To Stent or not to Stent? Concerns

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

Postby Billmeik » Sun Jun 27, 2010 10:26 pm

I went to poland under the impression that I had a simple membrane blockage that could be fixed by angio alone. With venography they found a serious stenosis on the opposite side that reclosed 2 times after ballooning. On the table they asked me to decide about the stent. I said we needed to get my gp wife who was waiting in the next room and ask her... They wouldn't ask,(I think they know she was against them) and really I think my flow only increased by 10 or 20% without a stent. Things closed back up right away.

Now I think about it every time I walk down the street like a drunk and people stare. Should I have gone for it? If I have another ms attack Im going back for the stent.
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Postby Interrupted » Mon Jun 28, 2010 8:53 am

Shea wrote:If the doctor recommends a stent and you refuse a stent...what results should you expect from your angioplasty alone? I believe that you are back to step one minus $5,000 for the venogram and the angioplasty.


Re: this, and Bill (i'm sorry to hear you're stuck in the status quo after that). Yes this is the exact predicament. I guess my feeling is that if this alone doesn't work then i've tried it, and will have to watch and wait to see if they improve or change the stents themselves and see how people do. See if my confidence in them improves. It may cost another loan to go back but when it comes to playing risk with what health you have, money seems to lose importance.



Shea wrote:In the end, it's a personal choice and I think it's best to discuss your feelings with the doctor beforehand. Good luck and hopefully angioplasty is all that is needed.


Absolutely, and I feel it's wise to read everything from all sides and not be blindly drawn on the positives. People's opinions here do matter too, especially those that have experienced the procedure and those who still have questions.

Is it possible to talk to Dr Simka beforehand? Or do you mean when over there but before the op?

Ultimately I still haven't made my mind up as often every new piece of information sways my mind another way. Like many I suppose i'm trying to make the wisest judgement call and am not quite there at this moment.

Thank you all x
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Postby Shea » Mon Jun 28, 2010 12:41 pm

Interrupted: Dr Siskin is the doctor that I will be seeing in August. He is very approachable either by email or phone and I feel quite confident in his judgment as to whether a stent is required or not. Reseaching the various forums will probably leave you frustrated because I'm not sure if there is a definitive answer..it's a personal choice. I still believe if you could talk to the doctor beforehand and explain your feelings and hear his/hers, you might
find it helpful. Doctors are not all on the same page when it comes to stents.
Good luck with your treatment.
Billmiek: Sorry to hear that you haven't had a positive experience so far.
It seems alot of people need 2 treatments for a successful result. Don't give up. Hopefully, you can have the next treatment done closer to home.
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Postby nn98200 » Mon Jun 28, 2010 6:19 pm

I had angio (no stents) in March in Poland and I had some great improvements (my spastisity disappeared, I had strength to walk unaided in the morning and in the evening, my bad sensations in the hands at night disappeared, my head tensions disappeared and I began to tolerate heat) but the spactisity and the ability to walk unaided more (I use a walker the rest of the time) went away about 2 weeks later. I knew I had restenosed. In mid May I had another angio (no stents) by DR Siskin and I felt better on the following day and then about 4 days later for a day but far not like after the procedure in Poland. A few days after the procedure I told the doctor my veins may have restenosed and asked him if he can check them via doppler. He said that would not tell him anything and that I have to go for venography but if they have restenosed again, he said, it would be too risky to put stents in since they may restenose with the stents in and then they'll be out of options. In my case he draw a conclusion knowing my past experience with ballooning. And, please correct me if I am mistaken but wasn't Dr Dake placing stents in veins without having performed angio once or twice before so he would know how prompt to re-stenose the veins are? BTW, Dr Siskin said he already has a patient whose vein restenosed with the stent in.
Last edited by nn98200 on Tue Jun 29, 2010 2:07 pm, edited 3 times in total.
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Postby Billmeik » Tue Jun 29, 2010 5:16 am

another consideration is the diameter of the stent. They are using 12mm in poland these days..that won't migrate but is almost twice the size of the vein..and whether its over a valve. Mine was.
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Postby Interrupted » Wed Jun 30, 2010 3:45 pm

nn98200 wrote: ...he said, it would be too risky to put stents in since they may restenose with the stents in...


