My husband and I share our experiences with Transverse Myelitis and CCSVI (Chronic Cerebrospinal Venous Insufficiency)

August 2, 2010 at 3:24am
The perspective of Adam, Rox’s husband
When my wife was diagnosed with Transverse Myelitis I felt useless; unequipped to provide her with the support and guidance that she so desperately required, and that doctors were not providing. TM did change her life overnight. Rox had always been very active, self-motivated and driven. TM suddenly put a break on all that, depriving her of her energy, focus and enthusiasm. The constant fatigue made even the simplest, everyday things like getting out of bed, and walking to the corner store a struggle.

The words of the doctors provided very little comfort. We were told initially that improvements (if any) in her condition were possible up to two years after the onset of TM, but most improvements were likely to occur within the first six months. Yet here we were 14 months down the line, with little evident improvement and that 2-year ‘deadline’ bearing heavy on our conscious. All I could do was tell Rox (and myself) that there was still hope, thinking that few things are as exact in life and that we could perhaps still look forward to improvements. Our lives were consumed entirely by TM. We had long-stopped making plans, and took every day as it came, given our uncertainty: Would the condition improve? Would the condition actually worsen? Could the TM develop into MS? How does one plan for any of these?

It was all down to Rox’s stubborn determination, despite the fatigue and depression, to unearth the causes of her TM and search for new leads that she came across the research into CCSVI, and Zamboni’s ‘Liberation Treatment’. Could this have been the answer that we were looking for? We both started to feel that we had been given the permission to hope for a better tomorrow. I wanted to be as supportive as possible, but at the same time I felt compelled to protect her from raising her hopes too high in order to prevent a crushing disappointment in case the ‘Liberation Treatment’ proved of no help to her. At the time there had been no record of TM patients undergoing this treatment. My first priority was to understand the risks, knowing that I had to play the “devil’s advocate” to ensure that our desperation for a solution would not draw us to taking unjustified risks with Rox’s future health and well-being.

We found a doctor that had performed the balloon angioplasty on MS patients, who explained clearly the steps involved, and the risks of the procedure from a vascular point of view, but also that the long-term neurological effects were unknown, given that the application of this method in relation to neurological dysfunctions was very recent. We were told that vascular issues were known to be related somehow to neurological symptoms, even though these links were not yet perfectly understood, and that there were no guarantees that the procedure would actually help with Rox’s TM even if a stenosis in her veins was found and rectified. At this stage, we tried to separate the vascular and neurological issues in our minds, thinking that if there was also an underlying vascular malfunction affecting Rox, it would probably be prudent to treat irrespective of its potential link to TM. We therefore proceeded with the diagnosis, and the subsequent treatment given the significant stenoses that were found.

A few hours after the treatment the sensitivity in Rox’s left wrist subsided and unexpectedly she pointed to an improvement in her breathing. I tried to control my excitement, knowing that we would probably have to be patient before we saw an improvement in the symptoms that impacted mostly her everyday life; the migraines, fatigue and painful spasms. It is now 4 months since Rox had the liberation treatment and our lives have just about returned to normal. TM is still part of our everyday life, but Rox’s energy has returned and the spasms have largely subsided, her enthusiasm has rebounded and we now dare to hope for further improvement. We feel entitled again to look further than one day ahead, and make plans for the future. To anyone questioning the benefits of treating CCSVI, I could in our case just point to the above facts that speak for themselves.

Rox’s story
How Transverse Myelitis visited our lives

Life had treated me well. I had just married a wonderful man. I had a fantastic job and colleagues. Everyone in my family was doing well. Was that a dream?

On the first Saturday of December 2008 I woke up with an immense pain in my left arm and pins and needles in the left side my body and all the way down the shoulders. I was rushed to hospital immediately. The doctors were puzzled. It did not look like a stroke or MS. I was told to wait a few days as I might have pinched a nerve.

The following day I woke up with unbearable pain in both arms. The pins and needles had already spread to the right side of my body. So I was rushed in an ambulance yet again to emergencies. There were three doctors around me looking puzzled. They had no idea what it was. They thought it was not serious though and told me to talk to my GP the following day for her to refer me to a neurologist.

My GP laughed at my request, could I see a neurologist some time this week? She said that the waiting list in my area to see a neurologist was at least six months. Then I remembered one of my wedding presents. An extensive private health insurance coverage. So through the insurance my husband arranged to see one of the best neurologists around. He could only see me in 10 days time given his tight agenda. We phoned several hospitals and that was the earliest any neurologist could see me.

Diagnosed with Transverse Myelitis, now what?
This bright neurologist told me I think you have Transverse Myelitis (TM). It is not acute, it has probably reached already its peak and it is such a shame you were not treated immediately with steroids in your first visit to a hospital. He ordered an urgent MRI (brain and spinal cord with contrast), spinal tap, evoked (visual) potentials, aquaporine-4, ANA antibodies and a long list of blood tests to try to establish the cause of TM or whether there was something else that could mimic TM.

All tests confirmed Transverse Myelitis, an inflammatory demyelination of the spinal cord which had affected me at the c3-c5 level. My brain was clear, I had no o-bands, the evoked potential tests were normal. The other tests could not determine the cause of TM but it was clear there was inflammation going on, likely to be caused by a virus I got weeks before in one of my trips to Africa. I also had some of my liver enzymes elevated, especially the serum Gamma GT that was at 200, when the normal range up is to 50.

