Liberation therapy; Corner Brook couple disagrees with MS

Gary
Gary Kean
Send to a friend

Send this article to a friend.

CORNER BROOK — Bram Russell doesn't think the study the provincial government had done on the so-called liberation therapy treatment for multiple sclerosis was done properly.

The Corner Brook man's wife, Ada, has been living with the crippling effects of the disease for 17 years.

In January 2011, she underwent the controversial treatment for chronic cerebrospinal venous insufficiency, a theory which asserts that the symptoms of multiple sclerosis can be alleviated by a procedure that opens up veins in the neck that are constricting blood flow.

Russell never regained enough strength in her legs to stop using a wheelchair, but has had renewed energy and upper body strength and other improvements in her quality of life since travelling to India to have the procedure done. Among those improvements was the ability to hold her head up straight after years of it being slumped over on her shoulder because of her weakened neck muscles.

Earlier this month, the provincial government unveiled the findings of a 12-month observational study of 40 patients with MS, 30 of whom had underwent the procedure and 10 who had not.

During the study, participants were examined at one-, three-, six- and 12-month intervals, and their results were compared to baseline results.

Dr. William Pryse-Phillips, emeritus professor of medicine (neurology) at Memorial University and lead researcher of the study, said participants did self-report notable improvements in physical and psychological well-being in the first three months post-procedure.

However, he concluded that, after one year, there were no measurable objective medical changes in the observed patients who had underwent the procedure.

The Russells had applied to be part of the study, but the travel costs they would have had to incur to participate were prohibitive. Bram said he and Ada would have had to go to St. John's on their own dime for the four evaluation checkpoints during the 12-month study.

"It was just too stressful," he said. "If there had been someone here in Corner Brook we could go see, it would be different. For us to go to St. John's that many times just wasn't in the cards."

Russell said the positive changes in his wife are still quite evident 18 months after having the procedure, but that is not reflected in the study's results.

The Russells said they went to India without any expectations and the procedure has given them hope that the lives of some people living with MS can possibly be improved.

"We are always positive that this is going to get better," he said of the couple's unwavering optimism.

He believes there should be trained health care professionals in Newfoundland and Labrador who can do the necessary follow-up examinations for anyone who does choose to undergo the procedure, even if they have to travel abroad to have it done.

He said getting no help from government has been frustrating. He and his wife waited an extra year before deciding to have the procedure done with the hope the provincial government would help them get it done or assist them with the follow-up care.

"(The government) won't do it because they would end up having to pay for stuff people have been talking about all along," said Russell.

In the press release announcing the study results, Health and Community Services Minister Susan Sullivan said the intent of the study was to further the knowledge-base and research around the procedure and the proposed effects it had on individuals with multiple sclerosis.

"We understand that today's news may dishearten some people as we all collectively look to find new treatments and cures for this disease," she stated.

"It is important to remember that this study is but one piece of a greater base of research that is being conducted in many parts of the world, and these results do not preclude Newfoundland and Labrador's involvement in any future national clinical trials involving the procedure."

 

 

  • 1
  • 2
  • 3
  • 4
  • 5

Thanks for voting!

Top of page

Comments

Comments

Recent comments

  • Shirley Renshaw
    June 18, 2012 - 13:31

    Thank you so very much BRAM and ADA! I had the treatment and only had a couple improvements. BUT ... to the nay Sayers it would not mean anything. To me they are HUGE. My quality of life is most important. Too bad people who don't have CCSVI are the first ones to criticize, discriminate and claim to know how we feel. This is so wrong. This is a vascular issue we are dealing with. NOT MS. It is a separate issue but the so called experts refuse to see this. Symptom relief is all we can expect and want for now. Obviously there is something to CCSVI ... why else is there such a big fight ?

  • Marlo Melissa Fehr
    June 15, 2012 - 13:46

    If I've said it once I've said it twice...hell I 've said it more than a million times; these "experts"; who have done the "research" have not done ANYTHING. I beleive they are going by tried and true research done previuosly (10,20,40 years ago!!!) But I'm sure that this is 2012 and there have been remarkable findings and discoverise in THIS century!! However, I think these so called experts want to beleive that this Liberatilon should have meant it was finally a CURE! When this did not prove to be the case they got on their high horse and had to save face somehow! "Someone" wants to be the hero and claim they were the one who discovered the "cure" for MS!! Just like Jonas Salk the man who dicovered Penicillan!!

