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,"
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.”
So, you got everything about your conditions pre and post operation. Most patients or IR's aren't performing treatment to collect data.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.
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?????
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???...eric593 wrote:Most patients or IR's aren't performing treatment to collect data.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.
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?????
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.
Have MRIs come down in price recently? My last MRI was several years ago. My insurance company was billed $8000. That's hardly nothing.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.
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.NHE wrote:Have MRIs come down in price recently? My last MRI was several years ago. My insurance company was billed $8000. That's hardly nothing.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.
NHE
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.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.
1) You've said before that you live in Croatia -- how much is an ultrasound in Croatia?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.
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.
You can get an ultrasound private not more than for USD 20.HappyPoet wrote:1) You've said before that you live in Croatia -- how much is an ultrasound in Croatia?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.
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.
