(¯`·._. MA SEP, MON ENNEMIE INTIME. ._.·¯)Atteinte d'une SEP (sclérose en plaques) de forme progressive rapide depuis 98, je m'efforce d'apprivoiser mon ennemie intime. Coups de blues, de gueule et éclats de rire!
An Airdrie woman has a new lease on life thanks to a life-changing operation in Mexico.
Gayle Clayton was diagnosed with Multiple Sclerosis 30 years ago and has suffered from debilitating symptoms including excruciating pain, weakness in her left leg and numbness in her hands and feet for at least five years.
“This affected my whole life severely,” she said.
“I had trouble doing what I loved. I couldn’t work in the garden or play with my grandson, I had severe pain and extreme fatigue. My family slowly watched me go downhill and it was very upsetting to them.”
On Aug. 25, Clayton went to Cabo San Lucas to receive Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) surgery.
“It’s scary going to a different country. You don’t know what their medical system is like but it was a great experience and I would recommend it to anyone suffering from MS,” said the 56-year-old mother of two.
As many as 75,000 Canadians have multiple sclerosis. The disease can slowly rob individuals of the ability to do the most basic of physical acts.
The procedure cost about $15,000 but Clayton said it was worth every penny because she felt a difference in her symptoms the minute she woke up in recovery.
“I woke up with no pain in my left leg at all,” she said.
“I had feeling back in my hands and feet and I could even see better out of my left eye. Almost everyday I am discovering that I can do things I couldn’t do before the surgery. I am looking forward to walking and doing all the normal things. I have a new lease on life.”
After the surgery, Clayton is able to raise her left foot, something that hasn’t been possible for 25 years. She can now cross her legs and walk up and down stairs unaided.
Clayton’s sister and Irricana resident Gwen Morris said she sees a remarkable difference in her sibling.
“There are so many things she couldn’t do before that she is having no trouble with now,” said Morris.
“It is amazing to see. We are all so happy for her.”
The surgery is a controversial procedure, known as the liberation treatment, which is not available in Canada. According to Canadian Institutes of Health Research and the MS Society of Canada, the liberation treatment involves an intervention, venous angioplasty, that is potentially dangerous and could lead to stroke and heart complications.
A recent report by the two organizations said “there is little support for the notion that ‘venous insufficiency’ for the brain or spinal cord contributes to the development of MS.”
Federal Health Minister Leona Aglukkaq recently said she intends to follow the recommendations of the report and not devote federal money to clinical trials at this time. However, several provinces, specifically Saskatchewan and Newfoundland and Labrador, have reaffirmed a commitment to fund the clinical work.
“This is being denied to me as a Canadian,” said Clayton, who has lived in Airdrie since 1967.
“There were so many Canadians down there and even another woman from Airdrie. We saw miracles happen down there and it is hard to believe our country is not taking the surgery seriously. They are being ostriches with their heads in the sand.”
Clayton will now undergo months of physiotherapy to rebuild the muscles in her left leg, but she said it is all worth it to be able to play with her grandson.
“The first time I was able to hold him after the surgery, he felt lighter because I was stronger,” she said with tears in her eyes."
If you have had a venogram and angioplasty at The Alfred and have been refused further treatment without your Neurologist referral, please consider joining us who are in the same position by writing to the Ethics Committee and sending a copy to the Minister for Health, Daniel Andrews. You can use my own letter below as a guide (obviously change my story to reflect your own!). Your personal story will show the human side of this issue and also the path you have journeyed so far. Please comment below if you are sending a letter or if you have any questions. Kerri
14th September 2010
The Alfred Hospital
55 Commercial Road
Melbourne Vic 3004
Dear Committee Members,
RE: Refusing further Angioplasty treatment for patients with Multiple Sclerosis and Chronic Cerebrospinal Venous Insufficiency without treating Neurologist referral
My name is Kerri Cassidy and I have Relapsing Remitting Multiple Sclerosis. I was diagnosed in August 2008 however my medical history suggests that I have suffered with MS for over 10 years. Last November I heard about Chronic Cerebrospinal Venous Insufficiency and it sparked my immediate interest and I set about finding out everything I could about this theory and the potential for a simple angioplasty to alleviate some of my MS symptoms. I considered the evidence against my own experience, in particular the sloshing sensation I felt behind my left ear and chronic pain which I had behind my ear and into my neck and jaw.
I did ask my Neurologist about this theory in December (whilst suffering a bout of Optic Neuritis) and he said that he had not heard much about it but that he was sceptical. In January I had another relapse, this time requiring a catheter to be inserted into my bladder. I asked my Neurologist again whether he could arrange to have my veins tested for CCSVI and he said that he would consider an MRV when my next MRI was due (October 2010).
It seemed an obvious alternative when I heard that Melbourne Radiology Clinic were performing extra cranial Doppler ultrasounds to test for CCSVI with GP referral. I approached my GP in February who wrote me the referral and quoted the case about stomach ulcers being caused by bacteria and how scientists were ridiculed and then ultimately awarded a Nobel prize. He showed great compassion and said that he was not sure they would find anything but that he really hoped that there was something to be found. I was not surprised to be told mid February that I had two venous abnormalities in my neck, both my jugular valves where inverted and narrowed. The results were sent to my GP and I asked he refer me to a Vein Specialist who could tell me what the ultrasound meant. At this stage my MS diagnosis was irrelevant; I had two impaired jugular veins and wanted to know what impact this was having on my health. I was referred to Professor Thomson, who clearly told me he did not know whether treating the veins would help my MS but that I did have venous abnormalities. He offered to perform a vein angioplasty to further investigate and balloon the stenosed veins if needed. He discussed the risks with my husband and me and we decided to proceed. We felt that the drug I was on for MS (Tysabri – which was not appearing to be working for me after 9 months) was a far greater risk than an angioplasty and the potential benefits of having properly working veins a considerable benefit. Please be aware I continue to take Tysabri at my Neurologist’s advice with the risk of the PML. You are possibly aware that PML is a life threatening brain disease resulting in significant disability or death.
