Another CCSVI Victory

[Jugular]

Thank-you everyone for your kind replies!!!

I'll try to answer your questions as best I can.

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..?

I don't know how or if my procedure was different than Rici's. But I can say that I look forward to laying down now as after each such rest I seem to be getting a bit better. I'd have to go along with the dream thing too, although that's not scientific. No dizziness or headaches to report. The opposite, really.

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

I don't know the answer to this, but can say that he did at least 3 before mine as 2 I met in the waiting room were having the procedure done on Saturday and the 3rd was actually staying at my hotel. I talked to him the day after his procedure and already he was having remarkable improvements. So did his friend previously who was out of her wheelchair and using a walker after one week.

On the blood-thinners, I had my wife with me who is a doctor and we came armed with Plavix samples. At least in my case Dr. Arata said the risks outweighed the benefits. I believe in being a fully informed patient but ultimately I rely on the advice I'm paying for and I had the highest confidence in Dr. Arata's. I am not sure if the same applies in all cases.

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.

Nunzio, I am very sorry of your short-lived boost. I think it was a 16 mm balloon. I am unsure of the pressure. Dr. Arata said that I would know if I restenosed if my improvements start to disappear. If that happens he advised me to skip an US or MRV and go directly to a venogram and possible retreatment. He said that MRV's are fairly unreliable.

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.

I am very hopeful for Emma! She sounds like someone who could have significant benefits.

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.

Hi Cece, I know you have been focusing a lot on valves so I hope my experience helps validate a lot of what you have been saying. I don't know enough about the method that either Dr. uses to say why blood thinners should or should not be used or why it might have been different in my case. I can tell you that it sure was welcome news to me, especially since I don't have to quit drinking with Christmas and New Year's looming.

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.

The procedure didn't hurt by my standards. To be honest, I don't remember much though due to the date rape type drug I was given. There was nothing significant to complain about after. Actually, my MRV was more painful. On the risks, Dr. Arata said that I should probably not use my inverter board henceforth as I might get too much pressure build up. I think I’ll stay away from amusement park rides too I guess. That's it for risks as they apply to me.

I would like to close by saying that I cannot say enough about the personalism and professionalism of Dr. Arata, his staff, and the nurses and state-of-the-art facilities where the procedure was performed. The only foul-up was with my unisex name which caused the receptionist to tell my wife that I was doing well and that she could see "her" right away. That caused my wife to wonder whether we had accidentally signed me up for the wrong surgery.

Merry Christmas all!

p.s. this note was typed with the assistance of one finger of my right hand. First time in four years!

[Cece]

This makes excellent Christmas news.

For those wondering, Dr. Arata has been treating for many months now. I think since June.

[pairOdime]

The only foul-up was with my unisex name which caused the receptionist to tell my wife that I was doing well and that she could see "her" right away. That caused my wife to wonder whether we had accidentally signed me up for the wrong surgery.

This is a good example of why we must refer to CCSVI Tx as venoplasty. There are apparently other prodedures that might be considered as liberating

Great news....excellent outcome.
Viva La Liberati!!

[CD]

Congratulations Jugular. What an amazing Christmas gift. Good luck to you, and I hope you find more improvements as time goes by.
CD
Happy Holidays

[CureIous]

Thank you so much for your thorough depiction of a very exciting approach, admittedly at first, these valves were by and large ignored (in many centers that were treating people, not all) in favor of the more tantalizing approach of fixing obvious looking pathologies like stenoses directly.

This is something that some of the European centers understood early on, via fluid dynamics, that fixing a downstream valve that is malfunctioning, corrected the stenosis upstream, a bottom up approach, vs. top down.

No, not applicable in all cases, and not everyone is going to have valve issues per se, and not all Dr's are using the IVUS which would seem to be a very good way to identify a pathology, and then to verify what is going on with the valve afterwards, unless of course they have a very good UT setup and know how to use it properly, even then I'm not sure that grade A Zamboni style UT would tell all that needs to be told there. Plus, who knows what the long term effects would be of wholesale detruction of valves across the board? If you have valves in the first place that is and not a funky looking septum like my RIJV, which did nothing but cause misery in the form of venous hum.

The restenosis rate WILL tell the tale. This, if it is effective for even a fraction of the cases, will kill two birds with one stone, relieve the stenosis, AND prevent restenosis, all without stents of course.

A big if, but tantalizing nonetheless...

This also makes me wonder, if constantly treating and retreating the same stenotic area directly, when it is not effective for some, even with stents, is missing the larger picture of the downstream valves completely, and of course, without IVUS, how would they know? IOW, there *may* be further avenues to explore for those who've appeared to exhausted all means?

Thanks for the report, CCSVI is too dynamic as of now to chart a definitive course, but a fresh set of eyes on the problem always seems to add a small measure of improvement as time goes on...

Glad you are doing good, very exciting!

Mark

Edit, per your original post, with Dr. Arata quoting a 1% restenosis rate, I'd prefer to state "long range restenosis" rate in my comment above, 6 months, 1 year etc. Anything below 50% restenosis rate will be incredible in my book, and make a lot of patients very happy not having to go through lots of repeat procedures. With Dr. Arata covering valves, and Dr. Sclafani beating back the stenosis with his ballooning method, there could be a mix of the two that could significantly lessen the re-treats beyond say two procedures.

