Improvement reports

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

Postby griff » Sun May 15, 2011 3:55 am

maynaka wrote:Griff,

If the health care in the US is comparable to the rest of the world why is it that people from all over the world come here to receive treatment and also to study?

I second Happy Poet's request, please provide the study info.

M

Do not get offended. :) It was not my intention to start a debate on America vs. rest of the world. :)
The US health care system is probably one of the best in the world. What I said that the quaility is not as much better as the degree by which they spend more than other nations.

Yes, lot of foreigners go to study in the US but there are as many professors from abroad as well who teach in the US. The US has been always famous of the brain drain which it could afford due to its economic power (more and more relying on its military power). :) It is just a matter of time when the rest of the world will stop financing the huge US deficit that is spent on military and keeping the economy growing. :)

You can just read your annual state budget that shows how much money per capita the US spent on health care and do the same for Germany and Russia, e.g. :)
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Postby griff » Sun May 15, 2011 4:03 am

NormB wrote:I wish being stuck with a cooperative Neuro. but mine (Dr F from Ottawa)
wants nothing to do with our pionnering way to get treated by an IR.

Regards,

Normb


And if you just go for regular check-ups without telling him about your operation?? I guess that would be a real blinded test. :)

Here, I told my neuro about my operation. He just felt that I was a little bit careless but he still tries to do his best and no problem between him and me. By the way, he told me that some neurologists who have high respect in my country were very happy about CCSVI theory and they had high expectations as they would be happy to find a cure for this disease as well. However, results are not backing the initial enthusiasm.
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Postby griff » Sun May 15, 2011 4:10 am

LauraV wrote:Griff,
Some IRs are indeed collecting data. I know that Dr. Sclafani is in Brooklyn. His patients complete surveys before their procedure and at periodic intervals after. He asks me for recent MRIs and records, too.

And I don't know if "objective" data of neurologists tells the whole story. Their "objective" data doesn't always correlate with level of disability. My MRIs hadn't changed for years. My neuro kept telling me how good I was doing and yet I saw continued worsening of symptoms. It's one reason why I haven't seen one in 4 yrs.

So I wasn't much help to Dr. Sclafani in that dept.

Laura


Hi Laura,
some neuros think that MS patients should have a good state of mind, therefore they want us to focus on positive things and not on negatives. I agree with them. Many of them do not want drugs to be used as much as it is possible.

Patients' own self assesment is just simply not scientific. Even as an MS patient I would not rely on them. I do not understand why no one can collect official medical reports pre and post operations and process them. Dr Hackee was suggesting that almost two years ago. It seems that nothing happened.
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Postby LauraV » Sun May 15, 2011 7:28 am

griff wrote:
LauraV wrote:Griff,
Some IRs are indeed collecting data. I know that Dr. Sclafani is in Brooklyn. His patients complete surveys before their procedure and at periodic intervals after. He asks me for recent MRIs and records, too.

And I don't know if "objective" data of neurologists tells the whole story. Their "objective" data doesn't always correlate with level of disability. My MRIs hadn't changed for years. My neuro kept telling me how good I was doing and yet I saw continued worsening of symptoms. It's one reason why I haven't seen one in 4 yrs.

So I wasn't much help to Dr. Sclafani in that dept.

Laura


Hi Laura,
some neuros think that MS patients should have a good state of mind, therefore they want us to focus on positive things and not on negatives. I agree with them. Many of them do not want drugs to be used as much as it is possible.

Patients' own self assesment is just simply not scientific. Even as an MS patient I would not rely on them. I do not understand why no one can collect official medical reports pre and post operations and process them. Dr Hackee was suggesting that almost two years ago. It seems that nothing happened.


Griff, I guess my experience with neuros has been very different from yours. Mine weren't interested in me having a good state of mind. They were more interested in suppressing my hopeful nature, my questions about diet and exercise and my desire to look outside the box at other medicines such as LDN, when what they offered me made me feel worse. They were more interested in me being an obedient, unquestioning patient - someone who would accept their way of "treating" me(like an idiot in my opinion). If they didn't scoff at my questions they got annoyed with me. Their arrogance their attempts to put me down were hard to take. I would always leave their offices feeling worse than when I came in. I thought about the problem being me but I'm a nice person. I don't generally have difficulty getting along with people. I finally decided that I didn't need that negativity in my life, and I never went back.