On 11th March I had the Angioplasty with pleasing results. Amongst other things the major improvements were my vision, head fog lifted, heat intolerance and fatigue disappeared over a couple of days. Over the following weeks I had spasticity in my legs disappear (I no longer required a cane to support my walking for distances over 100m like I had), a myoclonic jerk subside (which I had had for over a year) and my bladder/bowel function had improved. I did not go into this believing that any of these things would happen. In fact I did not know anyone else who had yet managed to have the procedure so there was no suggestion in my case regarding what symptoms would improve and the timing of them. As far as placebo goes, it has been almost 6 months and I remain relapse free and my symptoms have improved, I believe, 90-95%. I really hoped that Tysabri would have improved my situation and would have thought if placebo was to play a role I would have felt some benefit when taking it initially. I never have.
One complication, which was flagged to me by Professor Thomson in March, was that veins can sometimes re-narrow. Unfortunately in June I started feeling the neck pain, swoshing sensation again and an odd gurgling feeling in the back left quadrant of my head. An MRV revealed that my veins had indeed renarrowed. This resulted in a second angioplasty on 13th July. Following this I did feel some improvement in that my feet felt warmer and my vision had become clearer again (I had not realised either had regressed before hand).
Now it is September and upon talking to Professor Thomson’s assistant Jan, I have been advised that I can no longer receive follow up from Professor Thomson without my Neurologist’s referral. I have some concerns regarding this:
There are barriers to seeing my Neurologist. My appointments are six-monthly unless I relapse, if I suspect I have narrowing but no relapse I can’t see how I would get an appointment.
I do not believe that my Neurologist would give me a referral, he has been advised the details of my angioplasty and last time we spoke in April he remained sceptical despite my considerable improvements. Let me be clear – I have had 3 conversations with my Neurologist about this treatment I do not have his support.
I understand the need for my Neurologist to monitor my MS symptoms (and I continue to seek advice about treatment) but I do not believe he is the best person to monitor my proven vascular condition.
I believe the decision to refuse further follow up care is discriminatory because I have Multiple Sclerosis. I do not believe I would be refused this care if I had a different condition or no other condition at all.
I believe this decision undermines my right to make decisions about my own health care.
I am concerned that, should I have other vascular problems, they may be overlooked because my Neurologist is not considering them.
I urge you to consider the fact that I have proven venous abnormalities as reason to provide adequate follow up care. At this stage we do not know for sure whether CCSVI is a causative factor in MS, what we do know is that many people with MS have venous abnormalities and it appears that treatment improves our quality of life. I understand the need for clinical trials and welcome the efforts at The Alfred to provide this evidence. In the meantime, however, I would consider that the patients who have been shown to have this condition continue to be monitored simultaneously. I believe the data of those of us already treated would be highly beneficial.
In other countries, such as Italy, Serbia and Kuwait the governments are paying for all people with CCSVI to be treated, whilst the link between CCSVI and MS is proven within the context of clinical trials. Angioplasty for CCSVI is also being performed at St Vincent’s in Sydney when CCSVI has been detected by Doppler ultrasound or MRV. It is also performed on patients at The Alfred without MS. There is no evidence at all to suggest a higher level of risk for MS patients in having the procedure when no stents are involved. It appears that The Alfred is out of step with clinical practice in other major Australian hospitals and jurisdictions. Interventional Radiologists at The Alfred are willing to proceed with a trial.
I request that the Ethics Committee reconsider its decision to discontinue treating MS patients for CCSVI without referral from the treating Neurologist. The ethical issue is why one particular cohort of patients should be denied a treatment available to others presenting with CCSVI, and which is also available to MS patients in other major Australian hospitals and jurisdictions.
I have copied this letter to the Health Minister in the belief that he will be interested in knowing why MS patients in Victoria are being denied a promising treatment option.
I would appreciate your early response to this matter.
*Multiple Sclerosis Society of Canada Chloe Emm More PML infections and deaths due to Tysabri use. Why isn't the MSSC informing its members about this critical information?? Surely with the almost 50% of monies you take off of donations, you can afford to have staff that follow the news on the MS medications in order to keep your members apprised of relevant news?? Ken Torbert This is exactly where this discussion of CCSVI needs to be, where hundreds of suffering MS patients have been brave enough to get their procedures and now they want to share with other suffering MS patients their experience. They want to share with the people they have been walking with, biking with and fundraising wi...th all for the NMSS. Now is the time for NMSS to return the favor and advocate for the treatment of blocked veins!! Chrystal Gomes Just curious. How many of us MSers have been banned from the Alberta MS Society's Main Page?
1. Gord Gier 2. Anna Delorme 3. Chrystal Gomes Ken Torbert All MS patients banned from The Alberta MS Society's main page, there are alternatives CCSVI Calgary To contribute directly to the CCSVI Society of Calgary’s non profit organization and assist us with our fundraising, deposits are accepted at any Scotiabank under CCSVI Calgary. Just let the teller know Ken Torbert Alberta MSSoC has banned discussion of CCSVI on their main page. The only good news that has come along in years, yet they want it banned. The national should do something about this and according to their mission statements open up the discussion on Alberta's page