To Stent or not to Stent? Concerns

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

To Stent or not to Stent? Concerns

Postby Interrupted » Sun Jun 27, 2010 10:43 am

I'm due at EM Poland in August and am 75% happy about going ahead, very glad to have a date, but now it's suddenly here...

My big worry about this is stents. I guess i'm hoping any problems there proves to be will be fixable via angioplasty(s) because the word "stent" brings me out in a cold sweat.

Just how safe are they? I guess we've all read about the one that travelled disasterously, but not just that, the question of blockages (this seems quite common) and just how dangeous is it if that happens? How easy is it to get back into the clinic at Poland if it does? Is it even safe to fly if one does become blocked? How worried should you be? You get my gist 8O
The fact that they can just slip and end up anywhere terrifies me but I have no idea what the chances of this are.

We seem to have heard a lot about problems in America, but is the Polish clinic so far squeaky clean on a problematic basis?

Information along this err... vein would be very much appreciated because right now my brain needs to have a grip of the facts in this area. And i'd like to stop worrying so much (but not blindly)! :D

Thank you wonderful people for any/all help xxx
Last edited by Interrupted on Sun Jun 27, 2010 3:05 pm, edited 1 time in total.
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Postby esta » Sun Jun 27, 2010 10:51 am

hi interrupted
i remember reading Simka's reply to a neurologist in n. america approx. 6 weeks ago, that he had done 100 stents and zero problems...
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Postby ErikaSlovakia » Sun Jun 27, 2010 12:37 pm

Hi Interrupted!
I am only number 2 from Poland. My stent is fine. Many patients have been getting stents into jugular veins in Slovakia for many years because they had problems with kidneys. It is actually not new to put stents into jugulars.
I think MS is worse.
Good luck!
Erika
Btw, doctors in Slovakia do the procedure for MS patients. They use stents. Patient number 5 got 4 stents. She was having pain for 7 days. She is fine now.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Interrupted » Sun Jun 27, 2010 1:08 pm

esta wrote:hi interrupted
i remember reading Simka's reply to a neurologist in n. america approx. 6 weeks ago, that he had done 100 stents and zero problems...


I guess that insinuates (since they've had 300+ patients) that the majority then do not need stents :?:
Which would be odd seeing as 1 stent is included in the package price. It read like there's a likelihood you'll be needing it.
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Postby Interrupted » Sun Jun 27, 2010 1:12 pm

Thanks Erika, I guess the worry is based around the low number of patients that have been seen (i'm guessing not yet 1000 worldwide), and it seems not exactly a low incidence of problems mainly based around stents.

Much as I hate MS i'm not sure about risking a stent breaking loose around my venous system or blocking up (I still don't know what this means or how dangerous it is) I guess... that's the eek I feel 8O
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Postby Cece » Sun Jun 27, 2010 1:52 pm

I trust Dr. Sclafani, who thinks stents are not a good idea. There are a lot of twisting forces in the neck; these are being put into relatively young people with many decades ahead in which a problem could develop; they have not yet been tested in veins and the neck; Dr. Zamboni has never had to use a stent but treats restenosis with reballooning; there is a real likelihood that venous stents will be developed and marketed in the next five-ten years; once stents go in, they become a part of you, they are not coming out.

Blocking up means either getting blocked with a thrombosis clot or having the regrowth of the veins (that incorporate the stent into them) grow over the stent and keep on growing, closing it off. Both can be treated with in-stent ballooning, anti-thrombolysis, that sort of thing.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Interrupted » Sun Jun 27, 2010 3:04 pm

Cece wrote:I trust Dr. Sclafani, who thinks stents are not a good idea. There are a lot of twisting forces in the neck; these are being put into relatively young people with many decades ahead in which a problem could develop; they have not yet been tested in veins and the neck; Dr. Zamboni has never had to use a stent but treats restenosis with reballooning; there is a real likelihood that venous stents will be developed and marketed in the next five-ten years;...


Thank you Cece, I mean this is a lot of my concern.

Re: The highlighted section, does anyone else feel like this?
Or in general feel they're happy with angioplasty but would rather wait a while if a stent (or six) is deemed necessary?

(My sincere thanks to all who take the time to answer within this thread)
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Postby Rose2 » Sun Jun 27, 2010 3:32 pm

HI. I am very ProStent.
No, I am not willing to wait for studies for even 20 years. I am the study.
I had 1 high jug stent and 1 azygos stent and 1 angio at IVJ at clavical.

Trust your MD to evaluate and treat as needed during Venography and don't tie his hands so that he cannot treat you as he would like.

So Zamboni doesn't do stents. So he doesn't have a study to support stents. This does not mean Stents are bad. It means he doesn't do stents.