Three weeks later the pins and needles that I had 24 hours a day disappeared, as did the pain in my right arm. I remained with hypersensitivity in my left arm and something nastier appeared: tonic spasms. This is a sort of electricity building up through the hands, arms, trunk and legs that felt like an electroshock that would last for about a minute. The spasms were triggered by movement and I would have at the very least 200 spasms per day. That prevented me from doing any sort of daily activity that involved movement. I also developed a “l’hermitte” neck, which feels like a sort of electricity along the spinal cord when I bended my neck. In addition to that I had chronic fatigue. There were days I did not have energy at all to get up from bed.

I was put on a strong doses of steroids and anti-seizure medication to control spasms. More tests were carried out. I had a liver biopsy, CT scans and another long list of blood tests to rule out other viruses, autoimmune diseases, tumors and other rare conditions. The tests revealed nothing. Then I developed unbelievable strong migraines on the left side of my head. This was thought not to be related to TM or medication. My doctors tried putting me on different medication to control the spasms and pain but still the headaches did not go away.

Was Transverse Myelitis here to stay?
Fourteen months had passed by. During that time I had been pretty much house-bound. My symptoms were stuck. I could not walk at a fast speed because that would trigger spasms. Running was certainly out of the question. I would walk three quick steps and the spasms were triggered in the rest of my body. The spasms were so strong that I would lose control of my arms and my legs will get paralyzed.

My headaches became worse, especially when lying down. I had a third MRI scan (brain and spinal cord with contrast) which showed I had no new lesions and no deterioration in my old one. So my ongoing symptoms were attributed to be residuals of TM. Based on my neurologist’s report my GP told me to come to terms with my condition, as further improvements seemed to be unlikely.

I was very sad that my life changed so much over night. I was about to take the advice of my GP, but something inside me told me not to give up. I started reading widely medical journals and health news about ongoing research in Transverse Myelitis and other closely related diseases such as Multiple Sclerosis (MS). I found lots of information about stem-cell, as well as remyelination research programmes. But these therapies seemed to be in very early stages and not readily available.

CCSVI and the Liberation Treatment
During my daily search into medical therapies I came across the work of Professor Zamboni. He had discovered a congenital vascular disease which he labeled as Chronic Cerebro-Spinal Venous Insufficiency (CCSVI). People with CCSVI have their veins in the neck and/or chest narrowed (stenosed), twisted, or blocked which affects the drainage of the brain and spinal cord. In December 2009 CCSVI was recognized as a new type of truncular vascular condition by experts of 47 countries in the international union of phlebology. Further research suggests that people who have Multiple Sclerosis are very likely to also have CCSVI. Research by the University of Buffalo have also found CCSVI in about 25% of healthy individuals and about 40% of those with neurologic diseases.

A small-pilot study by Professor Zamboni revealed that treating CCSVI with a balloon angioplasty (a treatment also known as the liberation treatment) seemed to cut the chances of relapses and relieve some of the symptoms of MS patients, including headaches, fatigue and spasms. Exactly the same symptoms that had tormented me, so I became interested in finding out more. Was it possible that I suffered from this vascular disease?

I read all peer-reviewed journal publications to date on CCSVI. Since I’m not a medical doctor to judge whether this promising research venue could be relevant for my condition we asked for the advice of a family friend, who happens to be a neurologist and director of a big hospital specialized in MS. This neurologist told us that the research on CCSVI seems to be a promising therapy for those with MS and CCSVI, but it is still at early stages to be recommended outside of a clinical trial. Furthermore, no research had been conducted directly on CCSVI and TM so this friend was not sure whether this therapy could help me at all. I was advised to talk to a very experienced vascular doctor (who had already treated several MS patients for CCSVI) to enquire further about CCSVI, how it is tested and treated and most importantly about the risks involved.

Do I have CCSVI?
My family and I spoke to this experienced vascular surgeon. After we assessed the risks involved of the various types of tests for diagnosing CCSVI, I opted to have a venography. This test revealed that my azygous vein, a vein that drains the spinal cord, was 100% blocked. My left internal jugular vein was narrowed (stenosed) more than 90%. So I was diagnosed with CCSVI.

My vascular surgeon suggested to treat these veins with a balloon angioplasty, regardless of whether that would have an impact on my neurological condition. I had the balloon angioplasty in March 2010.

My road to recovery
Immediately after my balloon angioplasty I felt a difference. The daily migraines that had tormented me for months stopped. I noticed a big difference in breathing. I never felt my breathing so good (not that I knew I had problem with it).

A few days after the angioplasty I asked my neurologists to have a further look at my medical file since CCSVI seems to be strongly correlated to MS. According to their assessment there is no indication at all to suggest I have MS. Furthermore, I was told that my chances of developing MS were low as I don’t have lesions in my brain, nor o-bands and because I was born and raised near the equator and no-one in my family has ever suffered from MS.

A second opinion
My improvements after the angioplasty have continued. My chronic fatigue faded away within weeks. My spasms practically disappeared two months afterwards. I stopped taking anti-spasm medications three months after the angioplasty. The pain I had in my left arm had decreased considerably.

I started to feel almost completely recovered. However, I was still puzzled as to why a TM patient like me might have CCSVI. So I sent copies of my medical file to two vascular surgeons and neurologists who have not been involved in my case before for a second opinion. These doctors concurred with the diagnosis. I’m a patient who happens to have two rare conditions, TM and CCSVI. The good news, is that after treating CCSVI, many of the symptoms that tormented and that had me house-bound disappeared. I hope that this stays this way.

For further information on CCSVI you can see (http://ccsvialliance.org).