CCSVI Treatment - My Experience
Many have studied CCSVI, can see the theory behind it, and feel this could be the beginning of an exciting journey into MS recovery. CCSVI Treatment is a relatively new procedure and as yet, unavailable in the UK. A significant number of MS patients have shown abnormalities in clinical tests, and those treated have shown varying degrees of success
Little is known about MS and until recently, the vascular connection was stored away in old dusty medical archives. To this day, the tunnel visioned autoimmune theory is accepted although unproven. The definitely, probably, maybe theory that has an unknown origin, an unknown trigger, no known cure, and remained a mystery within the medical fraternity, for years.
Clinging to the fading hopes that drug companies will cut their own throats, reduce the need for medical intervention, the same intervention that has been linked to serious side effects. Can the vulnerable rely on a business sector intent on increasing sales? Is patient welfare becoming a poor second to profit?
It was recently reported that a fellow Scotsman traveled to Germany for this ground breaking surgical procedure. I tracked him down and asked him if he could describe his experience as many of you are starting out on this scary, but hopeful journey, into an exciting new chapter in MS history.
I've blindly tried every new therapy that’s come along, and I've had my fingers burnt every time by scams like “Esperanza”. I've been following CCSVI and this time I thought that I could understand some of the theory behind it, so I sent emails to a few clinics around Europe.
I got a reply from a clinic in Germany almost immediately, offering to see me in two weeks! I can still walk a little around the house, but not much more than that, so my wife took me to Germany. I had a scan on 1st March, an MRI, MRV or CT scan, I don’t know what it was, but the result was not what I wanted. Neither of the veins in my neck was blocked. They were both narrowed, but not enough to need treatment. I went home feeling pretty sick about it, but at least all I’d paid was £800 for the scan. I think that was reasonable.
Then on the Sunday night after I got back, I got an email from the doctor, asking if I'd like to return for an “invasive pressure measurement, and if there is a pressure gradient one can try a dilatation”. I’d no idea what that meant, and I’d thought that I was finished in Germany. But maybe I’d misunderstood something, so I returned on Sunday 14th. I went into an operating theatre on Monday 15th, still with no idea of what was going to happen. I’d had to pay in advance for a dilatation, whether or not one was needed, but after I saw the “state of the art” equipment, and the number of staff involved, I’d no complaint.
I had a catheter fitted to my arm so that I could be given pain relief if I needed it.
I couldn't see any of what happened next, but a long tube was inserted into a vein in my groin. I could feel everything that was happening, but it wasn't painful, more uncomfortable. As the tube passed through the veins I had "electric shock" sensations through my head, ears and throat.
After about 20/30 minutes the doctor stopped and told me that he'd found a "stenosis" in a vein behind my ear, and asked if I’d give him permission to perform a "dilatation". I'd already paid for it, so of course I agreed. I could feel something happening inside my head. I know now that it was a balloon being inflated, to widen the vein. It didn't last long, and another 10 minutes or so and I was being taken to a recovery room. No anesthetic, and no pain relief, so it couldn't have been all that bad!
Four hours in the recovery room, then another MRI scan. I spoke to the doctor again briefly, then back to the hotel. There were no stitches, only a compress that I was told to remove after ten hours. All that I have to show for it now is a little mark in my groin, like a mole.
I have nothing but praise for the way that I was treated, and the way everything was done so very efficiently, in a clean modern hospital. There may have been communication problems, but then I don’t speak a word of German, and I was in their country, taking advantage of their excellent health system.
The standard price around Europe seems to be 6,000 euros, less than a year’s supply of “Esperanza”. I paid slightly less, but I also had two trips to Germany. I realize that because my veins weren't’t blocked, it’s less likely that I’ll see any dramatic improvement, but I’ve no regrets about doing it. Now I can only wait and hope for some improvements, as the iron deposits are flushed out.
Thank you Allen, for sharing your experience and put a real face behind MS & CCSVI. Your story will inspire and give the confidence to others who are starting on this roller coaster journey. I understand you'll have mixed feelings on the findings but your positivity shines through in your writing, as does the sense you are finally heading on a road to recovery.
Currently, our government in the UK have yet to raise public awareness of the potential safety concern to the nation. A petition with over 10,000 signatures has been delivered to No.10 Downing Street, London.
Modern MRI Technology can now pinpoint irregularities in an area of the brain, that if damaged, could affect all bodily functions. Screening this area of the brain is crucial, any delay can only harm the patient and slow our understanding of CCSVI and possible link to MS.
Allan, has tried everything to maintain his health. Over the years the MS Treatment industry have flourished yet we got no closer to understanding multiple sclerosis. He is not fighting against MS, he is fighting for his health.
These are problems which can be located and corrected. These problems have been found in an abnormally high number of MS patients. We do not know how widespread this problem is because the is a lack of urgency. Dementia, HIV and a number of other uncurable illnesses have been linked to damage in this area of the brain.
Venous multiple sclerosis hypothesis
Theoretical flow of blood in the veins of the neck and head in CCSVI, showing possible relationship with Dawson fingers
The venous hypothesis has mainly been advocated by researcher Paolo Zamboni, who theorized that the malformed blood vessels caused increased deposition of iron in the brain, which in turn triggers autoimmunity and degeneration of the nerve's myelin sheath (the causes of MS have long been related to autoimmunity, but the cause of the autoimmune reaction itself is not yet known).
According to Zamboni, CCSVI had a high sensitivity and specificity that differentiated healthy individuals from those with multiple sclerosis. The study included progressive variants of MS, but excluded non-standard forms such as Balo concentric sclerosis and diffuse myelinoclastic sclerosis. This has resulted in a theory that CCSVI is present in a subtype of MS patients. A larger study is ongoing at Buffalo Neuroimaging Analysis Center, with a press release claiming preliminary results supporting the link.
Based on the theory, treatments for MS have been proposed and tested on a small group of patients. The Multiple Sclerosis Society of Canada has committed to funding further experimental trials on the hypothesis, though the head of the organization noted the results were promising but preliminary.
A vascular component in MS had been cited previously in immunohistological analysis, including that hemodynamic abnormalities precede sub-cortical gray matter changes in multiple sclerosis, raising the possibility that MS could be a hemodynamic disorder or involve a hemodynamic component. Normal appearing brain tissues (NAWM, NAGM) have been found in MS, in which lesions are expected to appear. They show a primary vascular injury.
CCSVI was first found using extracranial and transcranial doppler sonography Currently MRV for diagnosis is under study
The syndrome, when it is due to stenosis, could be treated by balloon angioplasty and preliminary treatment results in MS patients have been published.
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