Improvement reports

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

'Controversial multiple sclerosis treatment ...'

Postby Cece » Fri May 13, 2011 2:59 pm

http://www.nugget.ca/ArticleDisplay.aspx?e=2819806
Kim Cooper admits she was disappointed she didn't notice more progress the first two days after the procedure, although her energy level has surged and she is gradually noticing improvements in bodily functions.
"Now that we've gone and I've done it and it was so easy and it was so positive, I'm home and I'm frustrated and angry that other people can't get it done. It's almost like survivor's guilt,"
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''On top of the world''

Postby Cece » Fri May 13, 2011 3:02 pm

www.southerngazette.ca/News/2010-10-26/ ... he-world/1
Two weeks before undergoing the ‘liberation treatment’ for Multiple Sclerosis (MS), Perry Goodyear was put on a puree diet.

Since the surgery Oct. 4, the Grand Bank resident acknowledged he’s back to eating foods of all shapes, sizes and textures.
Mr. Goodyear indicated he’s experiencing “a lot of weird things” in his body, such as the return of sensation in the muscles in his legs. There’s been improvement in the movement of his left arm, and his balance has returned to about 80 per cent of normal.

“I had zero balance when I left here – I mean, zero.”
“I could turn my head and talk on each side. I couldn’t talk on the left side for probably a year now. I couldn’t eat, swallow or nothing on the left side. I couldn’t breathe. All that was back in a matter of 10 or 15 minutes.”
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Postby griff » Sat May 14, 2011 3:02 am

Hi Cece. After reading hundreds of improvement reports here, I am just wondering if there is any MS patients yet who still needs any treatment at all. It seems that drug companies just go bust, all neurologists will retire soon...etc...

All said, I would still have a suggestions. We all see our neurologists once or twice a year at least, so we get a status report at least once or twice a year. We usually get an MRI done once a year. If you do not get it, you can easily ask for it. It costs nothing compared to a CCSVI operation. :) So, you got everything about your conditions pre and post operation.
Why can not any organization or CCSVI clinics collect this data? Why no one even post his/her results here?

My understanding was that Dr Z was campaigning for immidiate CCSVI operations in order not to waste time and that data on these operations can be also processed scientific way and therefore we do not have to wait for long clinical trials. So, now, after TWO years of his announcement I do not see any of this. Clinics just think of raking in as much money as they can and they come out with bullshit reports that based on non-scientific self assesments.

I think any patient with a normal sense and who is in contact with her neuro have her medical reports including MRI from the near past. I guess she would visit her neuro in the near future as well. So, what is so hard to get the results?????
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Postby eric593 » Sat May 14, 2011 3:16 am

griff wrote:Hi Cece. After reading hundreds of improvement reports here, I am just wondering if there is any MS patients yet who still needs any treatment at all. It seems that drug companies just go bust, all neurologists will retire soon...etc...

All said, I would still have a suggestions. We all see our neurologists once or twice a year at least, so we get a status report at least once or twice a year. We usually get an MRI done once a year. If you do not get it, you can easily ask for it. It costs nothing compared to a CCSVI operation. :) So, you got everything about your conditions pre and post operation.
Why can not any organization or CCSVI clinics collect this data? Why no one even post his/her results here?

My understanding was that Dr Z was campaigning for immidiate CCSVI operations in order not to waste time and that data on these operations can be also processed scientific way and therefore we do not have to wait for long clinical trials. So, now, after TWO years of his announcement I do not see any of this. Clinics just think of raking in as much money as they can and they come out with bullshit reports that based on non-scientific self assesments.

I think any patient with a normal sense and who is in contact with her neuro have her medical reports including MRI from the near past. I guess she would visit her neuro in the near future as well. So, what is so hard to get the results?????


Most patients or IR's aren't performing treatment to collect data.

However, the registries being developed in Canada for those treated elsewhere include MRI's to monitor changes. We should have data within a year, I imagine.
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Postby griff » Sat May 14, 2011 3:36 am

eric593 wrote:
griff wrote:Hi Cece. After reading hundreds of improvement reports here, I am just wondering if there is any MS patients yet who still needs any treatment at all. It seems that drug companies just go bust, all neurologists will retire soon...etc...

All said, I would still have a suggestions. We all see our neurologists once or twice a year at least, so we get a status report at least once or twice a year. We usually get an MRI done once a year. If you do not get it, you can easily ask for it. It costs nothing compared to a CCSVI operation. :) So, you got everything about your conditions pre and post operation.
Why can not any organization or CCSVI clinics collect this data? Why no one even post his/her results here?

My understanding was that Dr Z was campaigning for immidiate CCSVI operations in order not to waste time and that data on these operations can be also processed scientific way and therefore we do not have to wait for long clinical trials. So, now, after TWO years of his announcement I do not see any of this. Clinics just think of raking in as much money as they can and they come out with bullshit reports that based on non-scientific self assesments.

I think any patient with a normal sense and who is in contact with her neuro have her medical reports including MRI from the near past. I guess she would visit her neuro in the near future as well. So, what is so hard to get the results?????


Most patients or IR's aren't performing treatment to collect data.

However, the registries being developed in Canada for those treated elsewhere include MRI's to monitor changes. We should have data within a year, I imagine.


