Improvement reports

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

Improvement reports

Postby Cece » Fri Apr 08, 2011 11:29 am

According to Butcher, she immediately had improved colouration to her face. Other improvements that have been seen over time include better clarity in her voice, and reduced spasticity.

"It's not gone but it's definitely improved," Butcher said of her spasticity.

Butcher also reports having improved sleeping and better flexibility and circulation in the legs.

http://www.emcsmithsfalls.ca/20110407/n ... ul+results
Butcher, who is awaiting word from OHIP on a $7,000 claim to cover the cost of treatment she received in Egypt last year, said previously it made a huge difference in the quality of her life.

No longer confined to a wheelchair, she walks with the aid of canes and has resumed shopping for herself and attending public dances
http://www.thewhig.com/ArticleDisplay.aspx?e=3489933
Last edited by Cece on Sat Mar 03, 2012 7:37 pm, edited 1 time in total.
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Postby Cece » Fri Apr 08, 2011 11:32 am

"Since the surgery, I haven't had that awful MS fatigue heaviness back," said the 33 year old. "And I had that everyday, so its just great."
Shes pretty sure something has changed for the better.

I was in the airport in Orlando waiting to go home and I saw my left hand was pink and warm, she said. The blood was flowing. The left side of my face also felt warm.

Now, only days after her procedure, Murphy is hoping for continued relief from symptoms.

Although the price of a pre-surgery test and surgery came to $9,500, she said the cost is worth it.

If I knew it was going to work, Id pay $100,000, said Murphy.

www.stcatharinesstandard.ca/ArticleDisp ... ?e=3064647
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Postby Cece » Fri Apr 08, 2011 11:34 am

Ben, an independent film maker in his 40s with four children, was diagnosed with MS about four years ago. Four months ago he could barely walk, even with the aid of a walker. His short driveway was an impossible distance. Each time I visited he was getting worse. The obvious was omnipresent — a steady and likely rapid decline to even greater pain and total disability.

Ben knew what was at stake for him and his family, and he took it upon himself to study all the available research and, with little help, to address his condition.

Ben then asked his father for the $8,000 to travel to Orange County, California and have a procedure. He laid down on a gurney and 40 minutes later he got up and walked out of the room a different man, one essentially pain-free, clearheaded and totally mobile.

To me what happened was a modern miracle.

On Saturday, he could have jogged the 3-mile MS "walk." He is still pain-free, clearheaded, and you would never know he has MS ... if he didn't tell you.



Read more: http://www.kitsapsun.com/news/2011/apr/ ... z1IxSVPYSU
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Postby Brainteaser » Fri Apr 08, 2011 6:44 pm

If I knew it was going to work, Id pay $100,000, said Murphy.

I know this is just euphoric emotion, but let's not get too carried away. Most of us would like to see some sustained results first.
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Postby dania » Sat Apr 09, 2011 11:03 am

I am with Brainteaser. We all know it works. But the key thing is to have improvements that last. We are now seeing people going for their second, third etc angioplasty.
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Postby Cece » Sat Apr 09, 2011 11:26 am

$100,000 is a large sum. Thankfully $10,000 is the more accurate number. For me, if this hadn't been covered by insurance, I might've had some doubts about the cost before the procedure but not afterwards.

Here is another news report:
www.bclocalnews.com/vancouver_island_ce ... 42609.html

Of the four valley residents with MS who spoke with the News Leader Pictorial about their experience after the treatment, all noted a marked decrease in fatigue, and the lifting of what’s commonly referred to as brain fog.

“It is the best thing I have ever done,” James said of her overall experience with the CCSVI treatment.

“I have more energy, my speech is so much better, and I have not used my cane since my procedure.

“I can take my dog for a walk without the big walking poles she was always afraid of. It’s just me and her, walking down the road, and she’s walking close to me again. It’s the little things like that that are just so fabulous.”

Rob Darwin reports a similar experience.

