Post if CCSVI treatment did NOT work for you

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

Postby silverbirch » Tue Jul 27, 2010 4:04 pm

Farmer wrote:I had the procedure 9th July. Angioplasty in both JV. Nice improvements for 10 days. Two days after I returned to Canada all my old symptoms are back. It looks to me like restenosis, I will get a date for October to go back. I know it worked, so I hope that stents will do the trick.
A while ago I read that somebody thought that the flight back could have something to do with restenosis.


Hi Farmer

Thankyou for the posting - sorry to hear about the restenosis . Joy at the improvements. I can not recall reading flight maybe the cause - but I will look ....
Were you given blood thinners ? and for how long ?
Where did you have procedure ?
How long was your flight after procedure ?

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Postby Farmer » Wed Jul 28, 2010 9:56 am

I am still on blood thinner. Procedure at Ameds and they gave me a new date for check up and possible new procedure for Oct. They responded right away and do their best to accomodate me.
The flight itself was 9 1/2 h.
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Postby silverbirch » Wed Jul 28, 2010 12:08 pm

Farmer wrote:A while ago I read that somebody thought that the flight back could have something to do with restenosis.


Today I read here in the forum (ccsvi) that Dr Scalafini symposium was asked a question about re stenosis and flights on the face of it he did not think flights had anything to do with re stenosis.....

Good luck with the new procedure dates.

Do you get your bloods monitored whilst on thinners?

Try this link
http://www.thisisms.com/ftopict-12966-ccsvi.html
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Last edited by silverbirch on Wed Jul 28, 2010 2:03 pm, edited 1 time in total.
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Postby Cece » Wed Jul 28, 2010 1:24 pm

silverbirch wrote:Today I read here in the forum (ccsvi) that Dr Scalafini symposium was asked a question about re stenosis and flights on the face of it he did not think flights had anything to do with re stenosis.....

Yes, Dr. Siskin said this.

Dr. Sclafani also addressed the question back in March or so, although he was looking more at the safety side of it (would flying be unsafe, particularly considering the ms patient Holly's death last summer) and not the impact flying would have on restenosis. He had no issues with us flying home.
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Postby tzootsi » Wed Jul 28, 2010 6:27 pm

My wife had ballooning of both jugulars, and two weeks later flew across the USA - no problem. Our IR didn't feel flying had any risk of re-stenosis.
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i am posting this here as it also applies to this thread

Postby joanp » Thu Jul 29, 2010 7:58 pm

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Postby DDee » Mon Aug 02, 2010 1:47 pm

One month since CCSVI in NY and no improvement. Initially my left leg seemed better--it would flex/bend at knee more when walking instead of remaining straight like a stick, and we thought the morning after CCSVI that I was walking quicker than the day before. However, think it was just a restful getaway from my two story home. javascript:emoticon(':cry:')

Three veins ballooned (both IJs and the azygos)-no stents.
Had a portable ultrasound done the same day as procedure. The Fellow stated she had never used that machine before and from my take I think she was having trouble with it. She was really pressing hard and kept going over the same area repeatedly and not commenting. Guess they were open...

Tip for next person: Don't schedule for the Friday before a holiday weekend.
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Postby Boogshine » Wed Aug 04, 2010 6:29 pm

I haven't gotten the treatment yet and am not signed up to do so in the near future. It seems to me that this sometimes-wonderful treatment is an indicator of a larger picture: that there is hope, that MS is probably vascular, that Dr. Swank's diet should have greater support because of its vascular notions, that we should look to stimulate bloodflow through alternative means, that weightlifting and other exercise is necessary to get back atrophied muscles from years of disuse. There are a million ways we can go with the vascular knowledge, a million things we need to do, that do or do not include a Liberation Treatment. A simple procedure to treat the occurrence will not make people 100% better in and of itself. It may stop the progression, but then holistic means are necessary to get back what was lost. It may not stop progression, but diet, exercise, a positive attitude, and a spurning of harmful drugs might do more to slow it than continuing to eat Doritos and Ho-ho's and Diet Coke after a Liberation Treatment. Take heart! We will overcome the world yet!
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Postby elliberato » Thu Aug 05, 2010 4:24 pm

Boogshine wrote:I haven't gotten the treatment yet and am not signed up to do so in the near future. It seems to me that this sometimes-wonderful treatment is an indicator of a larger picture: that there is hope, that MS is probably vascular, that Dr. Swank's diet should have greater support because of its vascular notions, that we should look to stimulate bloodflow through alternative means, that weightlifting and other exercise is necessary to get back atrophied muscles from years of disuse. There are a million ways we can go with the vascular knowledge, a million things we need to do, that do or do not include a Liberation Treatment. A simple procedure to treat the occurrence will not make people 100% better in and of itself. It may stop the progression, but then holistic means are necessary to get back what was lost. It may not stop progression, but diet, exercise, a positive attitude, and a spurning of harmful drugs might do more to slow it than continuing to eat Doritos and Ho-ho's and Diet Coke after a Liberation Treatment. Take heart! We will overcome the world yet!


AMEN brother! I had the treatment in March and continue to decline. The Dr was very competent mind you. As well I have worked out my whole life and sadly have taken a back seat to the gym because i cant get up the stairs, I see a holistic Dr regularly and I am on LDN. My stiffness is so bad it throws me out of bed in the morning. I have been the pinnacle of health and got hit by the random MS arrow. I also feel strongly about the theory, but all the years these monkeys worked on making drugs to slow it they should have researched where the hell the underlying disease is. We have a long way to go with this new theory. It isnt the whole picture. Excuse me while I eat a box of ho-hos.
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Postby PCakes » Thu Aug 05, 2010 5:06 pm

elliberato..you sound an accomplished wordsmith.. thank you for the post. Could I impose on you to expand your experience? This is the first time, at least for me, to read of 'continued decline'. Restenosis, return to baseline, exacerbated symptoms, yes, but decline over months is new.
I am deeply sorry to hear of this for you and pray that the answers are in flight.

