This Is MS Multiple Sclerosis Knowledge & Support Community

I think we have moved beyond all those rosy reports of instant improvements why keep pounding the obvious, we know lots of people improve with angioplasty, the first time in particular.

I should think a newbie especially one that has to pay out of pocket is interested in hearing how likely he/she will have to pay up 1-2-3-X times and if the initial improvements stick after multiple treatments and how likely it is to end up worse with multiple treatments etc. I am also interested in this information even anecdotal, but it sure would be nice if IRs actually stored this data and followed up with patients.

jamit wrote:I think we have moved beyond all those rosy reports of instant improvements why keep pounding the obvious, we know lots of people improve with angioplasty, the first time in particular.

I should think a newbie especially one that has to pay out of pocket is interested in hearing how likely he/she will have to pay up 1-2-3-X times and if the initial improvements stick after multiple treatments and how likely it is to end up worse with multiple treatments etc. I am also interested in this information even anecdotal, but it sure would be nice if IRs actually stored this data and followed up with patients.

I think jamit you made a very good point. We should understand that raising safty issues are not aginst us or CCSVI but for us and CCSVI. The clinics should do much better in documentation for the sake of their patients. We should know why patients get into a worse condition when restenoses happens than they were before the operation.

A well respected vascular surgeon involved in CCSVI research told me that restenoses is just a matter of time. It will alwas happen, so it will affect all of us. It is very nice reading all those nice reports about improvements, but we all knew about these things this is why we chose the operation. It will take time to prove the merits of CCSVI operation and I think we can wait for that as long as we can get a safe treatment with no complications after treatment. So, I think we should focus on SAFTY and not causing damage to our health..

like ive been saying on every thread i comment on, i think people are jumping the gun on getting treated. we need to find the cause of stenosis. I believe it to be from things(bones, muscles) putting pressure on the veins to the point it collapses. getting treated is just temporarily fixing things but eventually the vein will close back up and even worse because now the vein is weaker from being stretched,so when it collapses again it will be worse like we're seeing. have we seen stenosis on different parts on a vein? why havent we seen stenosis happen at different parts of a vein that has been stented? why is it that only that small section of vein is getting stenosised ?


i think everyone should get tested but not treated then have where is showing stenosis fixed(upper cervical care, TOS, and CTOS) then if needed getting treated.

I cant be the only one thinking about this?

civickiller wrote:like ive been saying on every thread i comment on, i think people are jumping the gun on getting treated. we need to find the cause of stenosis. I believe it to be from things(bones, muscles) putting pressure on the veins to the point it collapses. getting treated is just temporarily fixing things but eventually the vein will close back up and even worse because now the vein is weaker from being stretched,so when it collapses again it will be worse like we're seeing. have we seen stenosis on different parts on a vein? why havent we seen stenosis happen at different parts of a vein that has been stented? why is it that only that small section of vein is getting stenosised ?


i think everyone should get tested but not treated then have where is showing stenosis fixed(upper cervical care, TOS, and CTOS) then if needed getting treated.

I cant be the only one thinking about this?

You are right. We should get our head out of the sand and face reality. We need to find anwsers to these questions, otherwise we just lose time. Painting rosy pictures does not help us, it only misleads us.

We talk about lot of things here on different threads, but I have never seen a short study from a doctor that would explain his thoughts on what causing stenoses, how it can be treated and what are the potential complications after operation and why they happen.

I have been in contact with several IRs but I have never got full answers to my questions, only half ones in short sentences. Wouldn't it be easier to post a few pages about these issues by an IR?

We should be aware of that restenoses will happen to all of us who have no stents. It is just a matter of time. So, this is all of us problems. With stents there are other issues, even many IRs are strongly against it.

