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  • TM patient gets CCSVI Treatment!

    http://transversemyelitis.net/mystory/rox.php

    This is the first time I've read where a TM patient opted for the Liberation Treatment. It makes me want to get a vein scan as well .. but I have too many other issues at the moment.

    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.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  • #2
    The more I think about it, the more curious I am.

    http://en.wikipedia.org/wiki/Azygos_vein

    I remember having extreme chest pain episodes as a kid .. I remember describing to my mother and my doctor about how I would be busy writing with a pencil at my desk in school (primary grades) and I would have this chest pain that would make me freeze and open my hand so the pencil would roll down the desk. It would last a few seconds and be gone.

    I played like a normal kid - went swimming, was an avid baseball player and was always running around.

    I ended up going to a specialist and my mother never took me back because she didn't like the way this unfamiliar doctor 'fondled' my chest. It went undiagnosed and eventually just went away.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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    • #3
      Clinical studies of CCSVI are getting very mixed results, and I've never heard of the procedure being done for TM - it is not without risks, either. It's something I've considered, too, but not very seriously because the veins tend to re-stenose, and in the US insurance companies are generally unwilling to cover it - it's quite an expensive procedure, especially with travel expenses included - and no one can guarantee that there will be any impact at all on recovery of function.
      MS with cervical and thoracic cord lesions

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      • #4
        There are supposed to be clinical trials starting up in Canada next year on this ... will be interesting to see. Definitely worth my time to bring up to my doctor .. she's mentioned twice about a vascular test for my foot/leg anyway.

        Hard to tell if it's anecdotal evidence, placebo or what.
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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        • #5
          Right, might as well check it out - especially since your doctor already wants you to have the relevant tests. Maybe you could become part of the clinical trials, if she thinks you're a candidate.
          MS with cervical and thoracic cord lesions

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          • #6
            Health complications usually devoid me of any trials - unless they have to do with pressure sores.

            Starting to really question the MS-autoimmune theory now; http://www.wired.com/wiredscience/20...s-twinmystery/
            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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            • #7
              Thank you for that link - very interesting. I, too, question the autoimmune theory of MS. Maybe it will turn out that a host of factors are involved in MS (and TM, too) - as the article says, there must be an environmental trigger.

              I am sorry that you probably wouldn't be a candidate for the CCSVI clinical trials - but if the trials show promise, maybe you could have the liberation treatment done privately. I only know one person who has had it done, a fellow on one of the MS forums, and he says he feels better and has more energy - not much to go on, but then these are early days in the studies.
              MS with cervical and thoracic cord lesions

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              • #8
                And now Parkinsons ...

                http://www.pagepress.org/journals/in...iew/ni.2011.e7

                Parkinson’s disease affects over one million people in the United States. Although there have been remarkable advances in uncovering the pathogenesis of this disabling disorder, the etiology is speculative. Medical treatment and operative procedures provide symptomatic relief only. Compression of the cerebral peduncle of the midbrain by the posterior cerebral artery in a patient with Parkinson’s Disease (Parkinson’s Disease) was noted on magnetic resonance imaging (MRI) scan and at operation in a patient with trigeminal neuralgia. Following the vascular decompression of the trigeminal nerve, the midbrain was decompressed by mobilizing and repositioning the posterior cerebral artery The patient's Parkinson's signs disappeared over a 48-hour period. They returned 18 months later with contralateral peduncle compression. A blinded evaluation of MRI scans of Parkinson's patients and controls was performed. MRI scans in 20 Parkinson's patients and 20 age and sex matched controls were evaluated in blinded fashion looking for the presence and degree of arterial compression of the cerebral peduncle. The MRI study showed that 73.7 percent of Parkinson's Disease patients had visible arterial compression of the cerebral peduncle. This was seen in only 10 percent of control patients (two patients, one of whom subsequently developed Parkinson’s Disease); thus 5 percent. Vascular compression of the cerebral peduncle by the posterior cerebral artery may be associated with Parkinson’s Disease in some patients. Microva*scular decompression of that artery away from the peduncle may be considered for treatment of Parkinson’s Disease in some patients.

                I am really hoping these theories on the physics of the vascular system hold true so I can spit in the face of ... someone.
                Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                Comment


                • #9
                  Originally posted by lynnifer View Post
                  I am really hoping these theories on the physics of the vascular system hold true so I can spit in the face of ... someone.
                  I know what you mean! That's a fascinating abstract.
                  MS with cervical and thoracic cord lesions

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                  • #10
                    Not grim news, exactly, but not very encouraging (for my lifetime, anyway): CCSVI studies inconclusive. More studies needed, time will tell, years from now we'll know more, etc., etc...oh well!
                    MS with cervical and thoracic cord lesions

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                    • #11
                      Does anyone know anyone who has had the liberation procedure done????

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                      • #12
                        I do, but I've recently heard from him and am not convinced that he actually had MS. He was turned down for the clinical trial because his symptoms and test results were atypical, so he paid out-of-pocket to have the procedure done privately. He claims to have no symptoms of any kind now, and he believes he was cured. Time will tell.
                        MS with cervical and thoracic cord lesions

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                        • #13
                          Ugh

                          This is so difficult! I've had MS for 14 years and it is just progressively worse it seems like every month! I see my neurologist and his answer is always the same... "you have MS, this is just the way it is". I'm MISERABLE and there is no help, just get use to it. I'm 34 and this is stealing my life! This CCSVI concept makes sense. I'm starting to feel so desperate and so defeated. There has to be something...anything...THIS IS NOT A LIFE! It's mere existence. Ugh! I'm gonna say it... NO FAIR!

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                          • #14
                            If you can afford it, you could find an interventional radiologist (perhaps through Mayo in Scottsdale) and have the procedure done privately - or you could try to get into a clinical trial.

                            The CCSVI concept does make intuitive sense, but you will have to meet specific criteria before anyone will do the procedure outright or accept you into a trial study. There are two options, either a balloon angioplasty or insertion of a stent. The stent carries a small but obviously worrisome risk of death if the stent moves out of place. The man I wrote about (in my post, above) had the balloon angioplasty, which is much safer than the stent, but the results might not last. Balloon angioplasty is preferred by Dr. Zamboni, who first proposed the theory and performed the procedure on his wife (who has MS).

                            If you can afford it or can get into a trial, there might not be much to lose by trying - especially if you opt for balloon angioplasty. That's the extent of my knowledge, but you can find more information here.
                            MS with cervical and thoracic cord lesions

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                            • #15
                              Bonnette

                              Thank you so much for the info! You are wonderful!

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