I know that statistics, data and proof are important in medicine but the traditional model is SLOW and with obstacles thrown at CCSVI treatment from its opponents it will be even slower. MS being a degenerative disease, needs quick intervention. I think it might call for a different type of analysis - some combination of treating doctors data, vein analyses, safety analysis and patients survey responses, since MS presents differently in each of us. "The times they are a-changin" and medical studies should adapt,while still maintaining their credibility.
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Postby maynaka » Sun May 15, 2011 8:37 am

Griff,

I was tempted to go into a lengthy response to some of your comments regarding brain drain, military spending, etc., however; this is not a political forum.

So I will just say thank you for your response.

M
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Postby HappyPoet » Sun May 15, 2011 8:41 am

griff, without links to back up what you say, NOTHING you say is credible, imo

:D
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'Alta woman's MS detiorates months after 'miracle cure''

Postby Cece » Mon May 16, 2011 1:58 pm

http://tinyurl.com/4yppgql
The fogginess in her head was gone, so was the fatigue. Her balance was good, her mobility, strength and endurance improved.

“She came back and she could walk holding her husband’s hand instead of holding on to her husband,” remembers longtime friend Pat Semrok, who stops by the tent where Romanuik is volunteering before the run. “She was able to do little things that everybody else takes for granted for being able to do. It was a miracle.”
“I can’t explain the feeling of normalcy I had for those six weeks,” she says.
The improvements are captured on a video shot by her husband Chris in India right after the treatment. What makes her cry whenever she sees it, is how easily she hopped up on a bed and swung her legs up off the floor, movements she used to have to think to do and that took time to accomplish, and, that she’s back to doing the same way again.
Last edited by Cece on Thu May 26, 2011 6:32 am, edited 1 time in total.
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'Groups host awareness sessions for MS patients'

Postby Cece » Mon May 16, 2011 2:01 pm

www.thebarrieexaminer.com/ArticleDisplay.aspx?e=3124930
Prior to his treatment by McDonald last year, Garvie was living in assisted housing, receiving home care and receiving $40,000 in drugs – largely from the taxpayers' purse.

Now he has regained many of the functions he was losing, uses a cane to get around, lives in his own place and gave up on the drugs.
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Re: 'Alta woman's MS detiorates months after 'miracle cure''

Postby dania » Mon May 16, 2011 2:26 pm

Cece wrote:www.vancouversun.com/health/Alta+woman+deteriorates+months+after+miracle+cure/4787518/story.html
The fogginess in her head was gone, so was the fatigue. Her balance was good, her mobility, strength and endurance improved.

“She came back and she could walk holding her husband’s hand instead of holding on to her husband,” remembers longtime friend Pat Semrok, who stops by the tent where Romanuik is volunteering before the run. “She was able to do little things that everybody else takes for granted for being able to do. It was a miracle.”
“I can’t explain the feeling of normalcy I had for those six weeks,” she says.
The improvements are captured on a video shot by her husband Chris in India right after the treatment. What makes her cry whenever she sees it, is how easily she hopped up on a bed and swung her legs up off the floor, movements she used to have to think to do and that took time to accomplish, and, that she’s back to doing the same way again.

Cece, the fact that people improve after angioplasty, for me is a no brainer. The proplem is not whether you improve but can this improvements last forever. As with this woman whose improvements disappeared.
It would be nice if the doctors could figure out how to make this procedure a one shot deal.
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Re: 'Alta woman's MS detiorates months after 'miracle cure''

Postby Cece » Mon May 16, 2011 2:43 pm

dania wrote:Cece, the fact that people improve after angioplasty, for me is a no brainer.

For me too.
If this thread had been here when I was first learning about CCSVI, this stuff would have blown me away. There were only the reports from Dr. Dake's patients (not all of whom were posting on TIMS) and the first few patients being treated in Poland and of course the CTV report.
I like having this many anecdotal reports in one place, so that reading through you get a sense of the 'wow.' When it works, it really is wow.
The proplem is not whether you improve but can this improvements last forever. As with this woman whose improvements disappeared.
It would be nice if the doctors could figure out how to make this procedure a one shot deal.

