This Is MS Multiple Sclerosis Community: Knowledge & Support

Dovechick,

Thanks for the link regarding veins. It was very helpful to read the difference between veins & arteries.
I googled the term "Phlebology + Multiple Sclerosis" and came up with these two web pages.

MicroRNAs Hold Promise For Treating Diseases In Blood Vessels
http://www.medicalnewstoday.com/articles/156448.php

$150,000 Grant To American College Of Phlebology Foundation Announced By Vein Clinics Of America
http://www.medicalnewstoday.com/articles/170257.php

And it got me to thinking that maybe we should add Phlebologist’s to our lists of doctors to contact. Here is the definition.

Phlebology is the medical discipline that involves the diagnosis and treatment of disorders of venous origin. Diagnostic techniques used include the history and physical examination, venous imaging techniques and laboratory evaluation related to venous thromboembolism. The American Medical Association has added phlebology to their list of self-designated practice specialties. A medical specialist in Phlebology is termed a Phlebologist. A related image is called a phlebography.
Lora

Is there an contact address for Dr M Haacke, I have obtained a copy of my wifes recent Mri & I would like to forward it to him. We live in Windsor, on canada. My wife is chronic progressive diag in 1990.

Thankyou Bill

Like yourself we are trying to get the word out here as well. already the media has moved on

http://ccsviresearchtransparency.com/

bohemianbill... Your best bet is to visit Dr Haacke's website and follow his instructions. I think that right now the Canadian sites are waiting for approval from the various ethical review boards. But Dr Haacke says it much more eloquently than I. Go to :

http://www.ms-mri.com

Good luck... and keep coming to TIMS for all the news !

Does anyone know how much this procedure costs, and if there are any doctors performing this? I'm new & am wondering if getting it done in Europe would be less expensive?? I'm not even sure of the preliminary work that needs to be done??

Thank you for your help!

Corrine, How much it costs and who does it depends on where you live. You don't say which part of the world you live in. Whether it is cheaper to go to Europe depends on how much you have to pay to get there.
To find out what is needed in terms of preparation you need to read the stickies (posts that stay on top of the list of post) you could start with this one.
http://www.thisisms.com/ftopict-7374.html

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Are there and studies that are going on with regard to angioplasty or stent use in veins or is that putting the cart in front of the horse?

My understanding is that this type of treatment really hasn't been done much on veins for any other reasons , so there hasn't been the need for interest in this to this point. Have we not done similar procedures on the same veins that pertaint to CCSVI in other medical proceedures?

Mechanically inclined:
I don't think that puts the cart before the horse. I have a personal experience in how long it takes to get a new medical device to market, including how long it takes to develop it, and I think we should have already started developing stents for Jugulars and large Cerebral spinal veins. Whether or not it is related to MS ( and the evidence is pretty strong and getting stronger)) there seems to be a problem in some people and that should give rise to the need. Large vein stents are likely to be different in their details, and we should start developing them last year at the latest After all we have already seen one stent break loose and migrate, which well may not have happened in an artery.

I totally agree with you. I do hope that someone is thinking ahead here. We shouldn't be waiting for the studies that will prove the relationship of CCSVI to MS. If we waite and do this one step at a time it will take 10 years.

Hi,

I've got myself tested for CCSVI after reading so much success about it, but both of my tests came out negative. I'm not sure whether they have been done correctly or not since expertise on this is currently not available here in India.

Is there any way the team here can help with my scan and reports, all the scan and reports are available in the following link.

http://hotfile.com/dl/24000592/d4e0c68/scans.zipx.html

Thanks & Regards

Sunny

met with another vascular surgeon yesterday. He looked at my tests and was very familliar with ccvsi having read article in vascularjournal dec. He said he felt he wasn't educated enough to do it. He also said that if I was his wife he would have the test done were they put the wire with little camera in you so you could see the stenosis narrowing etc better. Interesly he said stents are used in veins all the time it is just a matter of sizing them correctly. He also said one has to be careful in areas where there is alot of movement ie neck/shoulders. I think that is why people are having pain/ movement issues barbara

I need to get all my ducks in a row and all the eggs in a basket (so to speak) before I do the surgery.

