Treatment for CCSVI Gave Me the Help that No Neurologist Ever Could!

When I was diagnosed in August, 1990 with Relapsing/Remitting Multiple Sclerosis and at that time there were no treatments available. I had several bad “attacks” involving extreme difficulty with any kind
of movement and 10 months of double vision–along with several other “weird” symptoms and a spastic bladder.

By the time Betaseron was approved, I was considered “Secondary/Progressive” and, therefore, didn’t qualify since it was only acceptable for “Relapsing/Remitting” which is the same for all subsequently approved drug treatments. There was still absolutely no treatment available for me.

In November, 2009, I was told to watch W5 because they were doing a story about something that might help MS. I was skeptical because I’ve heard about “miracle cures” before that turned out to be useless. But when I started watching the show I quickly yelled to my husband to come and watch because “this was different”. The theory of CCSVI made so much sense.

When I mentioned this theory to my neurologist at the end of February, 2010, I thought he would be excited and would want to get me tested right away because there was no other treatment for me–but he advised that more study was required. When I asked my general practitioner for a referral to a vascular specialist, she advised that no one in Canada is doing vascular testing for this. I later found out that meant no testing or treatment for people with MS. This kind of testing and treatment is done regularly for dialysis patients and others but not for me because I’ve been labeled with MS.

I got tired of waiting for treatment to be available in Canada and went to Seattle on March 17, 2011 for a venogram at Vascular Access Centers.

It was easier than my latest trip to the dentist for fillings! The fabulous Interventional Radiologist found 50% blockage in my azygos and both jugulars were 90% blocked. Everything was ballooned, which I must admit hurt a bit–but only for a few seconds–and no stents required.

Over the next few days there was no doubt that my balance had improved and my drop-foot was dramatically better. I was thrilled with my mobility improvements and promptly had my husband make a video to show off that I could stand without hanging onto anything and could walk without a mobility aid—not very far for healthy people but a monumental distance for me!

It has now been more than 6 months since my treatment and we made another video to talk about some of the improvements that aren’t “visible”—heat intolerance gone, no more weekly headaches, no dizziness/nausea with head movements, and much better emotional stability!

I also wanted to express my gratitude in the video that even though not all of my symptoms have improved and I am still “disabled”, I am lucky to have obtained many improvements that have made my quality of life so much better. I can once again carry a cup of tea without spilling it!
I just wish that everybody that wants to could have the opportunity for this treatment–hope is supposed to be a good thing!

~Lori Batchelor

14 Comments:

  1. That is a good indication that there is an effective treatment that really help improve the overall condition of those patients who are suffering from Multiple Sclerosis. And it is also a good sign that there is still hope.

  2. For me, the only single help that I can do is care and support. this is actually the most effective treatment. This might not be a treatment for any health problems but still, this is more powerful inside. I hope this can help you to cope with your situation right now.

    • Julie,
      Thanks for saying so! I know that Lori and the rest of us with MS feel the support you kind people give us all! I know that MS is not the only (or the worst) problem that people have, no matter, compassion is helpful for us all!
      Linda

  3. Don’t worry Linda I know there is always a reason for everything. Having MS might be very difficult but if your family and friends are there for you, that is the best treatment that you will every receive and it is priceless and more powerful as well.

    • Julie,
      I couldn’t agree with you more but the spotlight was on Lori! She’s the lady you’re talking too! I’m going to tell her you commented on her spotlight and she can answer you herself!
      Linda

    • Julie, I’m sorry, but you seem to have missed the point I am trying to make. I won’t deny that support from family and friends is extremely valuable at all times but when you have an illness that rips away your abilities, you want as much support as possible from your doctor. In my case, my neurologist could provide no treatment whatsoever and when the possibility of a treatment came along he discouraged it. I thought doctors would want to help me but this is not the case with neurologists in Canada.

  4. You are an inspiration. I am 69 and was diagnosed with PP MS after first being told my symptoms were just old age setting in.

    • Jim,
      I’m sorry from the bottom of my heart! Sometimes the final diagnosis can be a relief, but to live with MS is never a relief!
      Linda

  5. Hi Lori
    Thank you (and your husband) for the story and accompanied videos, this is the second positive story I have found today, (Christopher being the first), I am gaining confidence in CCSVI by the minute. The WWW certainly helps us mere mortals with MS circumnavigate the so called help that is out there for us. I hope to obtain a successful Liberation in 2012! I just need to locate the closest place for the procedure; the closest is Scotland but is it the best? They are new to the game so I will look for feedback in the New Year.
    Long may your improvements continue!
    Andy

  6. I salute you Linda with this one. I’ve learned something new about this thanks for sharing I will tell this to my friends..

  7. Hi Lori!
    Wow… what an amazing story! I’ve read pros and cons but haven’t really seen the actual results… you look wonderful and it is easy to see how much you have improved. I only wish that the neuro’s would get on board more with some of these treatments that are not in their typical regimen. Sometimes I get rather cynical and have to wonder if it’s all about the money. I mean, there is certainly more in keeping us ill than getting us well….

    Keep on truckin!!

  8. I pay a visit day-to-day a few blogs and sites to read posts, however this web site provides feature based posts.

  9. Your story is truly an inspiration… That you for sharing!

    • Damiso,
      I think the entire CCSVI treatment is amazing! If documentation would have been taken from the start I think it wouldn’t have seemed like such a scandal!
      Linda

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