Take care...
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Postby millertime » Thu Aug 05, 2010 11:02 pm

Farmer wrote:I had the procedure 9th July. Angioplasty in both JV. Nice improvements for 10 days. Two days after I returned to Canada all my old symptoms are back. It looks to me like restenosis, I will get a date for October to go back. I know it worked, so I hope that stents will do the trick.
A while ago I read that somebody thought that the flight back could have something to do with restenosis.



Do you mind me asking the price for the stenting the second time around?
I am on the waiting list for here and understand they (as everyone doing this) will not stent unless vein does not remain open the first time. Having to go back even for the airfare and hotel is a huge expense alone, let alone paying for the procedure again.
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experience

Postby elliberato » Fri Aug 06, 2010 6:52 am

PCakes wrote:elliberato..you sound an accomplished wordsmith.. thank you for the post. Could I impose on you to expand your experience? This is the first time, at least for me, to read of 'continued decline'. Restenosis, return to baseline, exacerbated symptoms, yes, but decline over months is new.
I am deeply sorry to hear of this for you and pray that the answers are in flight.

Take care...

thanks very much for the support and concern. Venogram revealed stenosis of both jugular veins as well a malformed valve in the azygos. The areas were all ballooned. No stenting per my request. There is part occlusion but not complete. As you know veins are very elastic and ultrasound this week revealed slighted reflux but still descent flow. Three days after procedure I endured a nasty bladder infection, something I have never had in my life, be it from the catheter or the hospital or the warfarin who knows. Two weeks later I was infusing a three day solumedrol, again first time ever. Since my legs have continued to decline and walking and standing have become difficult. Of course i had high expectations and it was a real blow to not experience any gains. Hopefully this procedure will be perfected sooner than later since I have progressed to spms from rrms. I do understand that I was a pioneer and at this point I realize I should not expect much but I was at least going to hold progression at bay. I recall having a great deal of pressure in my ears for about a month but is subsided. I have always had warm extremities so there was no change. I am very happy for people who are getting improvements, I am just not one...I think part of the reason you arent hearing about this is because the guy who says anything negative gets his the group jumping down his throat telling him how he restenosed or how his Dr missed something. This is why the results are so skewed. I still feel there is much merit to the theory, but just a lot to learn. Especially when we get a few curve balls that show healthy people with twisted veins. Oh my zods!

kudos to the wheelchair kamikaze who found a video that sums it all up!!!
for your viewing pleasure http://www.youtube.com/watch?v=G7P4iFg0 ... r_embedded
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Postby PCakes » Fri Aug 06, 2010 2:15 pm

elliberato..thank you.. you are wise...

This is why the results are so skewed. I still feel there is much merit to the theory, but just a lot to learn. Especially when we get a few curve balls that show healthy people with twisted veins.


..some of us speculate (me), articulate (I try) and pontificate (me, like now)..but i'm guessing ALL of us pray for success.

we need to let everyone share without debate. we can't change or fix things ..we can only 'be there'..
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What to do, what to do, that is the dilemma

Postby dee522 » Fri Aug 13, 2010 5:28 am

I had CCSVI surgery on June 10th of this year and saw zero results. I went to Dr Gary Siskin in NY and he said I should wait a few more years to see if my symptoms worsen since the entire medical community is just researching CCSVI and there are no concrete answers as to why some see immediate results and others don't.

I was first DX'd in 2005 with RRMS. I had stem cell therapy in Costa Rica last year and those results last 3 weeks before I started to go downhill again. NY saw absolutely NO results at all. And now I'm left with this MadnesS and no real hope.

Dr Siskin said since the medical community is just now researching CCSVI, I should sit back and wait for a few more years because I try to do anything else. I really don't want to 'wait' to get worse before I can make moves at getting better.

Where do we all stand right now? The temperature sensitivity, muscle numbness and weakness and double vision I could quite easily say goodbye to...

What should I do now?? :?:
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Re: What to do, what to do, that is the dilemma

Postby dania » Fri Aug 13, 2010 7:11 am

dee522 wrote:I had CCSVI surgery on June 10th of this year and saw zero results. I went to Dr Gary Siskin in NY and he said I should wait a few more years to see if my symptoms worsen since the entire medical community is just researching CCSVI and there are no concrete answers as to why some see immediate results and others don't.

I was first DX'd in 2005 with RRMS. I had stem cell therapy in Costa Rica last year and those results last 3 weeks before I started to go downhill again. NY saw absolutely NO results at all. And now I'm left with this MadnesS and no real hope.

Dr Siskin said since the medical community is just now researching CCSVI, I should sit back and wait for a few more years because I try to do anything else. I really don't want to 'wait' to get worse before I can make moves at getting better.

Where do we all stand right now? The temperature sensitivity, muscle numbness and weakness and double vision I could quite easily say goodbye to...

What should I do now?? :?:

Good question. It is possible you have restenosed. One man restenosed the day after treatment. I got improvements but they disappeared after 1 week. And I got worse. the doctors discovered that I had restenosed and the stenosis was now 99% in all 3 veins. Before treatment the stenosis was 70%, 80% and 90% in those 3 veins. With second treatment only my vision improved, but I am much weaker and the muscle spasms are worse than ever.
About 50% restenose and some, like me get worse. The more people get this done the more information doctor will have as to the problems that arise from treatment.
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