The possibility of complications from shoulder nerves getting pinched and bleeding from a blood thinner scares the hell out of me. Why? Because I rely on both arms and shoulders to do anything because my legs are completely unusable. I can barely stand up for 30 seconds once a day while holding onto something. Forget walking. I am unable to stand, so walking does not happen. If I did not have both arms to use as I do now, there is absolutely no way I could even move down the bed to slide onto the commode. Peeing in a diaper in bed doesn't sound like fun to me. I can just see the skin breakdown now.

Bleeding from a blood thinner scares me because I already bruise easily and when I fall I hit something--usually my head, arms or legs or all. Just the other day I smacked myself in the head with a 6 pound laptop and got a goose egg from that and I was in bed already. The last time I fell my legs got mangled. I couldn't even make it to my GP appointment. I couldn't even get in the electric wheelchair, so forget about getting into the tiny car.

So I still am going to get the scans when I get contacted to do so--providing I can get into the electric wheelchair. After that, well...I'm not so sure. If Dr. Dake can't fix the circulation problem in my legs, the whole thing is pointless to me, and I'd rather give up my spot to someone who has more hope than I do. It just makes no sense to me to get the procedure and return home with legs that will never stop having the problems they have now. The only thing I'd see out of it is that I might feel better, but am hindered by legs with a problem. I'm not talking about the inability to walk, I'm talking about the other problems that I have with them. Sure, I might feel great and then the legs drag me down and I'm where I was in the first place. I feel really good occasionally as I am now. us.

It is true...I still am angry at Andrew aka Hoodyup for even suggesting this to me. He will never understand until he is me. No one will. Even Dr. Dake says I probably won't get any better, but I might not get any worse. With odds like that I'd rather stay the way I am and be left alone.

I have "never, ever; no matter what, lose your sense of humor" in my signature, but I feel I am losing it all the way around. When I first joined this forum in Sept. '09, I said I wasn't here to whine. I feel like I'm whining. Sorry about that.

It really boils down to if there are bad side effects to anything or if anything bad can happen, I'm usually the fist one that gets the bad. That's just from prior experience.

So I'm wondering if this procedure would even be worth it to me. Yes, I'm the one that makes the ultimate decision on it, but if you would, imagine you are me and ask yourself the same question. I'd like to know.

Have you thought of trying inclined bed therapy, it won't do you any harm, it does not cost more than a bit of timber, and you can stop it any time you want, although Andrew Fletcher (inventor?) says to begin to feel real benefit you need to do it for at least 6 weeks.
I've not got your problems, I don't have MS, but I do have peripheral neuropathy and High BP. In three weeks of doing this my blood pressure has come down from 145/90 to 120/75 and I can now feel the heat of water when I get in the bath...

You can find information here:
http://www.thisisms.com/ftopic-6755-day ... asc-0.html

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Dovechick:
No. I have not tried IBT. I am not a candidate for that. I can't have my feet on the floor or lie flat for more than 30 seconds or I get excruciating pain in the legs and feet, cry hysterically, get strange other symptoms like extreme weakness, orange vision, and the list goes on. I have yet to hear from anyone with my similar symptoms and problems who have tried IBT and have gotten much better. I have asked Andrew Fletcher to give me emails of MSers that have done IBT with positive results--no answer from him on that one and he never gave me emails. I am not a good guinea pig, so I won't be doing IBT. I don't have high BP. All my doctors have told me not to do it because of my leg problems.

Glad it helped you.

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DX w/ RRMS 2004. Self DX PPMS. I don't sit here feeling sorry for myself; I just sit here. View my Blog--history and current events in my life at
http://boopieupsmsjourney.blogspot.com/

I think it will take 12 to 24 months to sort out the stent problem. There are 500,000 MS patients world wide. So even if the intentions are not allustric, there is sufficient incentive to come up with a viable solution.

Actually,there are ~ 2,500,000 CCSVI/MS patients world wide.

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My name is not really Johnson. MSed up since 1993