I am MS Free. Thank You God and Dr. Dake for my stents.
My stents are God sent and I surely do not want to wait for 20-30 years of research papers while my MS progresses.
There is no guarantee to any of this, just as there is no guarantee to how each or our MS will PROGRESS.
Rose.
My advice is to not micromanage your vasucar MD and let him do his job when he is in there. Only he knows what he sees and feels. go ahead. Let it rain...;)
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Postby newfie-girl » Sun Jun 27, 2010 4:00 pm

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 :!:
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Postby jamit » Sun Jun 27, 2010 4:01 pm

I am also going to katowice in August, I think, said no thanks to a July appointment due to surgery. I will not have stents, I am happy to wait for the stent research/manufacturers to catch up. I will have repeat angioplasty as many times as necessary until I know for sure what the stent risks really are based on science and statistics to back it up.

I do not take any doctors word for it being safe, I have seen all too many doctors give me too much misinformation over the years to trust them and to me the research just isn't there yet.

You will simply have to do what you feel is right for you, nobody here can garantie anything, but we can all play stent experts or stent haters on the internet, take your pick.
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Postby Rose2 » Sun Jun 27, 2010 4:13 pm

Newfie Girl:

your quote:
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,
End Quote

It sounds like you need to step back and watch the results and studies that will come out of all of this.
I do not think you want to be Liberated if there is a risk of the slight changce of something going wrong.
There is the slightest risk with ANY medical procedure that is done. That is the nature of the beast. That is medicine. Why do you think they are still Practing Medicine? Because it is not an exact science. There are no guarantees. Just paperwork to sign that says you understand the risks involved.
I would advise you to go forward with your Liberation when YOU feel confident. Yes, we all want to be Liberated, but make your own decision as to when that is. You must feel good about the decision you make.

Rose.
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Postby Cece » Sun Jun 27, 2010 4:20 pm

There's a big difference between ballooning and ballooning plus stents. The death and the migration occurred with the use of stents. I would not fault anyone for choosing ballooning only at this time, nor would I fault anyone for choosing ballooning plus stents or choosing to wait until more is known.

Now I just reread newfie-girl's post and I see the part about not wanting to risk a slight chance and I agree with Rose2 that there is risk in ballooning as well.

newfie-girl wrote: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?

Are you thinking of the conversation in Dr. Sclafani's thread, about anticoagulants, and if a patient wanted anticoagulants when the doctor did not want to do them that the patient might be best to find another doctor? I see a difference there where the patient is pushing for something riskier (anticoagulants) whereas by opting out of stents a patient is pushing for something more conservative. It's more ok to ask a doctor to do something more conservatively than it is to push for more aggressive treatment, perhaps?
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Postby Interrupted » Sun Jun 27, 2010 4:43 pm

I think there's a middle ground. If newfie feels the same as I do I don't know, but personally I feel that the risk with balloon angioplasty is a fair percentage smaller than with stents - although i'm fully aware it's not risk free. Please correct me if i'm wrong, i'm only going by what i've read and humbled by people's knowledge on here.

As far as I know the risks of balloon angioplasty are pain infection, nausea, bleeding, headache, bruising, allergy... (anything else i'm ignorant of?) which compared to stenting is fairly minimal and the risk of death/serious problems incredibly low like 1 in a couple of thousand?

I guess my point is that I want to proceed, I don't want to be liberated any less that anyone else, but I DO want to do it within realms that fit my feeling of safety. Which I think is wholly understandable. And because the risks with stents are so much more, and the stents themselves (from what i've read) not designed for the area, ultimately i'd like to know what i'm dealing with, know my options, and hopefully only need the ballooning anyway:-)

I would hope that under private treatment at a very expensive price, we can have the scans and decide how far we want to go when we know what the situation is. I don't think this is micro-managing, I think it's just common sense and self preservation under enormous pressure in an experimental stage.
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Postby magoo » Sun Jun 27, 2010 4:59 pm

Cece wrote:There's a big difference between ballooning and ballooning plus stents. The death and the migration occurred with the use of stents. I would not fault anyone for choosing ballooning only at this time, nor would I fault anyone for choosing ballooning plus stents or choosing to wait until more is known.


The death was due to an unrelated brain hemmorhage made worse by blood thinners, not stents.

I may have had reservations about stents if there were as much conversation about them as there is now. I think I was lucky because I trusted Dr. Dake and when he showed me the stent, flexible and strong, and told me in his opinion it would last a lifetime, I had no doubts. I still feel the same way. I feel lucky I don't have to have to obsess about my vein collapsing...and believe me I would. I took the Plavix, Coumadin and aspirin as directed so that there would be less risk of a clot and when I was rescanned at 2 months my stents were nicely integrated into the vein.
My improvements have been wonderful. I went into this wanting my veins fixed and my flow corrected. I knew it could not be healthy to have blocked veins.
I feel too many now expect too much. I didn't know what permanent damage had been done and what would be fixed. In my case I was lucky. I wish everyone was as lucky.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Shea » Sun Jun 27, 2010 6:37 pm

I will also be seeing Dr. Siskin in August. Although I have some concern with stents, I will trust Dr. Siskin's judgment as he only does stents when he feels it is a necessity. Cost is another factor. Insurance doesn't cover the costs of the treatment as I'm from Canada. Hopefully, everything will go well and I won't need the treatment more than once.

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.

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.
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