I believe Dr. Cumming called it durability. I think the IRs can get closer, but probably can't get all the way to 100% one-shot procedures. No other angioplasty procedure has a 100% no-restenosis rate, although CCSVI is different than other diseases, so still possible.

Part of that is also figuring out what they can do to reduce the complication rate. (No stents, no over-sized balloons, anticoagulant, follow-up care?)
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MS patient’s mobility improves after experimental procedure

Postby Cece » Wed May 18, 2011 12:57 pm

http://tinyurl.com/4yyhcro
"They said ‘Look at him, he’s walking. He’s walking with a cane,’” recalled the Burlington resident.

“Normally, I would come in with a walker. They were also surprised at how straight up I was walking.”
Besides improved mobility, Erskine reported more alertness and comprehension and feeling less tired since the February procedure.

“The fatigue levels were extreme,” said Erskine. “Before, I’d get up in the morning, get my wife and daughter out the door, then I’d have to go back to bed.”
“My hands got warm for the first time in four years and my feet got warm.”
“He’s so much better,” said Erskine’s mother Lyn.
Last edited by Cece on Thu May 26, 2011 6:30 am, edited 1 time in total.
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'Liberation doesn’t mean freedom: MS patient'

Postby Cece » Wed May 18, 2011 1:04 pm

http://tinyurl.com/3lns8bo
“It made a big difference,” said Boland of how she felt after the treatment. “The procedure itself cleared my head. Before I went, I had this glazed-over look, almost like I was stoned on something. As soon as I had it done, my husband told me that look was gone.”

For the next month, Boland was able to get out of her wheelchair more and more.

In January, however, her energy levels plummeted and she found herself back in her wheelchair. She’s still dependent on her wheelchair and, in fact, has since had to renovate her home to make it more accessible because of her prolonged mobility issues.
Last edited by Cece on Thu May 26, 2011 6:28 am, edited 1 time in total.
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'Liberation has helped yet another MS sufferer'

Postby Cece » Thu May 26, 2011 6:27 am

http://tinyurl.com/3ghcgsq
"The doctors said not to expect anything for a month," said Bev. "But she slept better immediately. Her tongue doesn't seem to be as thick anymore making her speech clearer and its been three weeks since the treatment.

When the News first interviewed Bev Downie and had an opportunity to speak with Andrea she was not able to converse at all.

She now responds with short phrases and on her good days even initiates conversation. Previously she did not respond when asked how she was feeling but now says she's feeling "really good" or "great".
Andrea's dexterity has improved since the procedure and she is able to co-ordinate her thumb and finger to pick up items such as chocolate raisins, said Bev.

Nurses at Sunnyside Care Home have reported that she can now take her own weight on her legs for short periods.

"She has life in her eyes and even the colour of her eyes is back," said Bev. "She was able to read the words on an Easter card."

The muscles spasms she found very uncomfortable around her midriff and legs are diminishing and are less severe. Andrea moves her head more freely and with more range, said Bev.

A good one. To see improvement in someone with that severe of disability especially!
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Postby 1eye » Fri May 27, 2011 12:51 pm

Friday:
Today, for the second day in a row, I did not go for a trike ride. My last one was the 5th in 6 days, and lasted 1.5 hours. I went... just a minute, I'll check on some web map application... about 5K each way but it seemed like more. Have to get an odometer or something. It was uphill most of the way back. My left leg still leans inward; have to keep fixing it. Maybe I should get some kind of spacer but it sounds restrictive. Pace was pretty good for me and a 70 year old in pretty fit condition.

Cycle path is great. There's many many kilometers more to go.

When it warms up a bit I'll go for another ride.

Saturday:
Warmer today. 1 hr ride. Mini-mall, parking lot, where girls were having a charity car-wash and their boyfriends were drinking beers at an outdoor pub. At one point, a big Mack truck cab with 4 huge air horns on top pulled right up to the patio tables, and while two girls washed, the rest climbed on the hood for pictures. Truck driver blasted its horns when he left. They asked me if I wanted my trike washed, but I said no. Quick ride home to avoid thunderheads.

