since then, her life changed dramatically. Miscellaneous complaints have decreased or disappeared, such as severe fatigue.

"I had a sense of disorder in my legs, with burning pain. That was after two days away. I have four years had a foot drop. All over. My physiotherapist has never seen anything like. I can back with a plate and a cup of the chamber. My intestines are not clogged. So on. If you're less tired, you can do much more. It is also significant. You will exercise more, so you feel better and you can again do more. So build your fitness up. I am now in an upward spiral. I was a hermit, but go out to eat again and do things with friends. "

Even mid-March, she decided to apply. "I am a teacher of classics and wants to work. Meanwhile I found a job. If someone had said that one years ago, I would never have believed."
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MS patients seek treatment that promises 'liberation'

Postby Cece » Thu Apr 14, 2011 5:45 pm

www.komonews.com/news/local/106282468.html
"I thought, well, if they're blocked, you open them. So I had them opened and I had immediate and profound relief," said Kathleen Lynch of Seattle.
She describes the disappearance of her MS symptoms like headache, fatigue, brain fog and coldness in the hands and feet.

"When you see in your doctor's office a 3D image of your brain and only 10 percent of the blood is getting through that vein, it's a eureka moment! You know that needs to be fixed; you can't sit there and do nothing," said Blake Lemberg, another MS patient who says his symptoms almost disappeared after he was treated for CCSVI at Stanford.

"I used to not be able to stand on one foot. I was irritable and tired all the time. I don't have any symptoms now," said Hubbard's son, Devin.

Rhéaume says she feels about 85 percent better.

"I feel a lot of major improvements. My fatigue is definitely gone, I almost have too much energy. My tremors have greatly reduced. My pain medicine is about half what it was. I'm not as sensitive to temperature changes, and my mental acuity is better.

"I'm way less sensitive and emotional. The depression is basically gone, which is great because it was one of my worst symptoms. So I'm ready to start working and doing the normal stuff I've been wanting to do," she said.

Virgil has had MS for several more years. Her report was mixed.

"The main thing I feel so far is improved fatigue. My energy level is greatly improved since the procedure. And that's a big thing. Also, I would get a loud wooshing sound in my head, which would be so loud I couldn't drown it out or focus on anything else. That's completely gone," she said. "I still have pain and cramping, muscle spasms, and headaches. I still have all of those symptoms."

Many familiar names in this article!
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'Calling the MS detectives'

Postby Cece » Thu Apr 14, 2011 5:52 pm

There was interest in follow-up reports on these patients. Early on I posted one that was a one-year follow-up with still good results. This one is less favorable. Two of the patients retained improvements.

www.heraldscotland.com/life-style/real- ... 1.1063560#

Six months ago, Barry McArthur, 29, from Paisley, stood on the steps of his Katowice hotel the morning after his procedure and announced to the world in an exhilarated voice he felt “a million times better”. His dizziness had gone, he could stand upright unaided for the first time in months and his speech was no longer slurred.

Stephen Law, 47, of Hamilton, was “almost suicidal” before he travelled to Poland, due to the extreme exhaustion he suffered all day and every day and his incredibly poor quality of life. In the weeks after the procedure, however, he felt so well he could clock up 14 kilometres at a time on his stationary exercise bike.

The same effects were heralded by others who had gone through the CCSVI operation in Poland. Train driver Kevin Quinn, from Glasgow, was “totally energised” after his angioplasties. He could walk greater distances and his eyesight and memory improved. Glasgow-born radio presenter “Tiger” Tim Stevens felt a warmth return to his feet for the first time in years. The spasms in his left leg abated. He felt “wonderful”. Meanwhile, a Californian schoolteacher, Deegie Phelps, 69, threw down her crutches and walked unaided, in a scene straight out of an evangelical church healing.

Six months on, however, the reports are disheartening. Barry McArthur has returned to his wheelchair. Stephen Law has lost his new burst of energy and is tired again and, while his cramps are not so severe, they have returned. Kevin Quinn has also regressed. “I’m still working as a train driver but I’ve lost the energy I had. I believe the balloons I had inserted in my veins have collapsed and I’m back to square one.”