“My fatigue level has gone way down, and my energy level has gone way up,” he said. “My balance is definitely improved and I have a clear head — the brain fog seems to be gone. Colours seem to be brighter, objects seem to be sharper.”

Darwin’s been wheelchair-bound for years, but he’s working daily to change that. He’s got a physiotherapist, and does daily exercises at home, working life back into muscles that haven’t been used in far too long.

“I’m shooting a bit high, but if I can feel a little better, I can think about, maybe, possible, starting a family,” she said.

Already, James is doing things she wouldn’t have thought possible not long ago.

“I can carry a cup of coffee from the kitchen to the living room without spilling all over the place,” she said. “I can actually hold a conversation with my husband at 10 o’clock at night.

“My kids have absolutely noticed the difference,” Robertson said of her six- and eight-year-olds’ reaction to her treatment.

“For so long, I couldn’t be active in my children’s sports. There was no way I could make the 5 a.m. hockey practice, or go to the soccer field, and not feel the aftermath of sitting in the cold. Now, I’m helping out the kids’ classrooms. I can run around with them in the field. It truly is life-changing — it’s made me feel like a better mother.”
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Postby griff » Mon Apr 11, 2011 7:10 am

dania wrote:I am with Brainteaser. We all know it works. But the key thing is to have improvements that last. We are now seeing people going for their second, third etc angioplasty.


I fully agree with dania. I think what it counts what we got at the end of the day. If I have a few weeks of improvement and then a significant deterioration that might not be fixed, then what is that few weeks of improvement worth? We do not even know whether those very same people are currently satisfied with their conditions.
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Postby dania » Mon Apr 11, 2011 8:06 am

Thank you Griff! My point exactly! I am so sorry I had it done. I know the procedure works (it did for me) but it did not last and I am now worse than ever as all 3 veins are 100% blocked with scarring. And, I know I am not the only one. I wish there was a registry of all who had it done and reports how they are 3, 6, 9, 12 months afterwards.
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Postby Cece » Mon Apr 11, 2011 8:58 am

www.ctv.ca/CTVNews/TopStories/20110410/ ... ts-110411/

Last year, Lianne Webb was flattened by fatigue -- the result of a decade of living with multiple sclerosis. But 14 months after receiving a highly debated treatment known as liberation therapy, Webb says she feels more energetic than she has in years.

Indeed, on a recent afternoon, she was horseback riding; something that would have been unthinkable before receiving the therapy.

"I feel like I have my life back," she said.

"I would pass out at 7 at night. Now I am riding many evenings," she says.

"I feel great," Webb says, adding that while she may still have MS, "I don't have the symptoms."

Two other patients have reported significant improvements, including Matt Maltese, who only one year ago could not walk up a flight of stairs.

These days, he's back to working full-time and is coaching sports again.

"There is no fatigue anymore … I eat more," he says, adding that he wants to return to his job as a physical education teacher.

That success story is shared by Steve Garvie, a patient who one year ago could barely use his left arm and hand. Now, he can lift his 60-kilogram dog with the arm.

"I don't have any fatigue ... I don't have any bladder issues," he says.

Since getting the treatment, he's moved out of government housing and into a new place with his partner. He sleeps better and doesn't take drugs to control his bladder or to alleviate pain.

Black got her treatment on Feb. 26, 2010, and she still uses a walker and occasionally a wheelchair.

"I was looking for a miracle and I know it didn't happen. But I do feel good. My fatigue is gone. I wish I had my treatment 15 years ago, before my disease got worse."

Gandhi, meanwhile, has had the procedure twice: first in Canada and then last month in California, after ultrasounds showed that his veins had again narrowed.

Still, Gandhi says his mind feels clearer.
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Postby Cece » Mon Apr 11, 2011 9:06 am

Goodyear’s other improvements include better hearing, eyesight and balance. He’s able to sit up in bed or in a chair unattended, which was something he couldn’t do before.

After almost a decade of gradual deterioration, he said he doesn’t expect overnight miracles, but is hopeful he will be able to stand again.

“I don’t know about walking, but it’s looking good and the therapist in St. John’s figures that I will.”

