Another CCSVI Victory

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Another CCSVI Victory

Postby Jugular » Thu Dec 23, 2010 10:15 pm

After quite a bit of trepidation, I had my CCSVI treated recently. The procedure was performed by Dr. Arata at Pacific Interventionists. It was very illuminating to have Dr. Arata explain his approach. This is me explaining what he told me so don't be upset if I don't explain it perfectly.

The way I understand it, his method can best be described as a modified Kuwaiti method where the focus is on valves, specifically malformed or malfunctioning valves, rather than ballooning stenoses. According to Dr. Arata, fixing the valves usually fixes the stenosis. And a stenosis can usually be related to a bad valve. By this method, the valve is stretched open until it more or less snaps open. And stays open. Once that happens blood flow tends to return to normal and the stenosis goes away.

In fact, he reports that since they started to use this method in July their restenosis rate has been a whopping 1%.

To him, this should be a long-lasting fix as the valves are pretty much permanently snapped open. Ironically, these are the very same valves that are designed to prevent back flow. This was an important design feature, back when we used to walk on all fours. It probably shouldn't be considered if you are thinking about a career as an astronaut, an acrobat, a fighter pilot, or a yoga master. Since, I've had it performed, I guess I'll have to avoid falling head over heals in love as well, but these occupations were unchosen for me long before I was diagnosed with MS.

The advantage of this method,on the other hand, at least in my case, was no need for blood thinners and no special stay on your back instructions.

In my case, Dr. Arata was sure my valve malformations were congenital. In any case when he went in, my right valve wasn't as bad as he thought but he treated it and ballooned the vein. That restored normal flow to the IJV and was no longer flowing down collateral veins. He found a major problem with my azygous valve as it was way too thick and was causing the blood to flow backwards. Normal flow was restored.

So how did it affect my MS symptoms? First of all, I would like to submit myself as an ideal MS patient to gauge these results. My MS started with an episode of optic neuritis over 20 years ago followed by an episode of skin numbness. I thought I had this MS thing mostly licked until I fell while going on a spring run over 12 years ago. The next two years were a rapid slide, followed by a slow deterioration from which you could draw a straight line to when I was treated. My problems are almost exclusively on my right side, with severe foot drop, pretty much useless right hand and weak muscles all down my right side. I've used various types of AFO's for over 10 years.

I am my own control group I guess.

The other part is that, though I've had awful MS depression in the past, I've been upbeat and energetic in spite of my MS. So placebo is not likely to factor and the things I couldn't do, I consistently couldn't do in spite of all the things I've tried.

The other unique aspect of my MS is that I was VERY fortunate not to be plagued with cog fog, mental or physical fatigue or muscle spasticity. My career continued unabated and I tried to stay as active as my weaknesses would allow. In fact I had to work weekends and 14 hour days in a high pressure job in the month leading up to my treatment. I also was able to ride my bike in the MS bike tour three years in a row and made the full 65 km even though at the end, my right leg was pretty much a passenger. I am proud of these accomplishments and was very leery of risking anything to upset these good things I had going on.

So what effect would having this procedure have on someone like me, with plenty of accumulated stubborn disability, but none of the things have seem to respond well to liberation therapy?

An unmitigated, complete, and huge ....

FRIGGIN SUCCESS that's what.

At first I noticed nothing. I was relieved though that I felt normal and hadn't harmed myself. The things that I could do, lying in bed recovering were within my normal limits.

It wasn't until I got up and about the day after that I started to notice, that getting out of bed was easier, that my arm was stronger and that my knee was much more stable. I could hold things in my hand much more easily. I had filmed myself walking (or my version of it) without my AFO the day before and the day after my procedure. I knew it felt a bit better but the difference on video was stark.

It's only been a few days and I keep gaining. These gains are more to my core and stabilizer muscle strength than fine motor skills, but I am hoping these will come. In spite of my best efforts, I have a lot of muscle wasting in my right muscles.

So far, here are the things that I can do that I definitely was not able to do before:

- can curl my arm without a waggle

- can lift my leg while sitting

- can wiggle my toes

- my foot drop is far less worse and I now use my mildest AFO (not the fixed boot I was using) provides plenty of lift.

- my walking is more square.

- I can use my right hand to help wash my hair.

- I can keep both hands on the steering wheel and steer with my right arm

- I can hold on to a cup of coffee in a paper cup without it feeling like a red hot iron (this was a symptom in my left hand).

- I can drink a beer with my right hand.

Today I went down to the basement to try a few exercises. I could curl twice the weight with my right arm that I could before and many more reps, I could do a pushup much more easily, could use a rower without having to hold the handle in the middle with my right hand. The elliptical trainer felt easier.

But I will have objective measurements done by a third party to report shortly. I went in to run a battery of objective tests right before I left. For now, I would comfortably say that I erased at least four years of decline in four days.