  • Christopher Alkenbrack
    June 15, 2012 - 11:27

    OK folks, let's get real. I'm truly sorry for those that it didn't work for - and no, the procedure does not provide benefit for everyone. We need not base this on anecdotes anymore. As one Canadian NEUROLOGIST - YES YOU ARE READING CORRECTLY - A CANADIAN NEUROLOGIST WITH MS HAD THIS PROCEDURE DONE - said (my paraphrase) "if we had collected the data from the thousands of Canadian patients, would we still be calling these stories anecdotal!" I have met people who are up out of their wheelchairs after several years......this procedure provided them with the benefit of decreased fatigue and improved quality of life. That increase in energy allowed them to work hard in physiotherapy, and yes, they are walking. Maybe this is a secondary benefit from the suppression of chronic fatigue, but nevertheless they are walking after years of being confined to a wheelchair. I would like to hear from the other people in Newfoundland who feel that this study was poorly designed. Enough money was used by the government that they should have covered travel expenses for those who could not participate to go for the assessments required.....after all, we all live with MS, and we all struggle with making the budget at the end of each month. My opinion is that once again, as Dr. Bill Code has stated so eloquently on an interview in B.C., that the neurological community will continue to "cherry pick" the cases that they want to prove their obvious bias. Why do Canadians have to jump through hoops to have this studied? The principles of so-called Evidence Based Medicine are themselves flawed - please read the book "Tarnished Gold" (The Sickness of Evidence Based Medicine). http://www.amazon.ca/Tarnished-Gold-Steve-Hickey-Phd/dp/1466397292/ref=sr_1_1?ie=UTF8&qid=1339773986&sr=8-1

  • katkam
    June 14, 2012 - 21:18

    Multiple and more well designed studies have concluded that 1/3 improve significantly, 1/3 moderately, and 1/3 have no improvement. Would it not be more prudent to strive towards understanding why? As to measurable benefits, MS patients commonly report unseen symptoms such as heat intolerance, tingling, and pain. Neurologists often prescribe medications to treat invisible maladies, yet when a patient reports resolution of these symptoms post-angioplasty, it is always attributed to placebo. No "measurable benefits" means absolutely nothing to someone who obtains proper bladder function, relief from heat/cold intolerance, or the restoration of sensation to their limbs. Not every, in fact very few, will escape their wheelchair or lose their cane, yet that is seemingly the criteria here.

  • Lori Batchelor
    June 14, 2012 - 18:15

    This procedure may not work for everyone, just like all medical treatments, but it is definitely worth being an option to try, especially for people with no other form of treatment available! I am an example of someone who had excellent benefits--many of which were even "measurable". Since I was secondary/progressive, there was nothing for me except to just wait and get worse. After the treatment, my balance has improved--my neurologist could see that I didn't fall over when I closed my eyes during his test--for the first time in 20 years! He could also see improvement in my drop-foot and right leg strength. Some of my other improvements weren't "measurable", such as no more weekly headaches and no more heat intolerance but they sure mean a lot to me. This NL study ignored many of the valuable improvements because they didn't fit into the "measurable" limits of neurological testing but they sure mean a lot in the quality of life!

  • Joyce Salonen
    June 14, 2012 - 16:05

    Please review information on goffhillltd.com Dr. Tucker has a cure for MS but needs funding for clinical trials.

  • Another MS Patient
    June 14, 2012 - 07:23

    I completely agree with the study. I also had the procedure done last year and in the beginning, I did note some improvement (I'm not sure if it was real or placebo effect). However, there was no physical improvement whatsoever. Also, I believe anyone with atrophied muscles wouldn't notice any major differences in the early stages as these have to be reconditioned over time. You may feel that you have more strength, but your muscles would need to be made stronger over time. It was a very costly procedure and we knew going in that it didn't guarantee a quick fix, but still, we had to try it. That said, it was like taking the money and flushing down the drain!!!! In fact, the dangerous part of all of this was the utter devastation and disappointment when it didn't work. I strongly feel that any procedures of this nature should be carefully monitored through a scientific means before it is made available to the general population.