Is that really possible?? I hadn't heard of this :roll:
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Postby Interrupted » Wed Jun 30, 2010 3:48 pm

Billmeik wrote:another consideration is the diameter of the stent. They are using 12mm in poland these days..that won't migrate but is almost twice the size of the vein..and whether its over a valve. Mine was.


Can you expand on what you mean hear Bill? I'm mid relapse, foggy and being thick with regards the valve thing and what size of stent is actually preferable and why :oops:
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Postby Interrupted » Fri Jul 02, 2010 6:43 pm

Going to bump this, sorry, but i'm befuddled to know the facts about this re-stenosing with stents in. Can anyone enlighten me on the mechanics, danger factor, and any case stories of this?
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Postby JoyIsMyStrength » Sat Jul 03, 2010 2:59 pm

Here Interrupted, let me bump this again for you. :wink:

Here's what I would like to know: How many have had balloon angio only (no stents) and seeing sustained improvements? My jugulars were ballooned and improvements only lasted a few days. I sure wish they had used stents.

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Postby Interrupted » Sat Jul 03, 2010 4:26 pm

JoyIsMyStrength wrote:Here's what I would like to know: How many have had balloon angio only (no stents) and seeing sustained improvements?


Very good question, I think people are crying out for some stats on those already liberated.

I'm very sorry yours didn't last. Out of curiosity, did you feel any benefit in those two weeks?
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Postby dodgeviper » Sat Jul 03, 2010 5:46 pm

Dr. Simka wrote (on another blog) a well-reasoned defense of stents.

Every procedure and device (including stents) has risk.

So does doing nothing.

So does just ballooning.

You just need the complete information to determine which risk is greater.

I VOTE WITH RHONDA'S ANALYSIS ABOVE.
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Postby pklittle » Sat Jul 03, 2010 6:56 pm

newfie-girl wrote:Interrupted: I too have concerns about using stents. I have an appointment for Aug. 24th with Dr. Siskin and it is my understanding that he will stent if he deems it necessary, however, I am not comfortable nor convinced that we know enough about CCSVI using stents and like you I AM QUITE NERVOUS :? about the possability that Dr. Siskin may find it necessary in my case.
I read here somewhere that if a doc wants to stent and the patient is not willing to go along with the decision then perhaps we should seek another doc? I personally will be e-mailing Dr. Siskin and discuss this with him in more detail and only hope that he will respect my concerns/reservations about this very important topic.
I would feel better if we had more research on stents and the proper stent were developed specifically for veins, there is still so much to learn and we have to consider the implications of stenting down the road as an option, I want to be liberated just as everyone with MS but I am not willing to risk the slight chance of something going wrong, cause with my bad luck :roll: :roll: It would definitely happen to me :cry:

Good luck my friend and in the end it should be your decision :!:


Hi,
I was treated by Dr. Siskin 3 weeks ago (angioplasty only). I first asked him for clarification on his use of stents. His explanation to me made perfect sense. Dr. Siskin will only stent if after ballooning, the vein is WORSE than it was BEFORE ballooning.
Hope this helps.
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Postby JoyIsMyStrength » Sat Jul 03, 2010 7:40 pm

Interrupted wrote:
JoyIsMyStrength wrote:Here's what I would like to know: How many have had balloon angio only (no stents) and seeing sustained improvements?


Very good question, I think people are crying out for some stats on those already liberated.

I'm very sorry yours didn't last. Out of curiosity, did you feel any benefit in those two weeks?


I had my procedure exactly one week ago and was happy to see improvements. By last Thursday nearly all positive effects had vanished.
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Postby dodgeviper » Sat Jul 03, 2010 8:02 pm

JoyIsMyStrength wrote:I had my procedure exactly one week ago and was happy to see improvements. By last Thursday nearly all positive effects had vanished.
Just to clarify this thread, JoyIsMyStrength, did you have any stents placed?

If I recall correctly, about one-half of Zamboni's balloon only treatments restenosed, so that (stent or not) is a crucial item of information to include here.

Improvements followed by return of symptoms is expected in about half of the Zamboni testing group. That is not a reason for despair, just a situation where stenting needs to be considered (and its risks) versus the probability (near one-half) of restenosis and disease progression.
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Postby JoyIsMyStrength » Sat Jul 03, 2010 8:29 pm

No, as I stated previously:

My jugulars were ballooned and improvements only lasted a few days. I sure wish they had used stents.


No stents. At all.
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