Calls for MS liberation treatment grow louder

David Bell Photo

Rocky Tompkins, pictured here with his mother Janet, recently returned from Merida, Mexico where he received liberation treatment for his multiple sclerosis.

At the beginning of July, the Alaska Highway News introduced you to Rocky Tompkins, a 48 year old Fort St. John man who was preparing to travel to Merida, Mexico to receive chronic cerebro-spinal venous insufficiency (CCSVI) surgery, also known as liberation treatment.

It is a type of angioplasty that many people with multiple sclerosis say is the magic bullet they have been waiting for.

Tompkins arrived home July 14.

“The results are unreal,” he said.

“For me it is like a breath of fresh air. Even if it lasts for five or six years, that is five or six years where the attacks aren't hitting me. It is basically a time out, it is hope.”

CTV's W5 program aired a segment on it last November, which made waves in the MS community.

As it is a relatively new treatment for MS and untested other than anecdotally, it is not available in Canada.

Patients must travel to countries with different medical and legal standards to access the surgery, such as India, Poland or Mexico.

Tompkins said since having the surgery he can now do things that he hasn't done in many years.

“I have not been able to straighten my fingers in about 10 years. I can now. I was sitting in the recovery room wiggling each toe individually. I don't ever remember being able to do that.”

He said his eyesight has improved, he can taste food again and he no longer suffers from debilitating fatigue.

He has had only one mild headache since he returned compared to having them regularly before the operation.

“I don't even know how to describe it. It is a world of difference,” Tompkins said.

Since receiving local media coverage of his trip, he phone has not stopped ringing from people asking about the surgery and wishing him well.

“My phone rings pretty steady. Give it until 2 p.m. and from then on until about 7 p.m. They are nervous about going and they just don't know enough about it. All I can tell them is, ‘you are going to see more results than you can imagine, they may not be the results that you want right now, but in time they will come.'”

Tompkins has become a local poster boy for the procedure, which has recently been the subject of a national debate.

On Tuesday, Saskatchewan Premier Brad Wall announced that his government would begin financing clinical trials of liberation therapy, thrilling many in the MS community.

The Canadian Medical Association Journal, however, has called it a “potentially risky procedure” with very little data to support funding it.

Tompkins is fully aware of the debate.

“The imaging equipment has not been around long enough to do more than a five year study so they are not positive how long it will last and they can't make huge claims.”

Tompkins, however, said he can now make some claims of his own.

“I have no doubt whatsoever that most of me will come back. There may be things that won't but they will come back in a different way.”

He advises others with MS to do research and if the treatment appears to be the right course, do it sooner than later.

“In my opinion there is nothing negative about it, there are minimal hazards. They have been doing this operation now for 20 years for cardiology patients. I would recommend it for anybody who has MS. Do your research, make up your mind and in my opinion go for it and as soon as possible.”

Brent Harris, a friend of Tompkins, will travel to the same hospital in Mexico to have the surgery on Aug. 28.

“We are counting down the days,” said Harris' wife Mary Matthews, explaining that her husband's ability to speak has recently deteriorated.

“Brent has primary progressive MS and there is nothing. There are no pills, there are no other treatments, there is no anything. It is the last thing we can try.”

Harris was diagnosed with MS at the age of 30 – 11 years ago. He moved into a senior's home two years ago.

His family is desperate to improve, to whatever level, Harris' quality of life.

“If it costs $20,000 or $100,000 we don't care,” Matthews said, fighting tears.

“We have to try. This is why we have to try, we have a grandson. Brent would love to be able to do more things with him and if that gives up a chance, we are willing to take that chance.”

Harris also understands there is another side to the issue and like Tompkins, he remains convinced that the risks are worth the price.

“That doesn't even matter. If it prolongs my life it will be a good thing. It will be worth it,” Harris said.

Matthews said Canada should fund and make available the surgery to those in need.

“It is silliness as far as I am concerned that this great country we live in won't do this,” she said.

“It is angioplasty, that is all it is. It is just the most frustrating thing to me.”

Harris was not as diplomatic.

“It seems like we are keeping our heads in the sand. The provincial and federal governments are just stupid. This actually works. It makes a world of difference.”

Matthews agreed.

“When you can't feed yourself anymore and you can't do anything and you live in a care home and have no hope, I don't think they should be allowed to say, ‘No, you can't have this done,'” she added.

“It is a quality of life issue and I think it is wrong.”

Tompkins is taking things one day at a time.

When asked what new goals he had set for himself, he paused.

“I don't even know, I haven't had time to think about it,” he said.

“Get better.”

Tompkins mother, Janet Ferguson, said the generous donations the family received towards her son's surgery helped a great deal.

“We want to thank all the people that donated because it took the financial stress off of this surgery so he could concentrate on getting better and hope. It was all appreciated, believe me.”

She shares her son's hope for the future.

“When you are first diagnosed with MS you go into denial. That is hard as a mother to watch but I see him back now with hope. I see hope for myself for what his future can be. At least there is hope because maybe eventually Canada will get off their butts and start doing it here,” she said.

“I have my son back. Yes I do,” she said.

A garage sale runs Aug. 7 at the old Fort Motors building to raise funds for Harris and two other people living at the care home with MS who hope to get liberation treatment, Holly Osterlund and Colleen Pedersen. Denise at 250-262-2090 is collecting donations for the sale.

CTV W5 report 'The Liberation Treatment': http://bit.ly/8GYULb

Related articles: http://bit.ly/aS0eww and http://bit.ly/9FrYv5

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