Sunday:
1.5 hrs, half a beer, a bite of chicken, and a baby tomato on the way home, at a friend's house. Not having problems with grades being too steep anymore. Working on keeping my weak leg upright. Sun was a tad hotter today without disabling me.

Monday-Friday: out three times, including today. Today, I got dressed, put on my helmet, shoes, gloves, coolers, sunglasses, went outside, locked up, got my trike down off the pile in the garage, opened and shut the garage door, got on the trike, got my cleats attached to the pedals, went to Anthony's house (about 3k), sat around in his yard, called my wife who was on the road in the car, got back on, rode home, put trike on pile, etc. the reverse of assembly. By myself. Nobody else home. John had gone off to Prom day.

Sat. Morning: June 4 - the pile in the garage:

Image
Afternoon: about 1 hr, maybe 3-4 km.

Sun. no ride today. I am surrounded by pessimists... :roll:

Mon. Triana brought her good bike. She and Suzanne went and left her truck at Andrew Haydon Park on the Ottawa river, and drove back. Then the three of us biked there 1 way and drove the truck back. It was about 8km. A beautiful day.

Wed. Hot hot hot. Out for 1hr in 40 Celsius humidex noon sun. Glad for air at home. Watched podcast by medicine man:

You know, some of my colleagues think this is all metaphor. And I say, "Well, that's fine, because you can get a lot of places with metaphor." I think believing it makes it more powerful, but I also know that metaphor is really powerful, too. As a word in Greek, it means basically, "a cart to carry something from one place to another." If you're ever in the Athens airport, those trolleys that you put your luggage on, they're called metaphora. That was what really struck me about that word: it's just something that we use to carry our baggage from one place to another. For people who see all of this as metaphorical, well, that's fine! It can still help them, but I think faith probably ramps it up a notch.
Lewis Mehl Madrona

Fri. 10k today, about 1.5hrs
Saturday no ride, Sunday went for short cruise to friend's house
Mon. no ride, rained all day
Tues. 8k, about 1 hour with Triana, BP = 120/60, weight=180lb with shoes &AFO on.
Wed. same 8k 1hr ride, walked with poles when it cooled off this evening. canucks lost :-(
Thurs. and Fri. 16th and 17th no cycling. Not feeling very well. Up off and on all night waking John due to Rugby concussion. Maybe Saturday will be better? Doesn't help that the dollar and RIM shares are down or that they rioted in Vancouver.

In case anybody is interested, I don't own any. Just seemed like hockey changes everything... Father's day ride was short: we went to a breakfast place.

Tues. rode with Triana 8k, Wed. with Jan, 6.3km by her odometer. Went to Beaver Pond. BarBQ at Stornoway Wed. night. No rides Mon. or Thurs. (June 23d)
Last edited by 1eye on Thu Jun 23, 2011 6:11 pm, edited 14 times in total.
"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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NOTL woman with MS reaps benefits from liberation treatment

Postby Cece » Fri Jun 03, 2011 4:22 pm

www.niagaraadvance.ca/ArticleDisplay.aspx?e=3151785
Instead, the difference she felt immediately was in her head—for the first time in years, she felt like the fog had lifted.

She describes herself pre-treatment as always feeling sluggish and groggy, as if from lack of sleep, even when she had just woken up from 12 hours of sleep.

That feeling was gone immediately, she said—she felt completely clear-headed, been blocked.

Although her feet felt somewhat better, she still had some pain. But since the treatment two months ago, they have steadily improved, with only the occasional twinge at night now.

And the overwhelming exhaustion has gone, so much so that she is constantly on the go, sometimes overdoes it, often has only six hours of sleep, and still feels much better than she used to on 12 hours of sleep.

To those who offer the placebo effect as an explanation for the people who find a benefit from the treatment, she says she had no expectation that it would affect her hearing, or clear her mind—those were surprise bonuses.
Her husband John Kaloyanides says their lives have changed drastically—they no longer have to schedule downtime every other day so Gail can recuperate. They can make plans for the future without worrying about her energy levels.
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