This Is MS Multiple Sclerosis Knowledge & Support Community

marcstck · Post by **marcstck** » Fri Nov 27, 2009 4:02 pm

bluesky63 wrote:Wow -- more is being made out of my post to Radeck than I could have imagined. I'm glad if it allowed Marc to bring up this issue, but my use of the word "rare" was quite random.

bluesky, I never meant to single you out. I'm very sorry.

I simply copied and pasted my post from the other thread to this one without even thinking that it quoted your original post. I know that you weren't trying to spread misinformation, and were only trying to be supportive of our sick friend. I feel very badly that my post caused you any pain.

Since the CTV report came out, these Internet forums are bursting with newbies throwing around all kinds of false and misleading information. I think those of us that are more knowledgeable on the subject really need to be careful about what we post these days, because more eyeballs than usual are soaking up our words...

Again, please accept my apologies, no offense was meant.

mrhodes40 · Post by **mrhodes40** » Fri Nov 27, 2009 5:49 pm

(exceptions:Marie's an RN, EyeDoc is an eye doc, GiCi is a cardiac surgeon...but I think that's it.)

I must add that though I am an RN, I am not giving medical advice when I am here on TIMS. This kind of talk makes me nervous, no one should consider information on any website offered by ANYONE to be conclusive medical information for themselves, or hold up the few people who have generously offered to help clarify information so people can understand medical terminology on here as if it gives medical credibility to the work. It doesn't. I might be an impersonator for all you know, or a person with a suspended license!

My point of view is that people want information so that they have something to talk to their own doc about. I think they have a right to that starting point so they can learn and read for themselves then be prepared to be an informed patient. Marc put it beautifully in his blog that your relationship with your doc should be as a mentor/student not master serf. Information levels that playing field a bit. Freiedman's "Flat world" is kind of here; regular lay people get to know things that used to be only available to the anointed few.

Someone frome TIMS discussing CCSVI with their doctor was asked what will you do if you get progressive multifocal leukoencephalopathy? --he was choosing to use the big word to impress upon her that he was the expert in this room rather than using the more common term PML. Luckily she was smart enough to say that since she was not taking tysabri along with the venogram she was sure it would not be an issue.

I hope he looked embarrassed.

Such discussions focused on false issues is a waste of time. If he had said "the stent might migrate, have you discussed how common that is with the radiologist doing this?" that would have been helpful.

Every single person still has to make the effort to learn things themselves then talk to health care professionals familiar with their personal medical situation before they make any kind of decision whose roots are found here on TIMS. I have said this so often that I have been given some flak about "We are all adults so quit saying that.."

it bears repeating since new people may be here.

ozarkcanoer · Post by **ozarkcanoer** » Fri Nov 27, 2009 6:08 pm

mrhodes... You have hit the nail on the head. I like nice straight talk.

bluesky63 · Post by **bluesky63** » Fri Nov 27, 2009 6:32 pm

You all are extremely kind.

MrSuccess · Post by **MrSuccess** » Fri Nov 27, 2009 8:14 pm

As of right now ....we do not know fully what has transpired with poor Radek. And yet I read lot's of opinions on the flaws of stent surgery and how Zamboni's procedure is safer. Suddenly , everyone seems to know more about patient safety than Dr. Dake

As of today 64 MS patients have had successful stent surgery's . These people have reported many improvements in their lives.

I for one , remain fully supportive of Dr. Dake and his leading edge medical procedures. What happened to Radek is very distressing , but you can be assured every future patient of Dr. Dake's stent placement will be safer . Ten times safer.

Chris , go through with it.

What I'm about to say is going to piss a few people off , but what's new ?

Early stent placement patients complained of pinched nerves in their shoulders . Ever the nice guy ... Dr. Dake made the decision to use smaller diameter stents ...less crowding in that confined area of the neck.

It's true ...the road to hell is paved with good intentions...............

Dr. Dakes first calculations were correct. Hindsight is 20-20.

Another poster quotes stern warning comments by other so-called experts that CCSVI stent surgery is risky.

HELLO ?

ALL SURGERY IS RISKY. Thanks for pointing it out anyway .......

These same EXPERTS also incorrectly gave that poster information that ...we hear two CCSVI patients have died ! .....

Let's not let the FACTS get in the way of a good scary story

Chris ....have the stents ...you deserve some good health .........

You can trust Dr. Dake .......

Mr. Success

jay123 · Post by **jay123** » Fri Nov 27, 2009 8:34 pm

well said!

CureIous · Post by **CureIous** » Fri Nov 27, 2009 8:42 pm

Chris, only you can make the decision for you and feel comfortable with it. What's great about it, is that you always have the option of no without any thought of what anyone else might think. I agree with Mr. Success insofar as the pendulum going too big with the stents, swinging back the other way to the too small, but too small for that particular vein in that particular patient. Everyone's different and always will be a case by case.

This in part is what caused me to fish or cut bait but not both. My thought at the time, was given the totality of all the info available, i.e. "in the counsel of many there is wisdom", and presuming that the MRI/MRV came back positive, is there anything else in the future that may sway me to say no at that time? The only answer I came up with was, "no, there is not". I could not perceive of anything in the future that may come up from procedure related complications, that would cause me to slam the brakes on and say, "no way".

That being the case, then I decided that if there was no reason (for me, nobody else) to say no then, then no reason to not go full steam now.
Sure it was scary, sure there were risks, albeit I was not aware of ALL of them, thought I was but I wasn't, my mind kept defaulting back to the risk/reward ratio and it was leaning tremendously towards the reward side.

Whatever you decide is great. No is great and yes is great. Long as you are comfortable with it is all that matters here!