To some extend one can get a first hint here:

http://www.ccsvi-tracking.com/index_timeline.php

R.

a short study from a doctor that would explain his thoughts on what causing stenoses, how it can be treated and what are the potential complications after operation and why they happen.

http://bmctoday.net/evtoday/pdfs/et0710 ... lafani.pdf

Cece wrote:

a short study from a doctor that would explain his thoughts on what causing stenoses, how it can be treated and what are the potential complications after operation and why they happen.

http://bmctoday.net/evtoday/pdfs/et0710 ... lafani.pdf

Thanks, Cece. Itis very helpful. My understanding was that dr Sclafani has a new theory about stenoses that he has not published yet, am I right?

griff wrote:Thanks, Cece. Itis very helpful. My understanding was that dr Sclafani has a new theory about stenoses that he has not published yet, am I right?

He's tweaked his techniques since then but I am not aware of any new theory about stenoses? There is the funnel analogy, that although the vein wall near the valves looks strictured it is actually a narrowing due to the blood flow being blocked by the valve, meaning that the vein wall itself is actually healthy and therefore caution needs to be taken to preserve the vein wall and to treat only the bad valve. I know a patient who had the area right above the valve ballooned (because of apparent narrowing there) and the valve itself was missed; this fits right into the funnel analogy as I understand it.

We are dealing with the human body plus multiple sclerosis plus a procedure being developed. Lets be clear there are no guarantees if you have de-stenosis undertaken at the current time. This is a risk of getting de-stenosis for MS symptoms, no one can be absolutely sure of the outcome. My estimate is that in 3-5 years from now there will be scientific data on restenosis rate but before that research can start an agreed de-stenosis method must be finalised.

No one knows, no guarantees are the answers most people do not want to hear.

Knowing all this I still went ahead last June, time will tell if I made the correct decision.

MarkW

From my own personal experience I would advise any newbie to go for the angioplasty first and stay away from stents, or wait until more is known about the CCSVI procedures in general. By waiting a year or more, the doctors' experience with the procedure will grow and maybe there will be new techniques, new stent types, etc, etc. I chose stents because I knew my right IJV would not stay open without it. And now I have my LEFT IJV completely occluded by a stent filled with scar tissue and maybe a clot. This is a much more severe problem to deal with. My right IJV also has a stent that is just fine. When the doctors get more experience perhaps restenosis will become less common.

ozarkcanoer

9 replies and 0 replies to my question now that is disappointing. Really nobody here with no restenosis 1 year after angioplasty? Dismal prospects.

i don't answer your question either but i have no restenosis after 3 months. My next appt with IR doctor will be in october, it makes 9 months and i'll let u know how it will work. right now i'm with u and also would like to hear from someone having this procedure one year ago and feeling good.

A year ago would be 4/15/2010. At that time Dr. Simka was openly practicing but I don't know of anyone else. I am not sure what percentage of Dr. Simka's patients received stents. Dr. Dake had treated sixty patients the previous summer but primarily used stents. We don't really have a lot of long-timers here on TIMS, period. The people I can think of who still post and were treated over a year ago were CUREious (with stents, doing well); Erika (not sure of stent or not); Cheer's husband (with stents); magoo (with stents); drsclafani's first 20 patients (no stents but 10 mm balloons led to quick restenosis). Is there anyone else here period who qualifies for the "over a year" timeline? Availability of the procedure increased dramatically over the summer so it will be this summer that that cohort reaches their one-year mark and even so that was the group that was far more likely to receive the extra big balloons. The technique seems to be more refined now.

No not many people posts on TIMS anymore, I joined in 2009 and don't come here often, but still check in now and again. I hope it is not the "people with success with anything tend to verbalise it a lot and people with no success tend not to post much". There are plenty of people who read on TIMS so it is not like it is not visited anymore, and the various ccsvi facebook sites don't have any lack of stenosis reports either so I wonder if the 50% restenosis from Zamboni can be relied on much.

Sorry people, I do not see much. My right eye nerve went crazy again. It is still very painful and as my left eye has not been OK for reading so it is difficult for me.
I am not even able to read everything properly.
I have a stent in my left jugular vein. My valves were inverted. It will be 1 year and 6 months soon.
As many know I am slowly getting worse - I am weaker, especially my arms and now I have more damages in my right eye.
I think my stent is OK. I am not so sure about the flow. It has been very slow. My MRI shows no change after more than one year but I do not care because I have more limitations.
But anyhow, I would do it again.
Erika