Goodyear said his appetite has vastly improved.

His feet have also returned to a normal pinkish hue from a discoloured shade of yellowish-purple-green.

The Grand Bank resident was diagnosed with MS in 2003 and says his life has improved dramatically since he had the procedure, particularly the ease with which he can now breathe.

“Well, I couldn’t hardly talk on the phone before I went,” he said.

Prior to undergoing the procedure, he said doctors in New York put his life expectancy at 18 months.

www.thetelegram.com/Arts%20-%20Life/201 ... ing-back/1
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Postby Cece » Mon Apr 11, 2011 9:14 am

www.cbc.ca/news/canada/saskatchewan/sto ... -1104.html
Among those who have had second treatments is Saskatoon's Lyle Vindeg. He had his first vein therapy in Bulgaria last summer and said he definitely noted improvements.

"My hands ... I could feel again. They were warm. My feet were warm," he said. "My bladder worked like [it was] supposed to."

Earlier this year, six months after his treatment, he went to California for a routine check-up, thinking all would be well.

He felt fine. However, doctors there told him his neck veins were blocked again.

He had the neck vein procedure redone, but this time with one difference: the doctor made a small tear in a valve inside a vein to keep it from narrowing again.
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Postby Cece » Mon Apr 11, 2011 9:15 am

www.discovermoosejaw.com/index.php?opti ... Itemid=399

Although Frankowski's trip to India was costly, at over $20,000 in expenses, he has had a significant increase in energy since returning.
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‘I went to Poland for an hour-long procedure’

Postby Cece » Mon Apr 11, 2011 9:25 am

Alex Harrold says compared to how he felt this time last month, today he feels liberated. In fact, he says it’s a safe bet to say he feels better than he has in the last 10 years.

“It’s quite amazing,” he said. “I feel better than I have in years, and I can do things that I haven’t been able to do in years.”

Before he left last month, Mr. Harrold spoke with the nor’wester and stated his expectations were not high, and he was going into the trip with an open mind. Now that he’s returned, the message has changed drastically, and he says he wants his voice to be louder than ever before that this type of procedure should be done right here at home.

He continued that for the first time in several years, he can shake hands, and perhaps the biggest change he’s experienced is something many of us take for granted.

“I slept through the night for the first time in at least five years,” he said. “Before I would always have to wake and use the bathroom – now that isn’t the case anymore. It’s incredible.”

http://tinyurl.com/6jpgjgd
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Postby griff » Mon Apr 11, 2011 9:29 am

Cece wrote:www.discovermoosejaw.com/index.php?option=com_content&task=view&id=16792&Itemid=399

Although Frankowski's trip to India was costly, at over $20,000 in expenses, he has had a significant increase in energy since returning.


No one doubts these stories, but I think our point is that we experienced and hear lot of cases where initial improvements turn into something bad. It seems very common now and not only with large ballons. As far as I remember dr Sclafani also took notice of these things this is why he uses ivus now. However, there are still lots of things that should be resolved. Full occlusion, scarring, intimal hyperplasia, just to name a few are still not resolved. As I said we do not even know whether the cited persons are happy with their current conditon. dania and Winni are a good examples for this.

I can only say that with better documentation we would be much more ahead. Some patients might have made different choices. E.g. if the initial price would include a follow up treatment, patients would go back to the clinic and not only emails would account for their status. I know clinic in Europe who does this and they are even cheaper than others.

We are on the same side and we all want to improve our condition but we also want safe treatment.
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MS sufferer's family forced to pay for operation in Egypt

Postby Cece » Mon Apr 11, 2011 9:30 am

Since the operation Teresa’s symptoms have improved, she has more energy, she can see better and the numbness in her limbs has gone.

“I had narrowing in my jugular veins and this treatment, which is relatively simple, has improved my circulation and many of the symptoms of MS have subsided. I felt better immediately and had colour back in my cheeks. It has been life-changing."


Read More www.walesonline.co.uk/news/health-news/ ... z1JEUg6pnA
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