Anybody had balloning ONLY and no re-stenosis?

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

Anybody had balloning ONLY and no re-stenosis?

Postby ndwannabe » Mon May 10, 2010 12:03 pm

For any considerable amount of time?

The more I read here, the more it seems that the number of re-stenosee's is more than 50% :(
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Restenosis Rate is Improving

Postby Squeakycat » Wed May 12, 2010 7:34 am

I am in the middle of a move and don't have access to my files, but to begin, in Dr. Zamboni's paper on the first 65 patients, the restenosis rate was 47% so 53% were still patent. As I further recall, he increased the pressures he was using when he had to re-balloon and as of the date of publication, I think he said in the paper or possibly in an interview, that none of those treated a second time has restenosed.

Further, he indicated in the session at the AAN that the restenosis rate had improved compared with the initial group to I think he said 27%. You will need to listen to that session or see if the transcript is available now to verify that number.

In another recent interview at the time of the AAN conference, Dr. Zamboni said that the restenosis rate was down, I think as a result of the use of cutting balloons.

Finally, venoplasty in the azygous veins was 100% patent.
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Postby ndwannabe » Wed May 12, 2010 11:23 am

Thanks!

Though I would still like to hear from personal experiences here, because it seems all that were just ballooned re-stenosed shortly. It might be just my impression though, that is why I wanted somebody with personal experience to chime in.
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Postby Cece » Wed May 12, 2010 1:39 pm

Squeakycat, thank you, that was all new info to me!
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Postby nn98200 » Thu May 13, 2010 2:31 pm

Hello all,

on the topic of restenosis: I had the procedure (just ballooning) on March 10 in Poland and I lost most of my improvements about 15 days later. Now I am even worse than I was before the procedure. Also, it took them 3 times with the balloon in order to fix my left jugular, once for the right which was much less narrowed. All that makes me think I have restenosis, probably of the left jugular.
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Postby Johnson » Thu May 13, 2010 3:44 pm

I wonder what anyone is doing for their vein health to allay restenosis - diet, supplements, etc., and what difference this can make. I remember reading here (cheerleader?) about genetic collagen defects that show up in "MS" people - which leads to in-elastic vasculature. Doc. Sclafani writes of elastic recoil in the veins Eat lots of Jello? C. Q10? Meat and bone gristle?

I am taking anti-fibrotic enzymes (nattokinase, serrapapinase, rutin, bromelain...), Vit. E8 - 1400 IU/day, Vit. D - 10,000=15,000 IU/day, Pycnogenol, fish oil - 5 - 10 grams/day... mostly, it can't hurt, and hopefully helps. Sr. Simka told me to keep taking it all. Now, if I would just quit smoking tobacco...
My name is not really Johnson. MSed up since 1993
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Postby ndwannabe » Thu May 13, 2010 3:55 pm

Johnson wrote:I wonder what anyone is doing for their vein health to allay restenosis - diet, supplements, etc., and what difference this can make. I remember reading here (cheerleader?) about genetic collagen defects that show up in "MS" people - which leads to in-elastic vasculature. Doc. Sclafani writes of elastic recoil in the veins Eat lots of Jello? C. Q10? Meat and bone gristle?

I am taking anti-fibrotic enzymes (nattokinase, serrapapinase, rutin, bromelain...), Vit. E8 - 1400 IU/day, Vit. D - 10,000=15,000 IU/day, Pycnogenol, fish oil - 5 - 10 grams/day... mostly, it can't hurt, and hopefully helps. Sr. Simka told me to keep taking it all. Now, if I would just quit smoking tobacco...


Thank you!

I (for the longest time, not knowing why) would boil me some chicken feet (yes, chicken feet) and would eat the very gelatinous broth that results and whatever I could chew, cartilage and all. My body sometimes tells me what I need. Actually, I take that back - my body ALWAYS tells me what I need, I only listen sometimes
:lol:

As far as other stuff - I should take your example and be more dilligent. I only take 1,000 to 2,000 of Vit D, slack off on fish oil and Pycnogenol.

The anti-fibrotic enzymes are a new discovery for me, will go search for some info on them.

Thanks again!

P.S. Quitting smoking is HARD. I'd been a smoker for 17 years. Interestingly, the onset of my MS happened a couple of months after I quit :?: Also worth mentioning is that it was the MS diagnosis that made me not re-start (as was the rule with other quitting attempts).
Last edited by ndwannabe on Thu May 13, 2010 6:28 pm, edited 1 time in total.
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Postby ndwannabe » Thu May 13, 2010 3:57 pm

nn98200 wrote:Hello all,

on the topic of restenosis: I had the procedure (just ballooning) on March 10 in Poland and I lost most of my improvements about 15 days later. Now I am even worse than I was before the procedure. Also, it took them 3 times with the balloon in order to fix my left jugular, once for the right which was much less narrowed. All that makes me think I have restenosis, probably of the left jugular.


I am so sorry. This is what I am most afraid of 8O Anybody knows if I can request stents?
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Postby kc » Thu May 13, 2010 5:21 pm

ndwannabe

I have wondered the same thing. I already think I will restenose after venoplasty.

I do take massive amounts of vitamins and also take a supplement for vein health. Could it be the vitamin D levels that determine restenosis? I keep going back to the equator fact about ms.

kc
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Postby tzootsi » Thu May 13, 2010 5:25 pm

My wife had ballooning 5 weeks ago in both jugulars. She just went back for a 1 month checkup, everything is still flowing great! Our doctor felt that keeping on Plavix for a month, and then baby aspirin for at least 6 months, is helpful in keeping re-stenosis away.
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Postby Cece » Thu May 13, 2010 5:32 pm

I think restenosis comes from elastic recoil: the vein is used to being stuck a certain way and it goes back to what it's used to. I don't think vein health even helps us here: the healthier the vein, the more likely that it'll retain its elasticity.
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Postby Johnson » Thu May 13, 2010 6:27 pm

Cece wrote:I think restenosis comes from elastic recoil: the vein is used to being stuck a certain way and it goes back to what it's used to. I don't think vein health even helps us here: the healthier the vein, the more likely that it'll retain its elasticity.

Yes, I wondered about that... It confuses me somewhat.

Interestingly (to me), my latest relapse - now almost a year long - came on some 8 months after beginning to work on scar tissue with the mentioned supplementation (well, Vit. E and enzymes), and I wondered if I was in fact scouring away the "protective" lesions, and allowing more iron into the white matter - causing the worsening of symptoms. I stopped for about 6 months, but have recently begun again, as my treatment date nears. (stopping the enzymes has done nothing for the relapse)
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Postby ndwannabe » Thu May 13, 2010 6:30 pm

tzootsi wrote:My wife had ballooning 5 weeks ago in both jugulars. She just went back for a 1 month checkup, everything is still flowing great! Our doctor felt that keeping on Plavix for a month, and then baby aspirin for at least 6 months, is helpful in keeping re-stenosis away.


This is wonderful! Thank you for posting - gives us all hope.

Where did your wife have it done may I ask?
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Zamboni cutting balloon ?

Postby hwebb » Thu May 13, 2010 8:37 pm

squeakycat,

I'm not sure Dr Zamboni recommends the cutting balloon. I think Dr Sclafani has been using it (no stats on restenosis rate yet). If this is in a Zamboni paper, could you please indicate which paper (and include the quote here)?

thanks, hwebb
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Postby tzootsi » Fri May 14, 2010 7:58 am

ndwannabe, check your PM.
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