Tim Stevens has since returned to Poland for a second procedure. The balloon angioplasty he’d had carried out on the left side of his chest had collapsed and he had a stent inserted. Tim’s voice is again slurred, however, and he still can’t walk unaided. “I tried to climb up a single step the other day,” he said. “My brain thought it could but the leg told it otherwise.”
Deegie Phelps’s later experience throws additional light on the condition. After her regression, she had another vein checked out for blockage, this time the iliac vein in her hip. She was discovered to have May-Thurner’s Syndrome, whereby a vein was being compressed by the right iliac artery. She had a stent put in place. “It’s been three months, now, and the veins that have been stented have stayed open. I have lots of energy still.”
Stephen Law, however, says he doesn’t regret undergoing CCSVI. “I don’t have pain any more. I have the fatigue again, though, and I wish there was more follow-up from Poland but at least the research is moving in the right direction.”
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'MS: Brenda Requier on receiving CCSVI treatment'

Postby Cece » Thu Apr 14, 2011 6:02 pm

www.cbc.ca/news/citizenbytes/2010/11/ms ... tment.html
I was having a lot of memory issues. I couldn't even make up my mind what I wanted to wear in the morning.

Now, I'm having no problem. I just get up and I make plans for travel and do things I need to do. I'm now babysitting my one, four, and six-year-old grandsons most days until two in the afternoon. I never would have been able to do that a year ago, never. It was really difficult to have company or to plan to go out, because I'd never know, moment-to- moment, how I'd be feeling or how long I'd last. I'd never last that long -- even having a conversation took a lot of effort. Now I can have company, I can go out.
I used to have such severe vertigo that if I rolled over in bed, it was like the earth tipped over on its axis. I don't get that anymore.
I've done things I haven't done for a long time. I actually even let go of my handicap parking placard when it expired in August -- I didn't feel in good conscience I could keep it right now.
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'Local MS patient benefits from controversial treatment'

Postby Cece » Thu Apr 14, 2011 7:01 pm

www.drumhellermail.com/home/local-news/ ... india.html

But just over three months later, positive results are showing in the 71 year old man who travelled to India on October 17 to receive the $13,000 procedure.

“We know it’s not a cure,” says Frank, who was diagnosed in 1991, “but it has increased my quality of life. Any little bit that can help means a lot to a person with MS.”

There were immediate changes for Frank after the one day procedure and hospital stay, says his wife Blanche: colour returned to his face, cold feet which many MS patients suffer has faded, he has more energy, better balance, and his restless leg syndrome is gone.

“He looks like his old self,” says Blanche."
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'Donovan’s Christmas gift came early'

Postby Cece » Thu Apr 14, 2011 7:06 pm

http://liberationtreatmentccsvi.com/201 ... ame-early/

Donovan, who was diagnosed with MS more than 23 years ago, said the changes in his life have been remarkable since having the procedure in August.

He said his mobility and balance have greatly improved, he has more feeling in his extremities and his energy level has jumped.
“Last year, the doctor told me he didn’t think I’d walk again and he took my driver’s licence away. Last month, I got it back,” he said.
“They have their grandfather back. They used to go to the hospital every year to visit me and wonder if I was going to die,” he said.
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'Hoping for a multiple sclerosis miracle'

Postby Cece » Thu Apr 14, 2011 7:12 pm

www.thestar.com/article/909376--hoping- ... is-miracle
“I expected the whole numbness to disappear the first day . . . but having circulation in my hands, that is a positive right there and I know something is happening,” she says, also noting that colours appear more vibrant post-operatively. “It's getting better and I guess for me it's going to be a slow process compared to others.”

“My hands, Mike,” she says suddenly. “As I'm talking to you, they're slowly getting better.”

On Friday, back at home, Turner says her symptoms are still waxing and waning.

“It's really weird. They're fluctuating,” she says.

She mentions the vibrant colors, I had that too. But not all patients do? My best understanding is that it is due to hypoxia. So it might be patients who have more severe blockages who experience this, as more severe blockages would mean a greater degree of hypoxia. Let me check if the article says what her jugular blockages were...no, it doesn't say.
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'MS patient goes into debt for treatment'

Postby Cece » Thu Apr 14, 2011 7:16 pm

www.nugget.ca/ArticleDisplay.aspx?e=2871416

It was worth it, she says, for the luxury of casting aside her walking cane and regaining some mobility robbed by the degenerative disease.

Blackburn still has MS, although she says she doesn't feel cold anymore, has more energy, and notices the "brain fog" she has experienced over the years has lifted.

"It's just incredible," she says.
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