If you’re a stroke survivor or know one, you may have come across Dr. Edward Tobinik while googling stroke recovery or treatment options.
Based in Florida, for a number of years he has offered to treat people recovering from stroke with a single injected dose of Etanercept. Using a controversial and widely questioned procedure he injects the drug into the back of the neck and then inverts the patient at a slight angle so the drug ‘flows’ into the brain.
The results can vary, and examples can be viewed online, including this example.
I watched this a few years ago. Its certainly impressive, but the fact there was a significant cost involved, with no guarantee of success meant I never considered it any further and certainly never showed it to Amanda.
Fast forward to April 2021.
There was a link on a New Zealand-based stroke-support Facebook page to a clinical trial of Etanercept. This had been taking place throughout 2020 but due to a combination of Covid and limiting participants to its home city, the research trust has not been able to secure enough trial volunteers so has opened the trial up to national participants. To be accepted the candidate must be under 60 and had the stroke within the last 5 years. Amanda fitted the bill so far.
The trial is funded by the Australian Stroke Association. Strangely, the drug manufacturer wants no part of any trial program. Perhaps they are happy to recoup their initial research and trial investment from selling the drug for its original purpose (to reduce the signs and symptoms of moderate to severe rheumatoid arthritis)?
But many drugs initially developed for one purpose have been found to help in other, sometimes unexpected ways (think Aspirin and its blood -thinning properties).
At this point I showed Amanda the 60 Minutes clip and asked if she wanted to participate in the trial? She agreed she had nothing to lose even though I explained the trial was a ‘double -blind’ one, meaning neither Amanda nor the researchers would know if she is given the drug or a placebo.
Things moved quickly after this.
An appointment was available for Amanda the following week, provided she got a blood test (7 different blood samples eventually extracted from both arms by 2 different nurses!)
We traveled to Burwood Hospital in Christchurch to attend the first 90-minute appointment. This included a brief physical, a set of cognitive tests and a questionnaire, and then – the jab.
Once injected, Amanda was required to lie down and be tipped gently backwards, so her head was lower than her body for 5 minutes. This allows the drug (if the drug has been used) to travel into the brain and do whatever it does (which is another story; no-one is quite sure how it works… yet).
Amanda’s bed was brought back level and she was asked if she felt any different. The only difference was a general warm sensation in her affected right arm.
The nurse told us they had already witnessed a man regain his sense of smell and another lost the highly raised awareness of peripheral background noise which the stroke had burdened him with.
But the most dramatic had been a stroke survivor who had come into the room confined to a wheelchair and after the injection had sat up on the bed, swung his legs across, stood up and walked down the corridor, followed by his incredulous wife.
Amanda experienced no such effect. But the second visit a month later proved different.
Same procedure: tests followed by an injection. As before she was asked to lay still for ten minutes after being inverted. This time she said the warm feeling also extended down her arm and across her back. On a hunch I asked her to raise her arms.
Up to this point her affected right arm had extremely limited movement in the shoulder, which affected how high and for how long she could hold up and control her arm. This time the arm shot up, almost mirroring the movement of her left arm. She looked at it, almost startled by her own actions. She smiled.
I called the nurse in and got Amanda to demonstrate again. Of course, she could not confirm (because she doesn’t know) if this was the drug in action or not.
This was the second and last injection. The final consultation will be virtual in a month’s time and will be a third attempt at the cognitive and other questions previously answered to see if there are any other apparent improvements.
An Australian clinical trial has already completed and published its findings and they are positive.
Because Etanercept is already a safe and proven drug it won’t have to pass any further safety checks if further trials prove its an effective treatment for stroke.
What these trials are showing is that because every stroke is different, every outcome from taking the drug is different, including no effect at all.
Finally, after more than 15 years of scepticism and claims of ‘snake -oil’ medicine (not helped by the large fees charged by Dr Tobinick), this potential treatment is now being seriously looked at by the wider medical community and what has seemed radical may become mainstream in the near future.
If you are in New Zealand CGM Research are still looking for potential candidates to take part.