Improvement reports

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

Re: Improvement reports

Postby Cece » Thu Mar 22, 2012 6:10 pm

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-4635.html#p156455
drsclafani wrote:These are perhaps my ten most memorable reports from patients. they are not typical, for most patients have slight changes, that are sometimes pregressive improvements over time, others may not even be real. Other patients have never given me a followup

I ask all my patients now to send me a monthly email on their 'Liberation Day". hopefully many will do it so i can put what i do in perspective.

of course, i have said many times, my goal is to prolong time to disability. Everything else is a joyful surprise or a frustrating disappointment.

So here is the cases i will share with you

1. i its like all of a sudden someone took off my glasses and washed all the smudges off. But i wasnt wearing glasses.

2. i was so tired that i have never stood by the family bonfire as long as my kids can remember. Now i do. A few months later i am cross country skiing with my wife in the evenings.

3. I had a patient who was a wall walker, day after the procedure he came back and stood on one leg for what seems like a long time, and then rode a bicycle two weeks later.

4. i see in technicolor

5. I am less tired

6. I can harvest the winter wheat driving the combine and walk on the uneven terrain of the mud without falliing

7. nothing has changed

8 i feel worse, my balance is not as good

9.My feet are warm now

10. everything looks sharper and clearer
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'Doctors talk about controversial treatment for MS'

Postby Cece » Tue Mar 27, 2012 4:28 am

http://abclocal.go.com/kgo/story?sectio ... id=8596500
Carol Schumacher says she is finally able to walk without a cane and she believes her improvement is the result of a controversial treatment for multiple sclerosis. A year and a half ago she showed us images taken just before doctors performed angioplasty, and placed a stent in her jugular vein to increase blood flow to her brain.

"Before I had to have the cane and I wouldn't dare walk a block without it," said Schumacher.
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'Multiple Sclerosis motion passed'

Postby Cece » Tue Mar 27, 2012 4:29 am

www.sherwoodparknews.com/ArticleDisplay.aspx?e=3515024
“While meeting with constituents and groups throughout the riding, I was able to see first-hand the life changing effects this CCSVI treatment has had on some MS patients,” he said.

“MS can be so debilitating. When I questioned why a few individuals were not showing up for the group meetings, I was informed that these people are now working.”
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Re: Improvement reports

Postby tzootsi » Tue Mar 27, 2012 6:35 am

Thanks for the link to the San Francisco story - great to see CCSVI getting some coverage here in the US!
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'What's up Doc'

Postby Cece » Thu Mar 29, 2012 10:26 am

I agree, I wish there were more coverage in the US. I tell people what a big deal this is in Canada, with politicians involved and news coverage, and they are surprised.

www.leaderpost.com/health/fighter/6373168/story.html
Docherty’s movements have become stiffer as time goes on, but the immediate effects of the surgeries were undeniable. In Bulgaria, with his newly cleared veins facilitating blood flow through his body, “He was actually pink-coloured,” said Sutherland, who went on both medical trips. “I said to him, ‘You must have got a sunburn yesterday,’ and then I looked at him and said, ‘We weren’t even outside yesterday.’” Docherty moved easily; the stiffness was gone.
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Re: Improvement reports

Postby tzootsi » Tue Apr 03, 2012 7:13 am

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Re: Improvement reports

Postby Billmeik » Thu Apr 05, 2012 8:49 am

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'Medical tourists seek experimental services'

Postby Cece » Sat Apr 21, 2012 4:11 pm

thanks, tzootsi & Billmeik!

http://www.montrealgazette.com/health/M ... story.html
"Before, I was very handicapped, I had no feeling in my hands and most of my legs and feet and extreme cramping. . . . I'd lost pretty much all my voice,'' she said.

"I have feeling now in my feet, the cramping is almost totally gone, my voice is back."
"I really would do it again tomorrow. I was on the fastest track to a nursing home you ever saw. This made my life more bearable.''
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'Liberation procedure changes woman's life'

Postby Cece » Fri Apr 27, 2012 11:24 am

http://www.simcoe.com/news/article/1344 ... man-s-life
“I have more energy, I’m not as tired,” said Murray, who took part in the annual MS Walk last weekend. “(In the past) I would have found a way to participate, but I wouldn’t have been able to do the walk.”
Prior to the operation, “my fatigue was huge, my back pain was huge,” she said. “I couldn’t really walk because when I got tired my leg dragged.”