In the meantime it is to me, truly, a Christmas miracle.
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Postby Algis » Thu Dec 23, 2010 10:29 pm

We are very glad of your improvements Jugular :) Keep on and be well; come back often and let us know!
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Postby blossom » Thu Dec 23, 2010 11:31 pm

jugular, that is great news. i'm very happy for you. look forward to more post as you improve more and more. it is something how the methods of treatment are coming along. you are welcoming the new year in right.
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Postby ErikaSlovakia » Fri Dec 24, 2010 1:13 am

Dear Jugular!
CONGRATULATIONS!!!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ikulo » Fri Dec 24, 2010 1:45 am

Congratulations! What a great holiday gift.

One thing I am curious about is whether such toying with a valve can produce the same unwanted effects that plagued Rici. I believe that he had his valve destroyed and it caused him much grief. Was your procedure different than his? I imagine that even such everyday actions as laying down would require the valve to move the blood out of the head..?
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Re: Another CCSVI Victory

Postby pairOdime » Fri Dec 24, 2010 2:43 am

Jugular wrote:So what effect would having this procedure have on someone like me, with plenty of accumulated stubborn disability, but none of the things have seem to respond well to liberation therapy?

An unmitigated, complete, and huge ....

FRIGGIN SUCCESS that's what.


Yeah Jugular...you got the Christmas miracle. The gift that keeps on giving in the best way...Congratulations!!
It's a paradigm shift
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Postby mags4short » Fri Dec 24, 2010 4:50 am

Thanks for the update, wishing you more improvements as you go :)

Mags x
Alone we can do so little, together we can do so much :)
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Postby eric593 » Fri Dec 24, 2010 7:25 am

Congratulations! How many CCSVI procedures has Dr. Arata done? Why no anti-coagulants needed then if he's ballooning/destroying valves?
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Re: Another CCSVI Victory

Postby Nunzio » Fri Dec 24, 2010 7:39 am

Jugular wrote:After quite a bit of trepidation, I had my CCSVI treated recently. The procedure was performed by Dr. Arata at Pacific Interventionists. It was very illuminating to have Dr. Arata explain his approach. This is me explaining what he told me so don't be upset if I don't explain it perfectly.

The way I understand it, his method can best be described as a modified Kuwaiti method where the focus is on valves, specifically malformed or malfunctioning valves, rather than ballooning stenoses. According to Dr. Arata, fixing the valves usually fixes the stenosis. And a stenosis can usually be related to a bad valve. By this method, the valve is stretched open until it more or less snaps open. And stays open. Once that happens blood flow tends to return to normal and the stenosis goes away.

In fact, he reports that since they started to use this method in July their restenosis rate has been a whopping 1%.

Hi Jugular, congratulation on your little miracle.
Your case is almost identical to mine.
I too do not have any Cog Fog or any fatigue syndrome, Just weakness on my left side and I wear an electronic AFO on my left leg for foot drop.
Like you I went in with no hope of immediate improvement but had incredible results on the first day.
The difference is that my symptoms went back to pretreatment status after 3 days.
The reason I believe is that my valve was gently stretched and quick elastic recoil return it to pretreatment status.
Do you now the size and the pressure of the balloon used in your treatment?
Best wishes of continued improvement.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby EJC » Fri Dec 24, 2010 7:46 am

Outstanding results in such a short time, please continue posting updates as medium to long term reviews is now what's important for the naysayers.

Emma is going in on Monday to have the valves taken care of (also diagnosed as congenital), she is similar to you except she has cog fog, severe lethargy and deteriorating eyesight to a point she had to quit driving this year.

Great news for you jugular, 2010 is a Christmas to remember.
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Postby Cece » Fri Dec 24, 2010 7:47 am

A friggin success!!!! So happy to hear this.

What Dr. Arata is describing as breaking or tearing the valves is the same as what we're reading in Dr. Sclafani's thread about breaking the annular stenosis. All the docs are focusing on the valves, although not all of them are using the bigger balloons or higher pressures that get the job done. So the choice to not use anticoagulants is a choice like any other during this discovery period. Dr. Sinan in Kuwait, who also uses the Kuwaiti method, puts his patients on a three-fold combination of Clexane, Plavix and aspirin.
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Postby hope410 » Fri Dec 24, 2010 7:54 am

Did the procedure hurt?

So, these valve aren't needed then? And the Rici risk, I too would like to understand better the risks, whether you are at risk too of reflux without the valve.
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Re: Another CCSVI Victory

Postby prairiegirl » Fri Dec 24, 2010 8:26 am

Jugular wrote:- I can drink a beer with my right hand.


Merry Christmas, and *CHEERS*!
Congrats on the great results!
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Postby CaptBoo » Fri Dec 24, 2010 8:37 am

Congratulations!
<div>There be no dragons   ...Reese Palley</div>
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Postby Blaze » Fri Dec 24, 2010 9:59 am

Fascinating information. Thanks so much for posting.

My 26 year history with MS is very similar to yours. One big difference is my fatigue is an ongoing struggle. No cog fog, though.

It's great to learn from the experiences of others as we consider our own decisions. Thank you being willing to share so many details.

And, most of all, a very Merry Christmas and a happy--and healthy--2011!
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