It can be hard to hear of other people's improvements if you are one of the 1/3 that didn't see any changes after treatment, especially when standard therapies did not help either.
There are many potential reasons for treatment to fail even if CCSVI is an important part of MS: maybe the interventional doctor missed something, or your particular kind of stenosis isn't well repaired with today's techniques, or the area may have been undertreated.
Aside from the issues of treatment failure due to technical difficulties is the possibility that blood flow issues are only a part of MS, or only significant in a subset pwMS. These things will be elucidated with time and research.
But there is also the fact that decades of research on brain tissue from pwMS has shown permanent nerve damage that occurs even early in the disease. Although logically a procedure that can restore blood flow offers the best chance for healing, many will need something more than just improved circulation to see any change in functional levels.
But I'd like to offer encouragement: we are at the cusp of big changes in MS treatments. One day soon we'll have a better understanding of how much of what we think of as MS is caused by vascular problems, which procedures are effective, which pharmaceuticals can help maintain tissue health in the face of poor circulation (even when a particular person has blood flow problems that can't be fixed with a procedure) and which patients benefit most from a procedure.
However the future for MS isn't only about CCSVI it is also about the rapidly growing field of regenerative medicine.
As mentioned before in these pages, Dr Petrov is researching the use of autologous stem cell transplants along with CCSVI treatment. In his mind good blood flow accompanied by regenerative stem cells is the future of MS treatment. But many other centers around the world are also successfully investigating stem cells as a stand alone MS treatment to regenerate brain cells and tissue.
Dr Mark Freedman has been working on stem cell research in MS patients for many years. His frustration that research funds were diverted to CCSVI has been mentioned by many CCSVI followers because the comments were so derisive of the vascular model, but his work on stem cells offers real hope for people who have already lost function. Though much of Dr Freedman's research has been on stem cells after a strong chemotherapy drug kills the entire immune system (I talk about the problems with this type of therapy in my book), he is also researching stem cells as a regenerative strategy without the chemo.
There are also several companies making drugs to stimulate stem cells inside the body to repair damaged nerves after a stroke or other neurologic diseases. One of these therapies uses a hormone and a red blood cell stimulator and it seems to help stroke victims recover more function. They are already at stage II/III trials with stroke patients and expect their drug to be available soon.
The regeneration of damaged nerves using these strategies is almost here.
But if you have money and live in or near Texas, it is here--Texas passed a bill that allows private clinics to use stem cells for degenerative diseases even though the FDA hasn't approved the use of stem cells in these diseases yet.
The reason the FDA has not approved stem cells for things like MS or Rheumatoid Arthritis (RA) is that although stem cells are commonly used in cancer therapy, there have not been an adequate number of stage III trials showing how effective they may be in slowing or stopping other diseases for the FDA to pass an approval. See an article about Texas and their controversial law click here
The Texas law demands that any clinic doing these unproven stem cell transplants must have IRB approval to protect patients from false expectations or misleading advertising and it insists that the clinics keep data on treated people and effectiveness of therapy for the various diseases treated. This will result in a huge amount of data regarding the usefulness of these therapies in short order. Go Texas!
Another regenerative therapy is stimulating nerve growth through physical therapy; Dr Wahls is running a study to evaluate aggressive physical therapy and diet changes to help progressive MS. A progressive herself, she went from 4 years in a wheelchair to being able to bike to work and walk the halls of her hospital. She details her program in the book "Minding My Mitochondria".
The brain is actually very "plastic" meaning it can reorganize and rewire itself. This is how aggressive physical therapy helps people reagain some lost function. In an extreme example children with severe epilepsy have sometimes had one HALF of their brain removed to stop the seizures. Such children recover nearly all of the lost functions if they have the surgery when young enough and train enough.
The book "The Brain that Changes Itself" is a fantastic read about how aggressive physical therapy can cause the brain to rewire from damaged areas to intact ones so function is restored. One thing mentioned is that a blind person's brain rewires itself so his ears also employ the eye's unused nerve cells making the ears far more sensitive and capable that ordinary sighted people.
Some combination of these things may be helpful for progressive MS patients who did not see benefit from a CCSVI procedure, or people who got less than they hoped for: physical therapy, stem cells, and if blood flow was poor but not repairable possibly medication to enhance circulation or to make tissue resistant to low oxygen states. Altogether this may allow the brain to maintain function better.
But the slow pace of investigtion can be frustrating especially if you have lost a lot of function even while on standard treatments. It can feel like nothing may get here in time for you...I get emails from people who feel like the nursing home is only a few years away, and they want to know--If I don't get this now or if it didn't work when I tried it, can you share reason to hope?
I'd like to share a bit of myself and an epiphany I had a couple years ago.
In August of 2008 after 17 years of MS, I fell and shattered the ball part of my arm bone in my shoulder joint. The break was so bad it could not be repaired; all they could do was tie my arm down and let the pieces heal into a blob in there to hopefully imitate the old ball. Oh wow, did it hurt! I couldn't walk with my cane, couldn't shower, couldn't drive; in short, I became completely dependent. I felt utterly helpless.
On top of that dependency, I felt quite hopeless because suppressing my immune system had not prevented my MS from progressing to the point where I was heavily dependent on a cane or walker. I was convinced the autoimmune model was missing something. I could jog when I went on Copaxone--I never had a relapse or MRI-visible inflammation after starting it AND my arthritis was controlled. When my MS progressed anyway they added methotrexate to try and suppress "invisible inflammation". It didn't work -in fact it made me worse- and the slow but relentless slide continued. I stayed with Copaxone because it works so well for my arthritis, but I've never thought it did much to stop MS progression.
I didn't think anything would change about MS in my lifetime; I cynically figured the day after I died there'd be an announcement about some mouse's immune cell and how the researcher who discovered it thought this would cure MS. Little did I know as I despaired that something would force many researchers to look at MS with a completely different perspective in just a couple months.
I didn't know that Dr. Zamboni's work would come out in December. I didn't know MS patient grassroots activism and advocacy would cause a complete uproar in the medical community. I didn't know the Cleveland Clinic would advance a study that showed severe abnormalities in the veins of 7 MS patients in autopsy because of that uproar. I didn't know that in 3 years several hundred studies would be out looking at this new idea and that other related ideas would be investigated like CPn as a vascular operator in MS or BNAC's work on cerebrospinal fluid flow. I didn't know that all of these studies would lead to more studies in an ever widening net to capture and learn the truth.
I had no premonition of the promise so close... I didn't know there was so much reason to hope just beyond my sight.
While CCSVI treatment has not changed my MS much beyond a very welcome reduction in spasticity, I have great hope because there are suddenly many new directions of research. CCSVI has REALLY shaken up the research community and resulted in many new ideas.
I don't know what might happen next month or the end of this year, but I do know it is vastly more hopeful than it was 3 years ago when all we heard about was endless "breakthroughs" concerning some different immune cell that some dude somewhere "thinks will cure MS."
Please be hopeful and know that science can be very surprising; I'm ready for venous researchers to start talking about their breakthroughs but the cool thing is that even if the venous aspect of MS turns out to be only part of the story, there are really different avenues of nerve regeneration coming soon. Things are really changing and this isn't the same old recycled ideas.
Pump up the veins and pass the stem cells!
Marie
http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/when-treatment-doesnt-help-thoughts-from-marie/10150756949697211