This Is MS Multiple Sclerosis Knowledge & Support Community

Sounds like you've got your plan Chris. Good luck!

Loobie wrote:It just comes down to now there are more KNOWN risks....

I was going to post something along similar lines, but Lew captured pretty well what I was going to write.

It seems everything with MS treatments is a tradeoff. Take Tysabri - it's not a front-line treatment due to the PML risk (however small or large). And I remember discussing with a nurse how i was interested in getting Campath as a treatment. She told me I shouldn't even consider this until I start to worsen, given the known and unknown complications,.

That said, I think it's a must for someone undergoing CCSVI treatment to be aware of at least the known risks. Maybe it's been stated here before, and I missed it, but I never really thought of the stent dislodging and traveling straight to the heart. And I think that should be part of the trade-off - how bad a person's MS is vs. the chance, however small, of a complication like this.

Anyway, I hope this isn't disrespectful to Radeck. He has to be going through a nightmare right now.

Echo all that Chris! That's something I've been thinking about as I gaze into crystal ball and see mostly angioplasty being done in the near future before stents. It just seems like something you could talk a doc into a bit easier. Much easier sell. I think angio is something that could spread like wildfire and stenting cannot and Dr. D can only do so much on his end.

Well done KUTGW.

Mark.

One thing to think about is that if you were to do angioplasty only, the "bad" scenario is that some of the veins would close again and you'd need to consider another procedure in a year or so. I believe doctors will have a lot more understanding and experience with CCSVI in a year, so any intervention procedure at that time would be less experimental and presumably safer, having benefited from a year of learning. I think Dr. Zamboni's small sample of interventions showed a 50-90% 18-month success rate for angioplasty, so as far as we know, the odds are in your favor that stents would not be needed at all (in that time).

And another commenter said you should "trust" Dr. Dake. This isn't entirely about trust, since Dr. Dake is learning as he goes, too. In fact, this comment reminds me a little of the difference between a pig and a chicken when it comes to a bacon & eggs breakfast: the chicken was involved, but the pig was committed. While both you and your doctor care deeply about your long-term health, nobody's as committed to it as you are. (and the pig/chicken comment is intended to be humorous, hopefully nobody is offended)

/Scut

I like that old joke , Scut.

Stenting of neck veins is , I believe , new. But I'm not a doctor , so bear that in mind. Many people have flocked to Stanford to have this procedure performed by whom has been described as , a super skilled surgeon ..Dr. Dake.

If you have been following this developing story ...you will recall that this stent procedure has produced some good outcomes .

One famous poster stated..'' Doctor Dake gave me my husband back ''

There was one tragic event . A lovely lady named Holly , had stent surgery . On her way home , she fell asleep . She passed away. Our Dr. Dake went to her side. It turned out that Holly had a brain hemorage . Her family posted here at TIMS that Dr. Dake was not at fault.

Holly's mother died young of the exact same terrible cause. Tragic.

One by one MS patients have sought out Dr. Dakes stent procedure.

Some have reported terrible neck/shoulder pain. Not a bad trade off in light of better walking , balance , and bladder improvements . You can read these posts yourself. One fellow , who arrived for Dr. Dakes stent repair -in a wheel chair - upon arriving home , rototilled his garden !!!

I understand that over 60 people have had stent surgery . Some have returned and had additional care. With , I'm led to believe , good results.

In an effort to resolve patient shoulder/neck discomfort , Dr. Dake modified his stent sizes . He started inserting smaller diameter stents.

All went well with this new stent sizing , until just recently .

A patient had a stent dislodge , and flush into his heart. OMG.

Fortunely , it has been retrieved. We all hope , with no harm.

As of this post , why this happened has not been explained.

I'm not jumping to any conclusions . But I have my hunch's.

And I suspect .....a faulty stent .

Trust Dr. Dake ? Absolutely . Many have . You can also.





Mr. Success

Well I head out to Stanford next week. I have already given myself "permission" not to have the surgery if I don't feel comfortable with it (as humans we are all so tough on ourselves and worry about what others will think). Like I said in an earlier post I have very mild MS which is being managed well with Tysabri, although I may not be on it much longer as I get closer to the 2 year mark. I feel like I have some time--well as much leeway as I can predict with this highly unpredictable disease. But I look forward to getting the testing done and consulting with Dr. Dake. I feel it is always smart to have as much information as you can about your medical conditions. I will keep the forum posted on what I find out and whether I decide to wait on surgery or go for it.

Thank you so much to the 60+ people that have gone before and really became part of a worthy important "experiment." I don't think you will ever be forgotten and we appreciate your contribution. I wish everyone the best possible health and happiness.

I'm on the same boat ... am not closed to the stents, but the combination of the newly known risks and, moreso, the oincredible momentum CCSVI has in Canada, etc, makes me feel somewhat less urgent about getting any stenoses fixed ASAP ...