Her energy levels have improved, though the back pain that had initially subsided has returned.

“Some days the pain is not as intense as it was but it is still there,” she added. “My neck used to be really sore but it’s not sore now.”
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'Perry back working following MS treatment'

Postby Cece » Wed May 09, 2012 8:41 am

http://www.thecoaster.ca/News/2012-05-0 ... reatment/1
It has been almost a year now since having this treatment and with the headaches alone being gone it was well worth it. I don't get as fatigued anymore and I definitely have a lot more energy. The numbness and tingling in my feet and hands have disappeared and I find that my balance is way better. The inflammation of the nerves in my eyes is almost better to and hopefully there will be no permanent damage to my nerves. I don't get depressed any more and I feel so much better about myself.
Being able to go back to work was something Mr. Perry thought he would never be able to do again after being diagnosed with MS.

Since his Liberation treatment ten months ago, he feels well enough to give it a try.
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'‘It is like I have a new life’'

Postby Cece » Thu May 10, 2012 9:53 pm

http://www.thewesternstar.com/Arts-Life ... new-life/1
The Corner Brook woman stricken with multiple sclerosis spent more than 14 years restricted to a wheelchair. She was unable to hold her head up for years, it slumped to her shoulder because of a lack of muscle strength in her neck.

That was one of the disease’s symptoms that went away after she travelled to India in Jan. 2011 to undergo the still controversial treatment based on the discoveries of Dr. Paolo Zamboni.

Russell described the procedure as an awakening from more than 14 years of sleep. She had renewed energy and wakefulness, circulation returned to her legs, and she could breath easier.

“It is like I have a new life,” she said a couple of months after her return from India. “I am like a new person. I can’t explain it, but I am overwhelmed. I can do things now that I could never do (since her onset of multiple sclerosis).”
She can breath better, swallow easier and her upper body movement has improved significantly. Her level of comfort has increased tremendously
Although she was strong enough to be able to sit in an armchair for the first time in more than a decade, she did not regain the necessary strength in her legs to walk.
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Risky MS treatment worth it: N.L. man

Postby Cece » Fri May 11, 2012 11:59 am

http://www.thetelegram.com/News/Local/2 ... N.L.-man/1
Despite the risks, Lane said he's seen his symptoms improve. Lane lost his ability to write with his right hand as a result of MS, and said he can write again thanks to the procedure.

"Myself, I feel fantastic, and I haven't lost a whole lot (to MS). I've lost it and regained it, and lost it and regained it, Lane said. And since my surgery I haven't lost anything."
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'FDA issues warning about controversial MS treatment'

Postby Cece » Sat May 12, 2012 5:47 pm

http://www.ocregister.com/news/procedur ... ccsvi.html
Ian Hubbert, 40, of Long Beach was treated by Arata in 2010. He said the vein widening helped with numbness and his ability to walk.

"That wouldn't deter me at all," he said of the FDA alert. "I've gained many things. I still have MS. I slightly feel some of the symptoms. I'm doing pretty good."
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Re: Improvement reports

Postby Cece » Fri May 18, 2012 1:20 pm

www.radiologytoday.net/archive/rt0512p2 ... 0.facebook
“I’ve had a patient in my office who could barely walk and was using a cane, but three months later, she comes back for a follow-up visit with no cane and wearing high heels,” said Meridith J. Englander, MD. “It was a big deal to her.”
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Re: Improvement reports

Postby Cece » Fri May 18, 2012 1:25 pm

http://www.radiologytoday.net/archive/r ... 0.facebook
“We can attest to significant physical improvements reported in greater than 75% of those with relapsing-remitting and primary-progressive forms of multiple sclerosis,” Mandato said. “Additionally, mental health scores improved in greater than 70% of individuals studied.
“If you go down the list of all MS symptoms, I’ve seen improvement in all symptoms,” [Dr. Ferral] said, “though not in every patient.”

Dr. Mandato and Dr. Ferral, separately talking about improvements.
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