This is not collecting data for research. Every doctor must keep record of his own patients, otherwise how the hell he treats him. Then, who follows the patients???...

The current situation is just not acceptable. MS patients go abroad for operation and pay a hell of a lot of money and the clinics do not give a shit about their own patients' status. Is this normal? We all know that patients can not go abroad in every three months for follow-up. So, then, please cooperate with local docotrs. If you have a heart angioplasty, I guess you have to go for check-ups, don't you??? I guess they look at your symptoms as well, don't they???

I guess MS patients still visit their neuros. We got the medical reports. So, speak about facts when someone posts improvement report. Get your pre and post procedure neuros' reports on the net including MRIs. :)
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Re: MRI

Postby NHE » Sat May 14, 2011 4:53 am

griff wrote:All said, I would still have a suggestions. We all see our neurologists once or twice a year at least, so we get a status report at least once or twice a year. We usually get an MRI done once a year. If you do not get it, you can easily ask for it. It costs nothing compared to a CCSVI operation. :) So, you got everything about your conditions pre and post operation.


Have MRIs come down in price recently? My last MRI was several years ago. My insurance company was billed $8000. That's hardly nothing.


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Re: MRI

Postby griff » Sat May 14, 2011 5:09 am

NHE wrote:
griff wrote:All said, I would still have a suggestions. We all see our neurologists once or twice a year at least, so we get a status report at least once or twice a year. We usually get an MRI done once a year. If you do not get it, you can easily ask for it. It costs nothing compared to a CCSVI operation. :) So, you got everything about your conditions pre and post operation.


Have MRIs come down in price recently? My last MRI was several years ago. My insurance company was billed $8000. That's hardly nothing.


NHE


Where do you live? In my country it does not cost more than USD 300. As part of the neuro follow-ups our insurance pays for that. USD 8000 seems a rip off to me. I read some studies that health care in the US is the least effficient in the world. They spend much more than in other countries without having that much better results.
So, how many times does your neuro require MRI? Does your insurance pay for that?
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Postby 1eye » Sat May 14, 2011 5:31 am

I don't know how much the actual cost to the clinic owner is, but a private MRI here is upwards of a couple thousand canadian bucks. I suspect the upkeep is fairly steep on those machines, as they are complex. The operators seemed a bit wet behind the ears at first, so possibly not real expensive talent.

All my MRIs from Ottawa are at the hospital. All my private ones from the clinical trial belong to the drug company. I would not advise having spurious MRIs because the contrast is a heavy metal which can have biological effects and accumulate.
"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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Postby griff » Sat May 14, 2011 5:35 am

1eye wrote:I don't know how much the actual cost to the clinic owner is, but a private MRI here is upwards of a couple thousand canadian bucks. I suspect the upkeep is fairly steep on those machines, as they are complex. The operators seemed a bit wet behind the ears at first, so possibly not real expensive talent.

All my MRIs from Ottawa are at the hospital. All my private ones from the clinical trial belong to the drug company. I would not advise having spurious MRIs because the contrast is a heavy metal which can have biological effects and accumulate.


I accept what you are saying. We somehow needs to find a way to get our condition assessed in an objective way. If IRs do not want to deal with it then we are stuck with our neuros. :)
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Postby NormB » Sat May 14, 2011 8:29 am

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
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: MRI

Postby HappyPoet » Sat May 14, 2011 8:42 am

griff wrote:In my country it does not cost more than USD 300. As part of the neuro follow-ups our insurance pays for that. USD 8000 seems a rip off to me. I read some studies that health care in the US is the least effficient in the world. They spend much more than in other countries without having that much better results.

1) You've said before that you live in Croatia -- how much is an ultrasound in Croatia?

2) Please provide links to the studies that you say mention "that health care in the US is the least efficient in the world." Thank you.
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Postby LauraV » Sat May 14, 2011 10:24 am

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.

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Postby maynaka » Sat May 14, 2011 12:14 pm

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
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'The Expert Patient'

Postby Cece » Sat May 14, 2011 12:53 pm

http://news.nationalpost.com/2011/05/14 ... e-patient/
Mr. Gignac said he had been diagnosed with a rare, fatal form of MS, had the “Liberation” treatment in Albany, N.Y., last November and says that it restored his balance — and kept him alive.
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Re: MRI

Postby griff » Sun May 15, 2011 3:40 am

HappyPoet wrote:
griff wrote:In my country it does not cost more than USD 300. As part of the neuro follow-ups our insurance pays for that. USD 8000 seems a rip off to me. I read some studies that health care in the US is the least effficient in the world. They spend much more than in other countries without having that much better results.

1) You've said before that you live in Croatia -- how much is an ultrasound in Croatia?

2) Please provide links to the studies that you say mention "that health care in the US is the least efficient in the world." Thank you.


You can get an ultrasound private not more than for USD 20.

The least efficient does not mean that it is worse than others, but it means that it is way too expensive compared to the result they can provide. Without any link, just check how much money Russia spends on health care and check their results. You can also check the data of other European nations. Sometimes just because you have more money, it does not mean that you are more effective with it (e.g. Vietnam war). It is a general tendency that health care system is getting very expensive (think about MS drugs) and look at the reults. Canadians can also tell you that many Americans are going to Canada for surgeries because it is cheaper there and they can get good service.
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