[Cece]

With Dr. Arata covering valves, and Dr. Sclafani beating back the stenosis with his ballooning method, there could be a mix of the two that could significantly lessen the re-treats beyond say two procedures.

Here is another patient experience with Dr. Arata (through the link that Laura posted) as well as Dr. Sclafani's response.
http://www.thisisms.com/ftopicp-146588.html#146588

Dr. Sclafani,

A friend sent me a post that she read on another site about a doctor in California (?) who has a different approach to unblocking veins. He tears the valves. He claims to have 100% success. None of his patients have experienced re-stenosis.

http://ccsvi-ms.ning.com/profiles/blogs ... california

Do you know this doctor? What do you think of this technique?

Laura

Laura, this is what I am doing as well. the doctor that the person is writing about is treating the annular stenosis at the valve area. From IVUS, it appears that the valve does not completely open. I think we are tearing the annulus of the valve and this results in the valve falling away from the wall of the vein. It looks pretty interesting on IVUS. I will show one soon.
high pressure large balloon therapy was described at my symposium in july by dr tariq sinan (kuwait and Egypt). He is also having good results.

However not all patients respond to treatment like the patient who wrote that blog. great news for her.

[David1949]

Congratulations on your success! I'll pray for your continued improvement.

Like some of the other posters here I have some concern about intentionally tearing the valves. But apparently the benefits outweigh the risks. I wonder if Inclined Bed Therapy might be beneficial. Then gravity would help to keep the blood moving in the right direction, since the valve may no longer be able to do that.

[esta]

Hi Jugular, congratulations!!!!!!!
for all of us, it can only get better

[Jugular]

Thank-you all for your words of encouragement.

By way of update, the gains keep coming. Some are putting me into ten year territory. For instance, to my surprise, it's been more than that long since I've used my right hand to write my appointments. I haven't seen the physiotherapist yet but am working on my exercise routine which now includes walking on my treadmill without my arm hanging limply at my side, without an AFO, and without my electric stimulation device. I still need an AFO for everyday stuff but at least on the treadmill, I am able to pick my leg up enough and not drop my foot so much to get by.

Congratulations on your success! I'll pray for your continued improvement.

Like some of the other posters here I have some concern about intentionally tearing the valves. But apparently the benefits outweigh the risks. I wonder if Inclined Bed Therapy might be beneficial. Then gravity would help to keep the blood moving in the right direction, since the valve may no longer be able to do that.

Thanks Dave! I tried IBT for a few months last year. It did a great job of straightening my spine, but was neutral to negative on my MS. I'd use it if my lack of a few valves negatively affected me when lying flat. I do use a few pillows though and seem to be waking up stronger.

So far, knock on wood, "liberation' has blown way past my expectations, is well into hopes territory, and is knocking on dream's door.

[Cece]

Amazing, Jugular, I love hearing the results like this and am so happy for those fortunate enough to get them.

[Jugular]

7 weeks post procedure and I'm still doing well.

Most of what I have been able to achieve thus far relates to the improved nerve function that I experienced shortly after. This has enabled me to start working on my atrophied muscles with weights etc. The biggest boost has been to my core muscle strength. It feels as though I've moved to another planet where gravity isn't so harsh.

My hand and foot have been stubborn so the gains there haven't moved along much since my last report. Except. Well. Last night I noticed I can now slightly lift my foot off the ground. An insignificant step for a man, a giant leap for yours truly.

My physiotherapist has been pretty impressed with how much better my peak strength has gotten, though things like sustained grip are slow moving. The results speak for themselves. 1 inch of muscle on my lower thigh, 3/8 on my upper arm, 1/2 on my upper wrist and 1/2 on my calve.

My walking is so much better now. With my mild AFO my walk is much more even so that I can carry a coffee without spilling it.

The thing I enjoy the most are my workouts now. I've gone back to weights after 5 years. Unlike before where I was just putting in time and could never improve no matter what I did. These workouts are like the workouts I used to have back before my decline, where you feel strong doing them and can get gains.

One thing I'd like to stress though is to NOT overdo it like I did. Last w/e I was walking with my electric foot up on the treadmill and kept increasing the speed until I got a misfire and ended up badly twisted my ankle. My advice is to work slow and steady and build in lots of recovery time. It takes a long time even with better nerve function to get atrophied muscles back in the game again.

I'm was very concerned about gathering objective measurements throughout this process as there are so many doubters out there. I was pretty doubtful myself until I had the procedure. But here are a few more random things - my planter's (Babinski) reflex in my bad foot is now down going where it had been up for plus 10 years, the amount of current needed to get my foot to Dorsiflex has substantially reduced, and my other previously impaired reflexes are normalizing.

The worst part of this is the fear that I have of restenosis but I'm trying to be more confident. Also it's disheartening to see all the negative backlash to this breakthrough. I wish all these detractors could spend more time in trying to figure out how this might work instead of trying to prove that it doesn't.

[prairiegirl]

Great update, Jugular-- thanks for posting!