Open letter to Dr. Anthony Traboulsee
Dr Traboulsee,
I am writing to you with my concerns with the BC CCSVI Registry.What does the UBC Multiple Sclerosis Clinic expect to learn from this registry?
This survey states that my wife will have four interviews by phone, the initial and then one at 6 months, 12 months and finally at 2 years. Jenny was treated September the 14th 2010 it has been almost two years already. How can you get any real facts without having the initial MRV that Jenny had done through the Hubbard Foundation or without any follow up scans? I will offer you a digital copy of Jenny’s initial MRV and the one the day after her procedure. I can also supply the digital copy of her venous angioplasty procedure.
I feel that this study will end up relaying the same answers as the Newfoundland Observational Study produced. This simple procedure could have been preformed and tested in Canada two years ago. We know of at least 6 procedures that were preformed in Canada when the news about CCSVI first came out. We also know that there were no complications and it has been an excepted and safe procedure for many years unless you have an MS diagnosis. It is also known that the procedure was stopped very quickly by the Collage of Physicians when it became known that MS patients were being treated. Who do you think complained to the Collage? Do you understand why there is a lack of trust between MS patients and their Neurologists?
The love of my life was diagnosed 24 years ago when Jenny was just 16 years old. Jenny’s MS did not start affecting her in a noticeable way until she was about 25 years old. At the age of 28 Jenny started Rebif and was having steroid treatments. Jenny was 29 years old and we became pregnant. Her neurologist at the time said pregnancy seems to halt or slow down the symptoms but he did not know why. Knowing what I know now I have a strong feeling that the increased blood flow from baby helps with poor blood drainage. Jenny stopped her Rebif until our Son was about 6 months old. This is when Jenny’s MS came on with a vengeance and she went from a cane to a powerchair in two years.
At 34 years old Jenny was now on Copaxone and numerous medications for her bladder, spasticity, insomnia and depression. Jenny had basically gone from relapsing remitting to progressive. Jenny tried about 6 treatments of mitoxantrone which helped slow down her rapid progression of symptoms for a couple of years. At 38 years old the love of my life could not get in or out of bed on her own, she was falling every other day. The two years before Jenny’s treatment was very hard on our family. My 11 year old son Noah would have to help his mom out of bed and help her to get dressed in the morning. I was at the point of getting home support as I would sometimes come home from work to find Jenny on the floor unable to get up or her being wedged in between the bathtub and the toilet. Our marriage was not doing well we were both depressed and it had been about two years since there had been any intimacy in our lives.
On September the 14th 2010 just a few days after Jenny’s 40th birthday she had her venous angioplasty procedure in San Diego and in the days and weeks that followed our lives and our love for each other changed dramatically ;) We fell in-love all over again :) One month after the procedure Jenny was getting in and out of bed by herself and started walking on a treadmill. My son did not have to help his mom get dressed or put her shoes on. Jenny started cutting back on her symptom management medications and on October the 30th 2010 I just about got hit by her copaxone needle flying through the air as Jenny yelled ouch #$#%%# that’s it no more.
June the 17th 2012 the only Med Jenny is on is Citalopram at 20mg daily.
Jenny now takes vitamins instead. Omega 3 2000mg, Blueberry 36:1 concentrate 1000 mg, D3 6000 IU, B-12 2500mcg, E 400 IU and Green Tea Extract 400 mg daily.
After years of tearing apart Jenny’s immune system we are making it as strong and healthy as possible. We build our nightly meals around steamed kale, broccoli and roasted garlic. Our family’s diet has changed so much since Jenny’s procedure we are eating for our health not for our stomachs.
I feel that there is a lot more then just treating CCSVI it is the treating Clinic, diet, attitude, exercise, hydration, how the veins respond to treatment and how much demyelination has occurred. All of this plays a major roll in the outcome and the length that the patient’s veins continue to do their part in keeping the brain freshly oxygenated.
I wrote this letter to make it clear that even though my wife still cannot walk without her walker nor win the walker race against the 85 year old man the next street over. Her quality of life has improved 100%. I will not stop advocating for this procedure in Canada as it has given the love of my life back to me. If Jenny ever has another onset we would not hesitate to seek out treatment again. This is the longest Jenny has ever gone without an onset of any old or new symptoms.
At Jenny’s appointment at the MS clinic in February of this year we were told by her neurologist that Jenny was definitely past the placebo point and that there is no reason that we have to keep coming down to see her once a year if Jenny is doing so well. The neurologist told Jenny that she can always book an appointment if any symptoms return or if Jenny worsens in anyway.
I am sorry that CCSVI has cut into your Stem Cell research as I hope it will continue. I feel that treating CCSVI is only one part of the equation and maybe with stem cell treatment myelin will be able to be rebuilt. When it comes to treating MS symptoms it is time to quit attacking the immune system it is just doing the job it was intended to do, protect the brain from a build up of toxins caused by improper blood drainage.
We are all fighting for one thing and that is to end MS. So let’s get on with it.
Sincerely
Lorin Powell husband in-love all over again