Mark.

bibliotekaren · Post by **bibliotekaren** » Fri Nov 27, 2009 10:41 pm

chrishasms wrote:...Would it be wrong to say, "No I don't want a stent, you can balloon me this time and if I restenosis you can then put one in me."...

Chris,

From my conversations with folks at Dr. Dake's and a conversation with him in August, I'm likely going to be following soon behind you at Stanford. So, this has been heavy on my mind for quite some time too and obviously more so now. Bear with me as I go all over the place a bit.

This CCSVI theory inspired me to bust out the anatomy and physiology texts devoting evenings to the deciphering of the journal articles and my MRV/MRI reports. It made so much sense for my situation based on a decade of related symptoms and brain tumor surgery last year which buggered some venous drainage.

However, the stenting aspect has always worried me. In particular, the long-term maintenance and the possibility of the stents dislodging. Although I thought this was a somewhat irrational fear on my part and didn't quite envision a dislodging event as being a express lane right into the heart.

I spoke to one of my docs about this several months ago. He said why don't you just go to Stanford and get evaluated but wait on the procedure? My fear was that I'd get caught up in the moment and not necessarily make the best choice at the time as many of us know the desperation to find the "pause button". It wasn't about trusting or not trusting Dr. Dake -- the battle was and is with myself.

So, as much as I like information, in the end only I can assess the risk-benefit ratio for my situation. I liked CureIous - Mark's response acknowledging how personal of a decision this is. I came to MS forums by way of brain tumor forums. (Do I hang out with the fun kids or what?) Anyway, I'm used to hearing people struggling with the big scary decisions -- let's see, have my skull drilled open, or pin-pointed radiation style surgery or wait a little longer? Hmm. While BTs and MS are definitely apples and oranges, it surprised me to see how MS'ers could sometimes be, umm, a tad presumptuous with each other about highly personal treatment choices. It's not like we really know the ins and outs of each others' lives and the impact of the choices.

Chris, I hope this wasn't a hijack. I'm contemplating ballooning vs. stenting too and thought that in sharing my process something might resonate with you. Personally, I'm going to let this decision marinate a bit. Not necessarily analyze it any more but just let it sit for a bit. But whatever is decided won't need to be justified to anyone. Maybe explained, if so desired, but not justified.

Ok, I'll stop the ramble. Good luck Chris -- very best on finding clarity and that sense of Knowing!

Donna

MrSuccess · Post by **MrSuccess** » Sat Nov 28, 2009 12:04 am

Donna, great post. The more I think of what happened to Radek the more I think the problem was a faulty stent.

This could be the cause.

I think the CCSVI idea and the stent procedure are sound.

Mr. Success

Loobie · Post by **Loobie** » Sat Nov 28, 2009 7:58 am

It just comes down to now there are more KNOWN risks. So you have to go in with knowing what they are and deciding if you want to take the chance. Although I'm a pretty ballsy guy, I was presented with hardly any risks, although I'd have probably done it anyway. It really just comes down to "do you want to take the risks?". It really does come down to that.

And now with Radeck I imagine people are saying "am I going to be the 'finder' of the next new possible complication?". We are learning as we go, it's as simple as that. We are so used to, at least feeling like, knowing what's going to happen since every surgery I've even had was a commonplace thing where literally thousands had come before. This ain't that. It just isn't.

So Chris, you're obviously pretty ballsy too. You did the HiCy treatment which looked like hell week from following your blog during the treatment you had. So you just have to talk to Chenell and decide if you want to go into semi-uncharted waters. I don't imagine there's anything anyone could say to make it any easier. Would I do it again? I would knowing what I know now that I'm on the other side of it, but looking into it with the things that have happened, I'd definitely have given it more careful consideration which is what it sounds like you are doing. Good luck, it's not an easy decision to make knowing what we know now.

wobbly · Post by **wobbly** » Sat Nov 28, 2009 8:31 am

hi all/ still following very closely/ 2 stent or baloon / i spoke with the big shots [ don t want 2 quote] abt this / here in buffalo it seems that they r totally leaning on balloning 4 they don t no the outcome down the road / they r concerned with all the meds needed after the stenting/ the balloon is not permanent/ however a once a year clean up seems 2 be what they r leaning towards/ myself i would love 2 get cleaned out again/ it is almost a year / we are desperate and the suffering continues so doing something seems better than letting this crap run its course/ chris --good luck / this is definetly at least part of an answer/ time is not on r side / STAY STRONG ALL ---PEACE

marcstck · Post by **marcstck** » Sat Nov 28, 2009 9:07 am

Radeck just chimed in on the other thread, and fully agreed with my assessment.

So I guess I'm not the doomsayer that some would make me out to be...

Chris, I understand completely the urgency you feel in taking care of business. I'm right there with you, without any intervention I'll likely be bedridden within the next 12 months. I've gone through more treatments than I can count, some of them very "outside the box". Some of those treatments I regret, others were worth the shot. All have been learning experiences.

Just make sure you reach a decision based on a clear understanding of the facts and risks involved, and not on emotion. This won't be your only opportunity to address this issue. Waiting a few months until the picture becomes clearer, and independent research results start coming in, might not be a bad idea. If the results are positive, more surgical options will become available, and you might find a fuller menu of choices before you.

chrishasms · Post by **chrishasms** » Sat Nov 28, 2009 9:15 am

Loobie · Post by **Loobie** » Sat Nov 28, 2009 10:15 am

Brother, you have my vote of "good luck". The way you're going about getting this done locally is pretty cool!

123

Re: Jan 4th is my turn...however