For the many people with MS who were first treated for CCSVI in 2009 and 2010, It is more than insulting to be told that your benefits are “short-lived” or “not measurable” or “placebo.” Especially when there is documentation that contradicts this claim.
As many of you know, my husband Jeff had difficulty walking at his diagnosis in 2007, but six years later, he is downhill skiing and mountain biking. Yes, MS is a variable and relapsing-remitting disease, but I would like to propose something.
Jeff has had many tangible and quantifiable benefits from venoplasty.
1. His cerebral blood flow and venous return were measurably increased.
2 His gray matter atrophy reversed, and his gray matter now looks “normal” on MRI. This includes his third ventricle width, thalamus and brain stem.
3. He has had no further white matter lesions, nor has he had another MS relapse.
4. He has EDSS improvement from 1.5 to .5
5. As a 50 year old man who was told he would progress quickly, due to the number of enhancing lesions he had at presentation, these quantifiable measurements, (which would be heralded as great victories for Tysabri or Rituxan, had he taken these drugs) matter.
And we are keeping Jeff’s medical records and his disease process is being followed, now 4.5 years past venoplasty.
Kathleen Lynch made a wonderful suggestion at the NCS conference---I had been asked by an audience member how I believed we could continue to move this research forward, and not let it be tossed into the trash bin-- as the MS Societies, MS specialists and pharmaceutical companies are currently recommending.
Kathleen stood up and suggested that patients needed to keep their medical records and documentation as a scientific proof of their disease process.
If you have documented proof of improvement in EDSS or on MRI, or disease cessation, I encourage you to document this, and keep all of your records on file. I think we may want to make a concerted, international effort, to begin a data registry--which includes this documentation. And we will need to make a formal presentation of this evidence to the MS Societies and scientific councils who are in charge of research funding. I would like them to meet Jeff, see his MRI and assess him.
At the NCS Sherbrooke conference, which was not attended by any of the invited MS Societies or MS specialists, Sean Sethi from MR Innovations presented many clear MRV examples of the difference between stenotic jugular veins in people with MS and the open and flowing images of normal jugular veins. The visuals were striking.
His comment was that he wants this evidence to “be the hammer that takes the nail out of the CCSVI coffin.”
It is far too early for any organization to be proclaiming CCSVI research as over.
How can any group which purports to be looking after people with multiple sclerosis deny the very clear evidence of venous abnormalities in MS, and the documented improvements in many who have been treated to repair these malformations?
To not pursue this research, to dismiss those who have MRI evidence of disease cessation and healing of brain tissue, is purely evil, and should not be tolerated.
For those who have this evidence, now is the time to get your files in order. This goes beyond YouTube videos and anecdotal reporting. This will be scientifically valid proof.
And we have it.
Joan, this is a brilliant idea. I know that in Canada, it is possible to have a complete copy of your medical records. The way my own family physician explained it to me was that "she owns the paper" in the file, but "I" own the information. Therefore, for the modest price of a photocopy, I can obtain my records. Most of the time if I only ask for a page or two at a time, I am not charged the photocopy fee.ReplyDelete
Keeping proof of improvements is important. Also, it is important to document inconsistencies between what is said and what is written down. I always take my wife to appointments with my neurologist and we write down what was said right after. We date and log everything.
thanks for the information, Christopher! Glad you are documenting your journey. For those with SPMS making improvements in EDSS after venoplasty and rehab, this kind of documentation is important. We've been able to get copies of all of Jeff's labs and MRIs, no problem or questions. I hope others will be gathering their medical records as well!Delete