Info..

[Wobbly]

http://www.mssociety.ca/en/research/medmmo_20091021_faq.htm


I received this from the MS Society Canada... just thought I'd share..

wobbly

[truelove47]

Thank you for the link

Wishing you well


Linda

[opie74]

Thank you for your answer!  I am considering looking into it after we have another child.

[patientx]

Being a doctor, I was curious if you have read any of these papers, and what your medical opinion is.

[Suzie9]

Does anyone know of the procedure in the UK?

And what happens if a patient is already on blood thinners such as warfarin?

[Lulu54]

this posted before I was done ....

With this news circulating so widely the past few days, I would be Dr Dake's phone has not stopped ringing.  He is definitely not uder the radar now.  

good luck to everyone considering this,
Lulu

[Lulu54]

That's amazing that coumadin is only taken for two months.  The metal stents don't allow the blood to stick to it like the drug-eluting stents are known to do.  

This is all so fascinating to me -

[shoshin]

@Opie Some people who have had the procedure have continued with the standard DMDs (even Tysabri) and some have not. It is not clear whether or not there would be benefit from continuing since so much is unknown..

The angioplasty/balloons that Dr. Zamboni is doing are safer than the stents that Dr. Dake is doing at Stanford, but many of the patients with balloons had restenosis and had to have repeat angioplasties. Apparently, the arteries are more rigid than the veins and are more likely to hold their ballooned shape. Dr. Dake was finding that many of the veins he opened with balloons recollapsed as soon as the balloons were removed.

This post from the This is MS forum addresses tries to address this point:

“Zamboni was able to treat some of the MS patients...but not all. The patients he couldn't help were the ones with high jugular stenosis. My Jeff, Marie, Lew, etc would not benefit from the Liberation. Dr. Zamboni treated 100 patients who had low jugular and azygos stenosis, which could remain more open with ballooning. But he's tested hundreds of other patients and didn't balloon them. And in those with jugular ballooning, 47% had restenosis after a year or so.”  (from the thread http://www.thisisms.com/ftopict-8834.html)

On the one hand, stenting have been done for many years and is considered an ordinary procedure. On the other hand, this procedure is putting stents in an area where it generally hasn't been done before and the long-term safety profile is not known.

Another comment on safety from Dr. Marian Simka, a Polish specialist in angiology:

"Stenting of occluded vessels is currently a routine procedure. Yet, complications are always possible. It is very difficult to estimate complication rate for this new procedure. In a case of stenting of other veins the most common complication is the occlusion of stent with thrombus, but this is usually a consequence of stenting of a disesed vein (post-thrombotic). In MS patients veins are healthy, they are only either hypoplastic, or occluded by pathologic valve. Therefore thrombosis is unlikely. Other complications include mechanic fracture of a stent (resulting in reoclusion) - this can be managed by restenting or balooning. A migration of the stent is also possible, but it is very rare complication." (from http://www.thisisms.com/ftopict-8648.html)

Some other dangers that have been mentioned (that I can remember at the moment) include the possibility of accessory nerve damage (which seems to resolve with time and PT; also Dr. Dake is now using smaller stents, which seem to be less problematic); radiation exposure during the procedure (needed so they can see what they're doing), and questions about the life expectancy of the stent and how hard it might be to repair if necessary (Dr. Dake is optimistic given that there isn't a likely mechanism for re-clogging as often happens with cholesterol in arteries, but this is unknown territory).

@Lulu As I understand it, currently, Dr. Dake is recommending Coumadin for two months after surgery. This is not (as you know) a drug to take lightly. After that, he is only recommending a baby aspirin daily.

sho

[Quixotic1]

I have a bleeding disorder, like a mild form of hemophilia.  I wonder if that would exclude me from such a surgery or if it would just allow me to go with the anticoagulation.  I am also allergic to aspirin and the NSAIDS (hives).

q

[jensequitur]

CTV just did an article on Dr. Zamboni - you can view the video here.

http:  //toronto.ctv.ca/servlet/an/local/CTVNews/20091120/MS_W5_091120/20091120/?hub=TorontoNewHome

[opie74]

If they did not use a stent, and just did the angeo, it would be no big deal to give it a try.

[Lulu54]

Thanks patientx for the additional information.  The metal stent would be much better - since you can get by with coumadin as the blood thinner.  

There is grower dissent in the cardio world as well about the need for stents when angioplasty would be equally effective with the long term need for drug therapy to keep it clear.

This all makes for fascinating reading - it will be so wonderful if it turns out to be a cure for many.

L

[patientx]

I haven't had the procedure done myself, but I have read the post-surgery reports from many who have.  The stents used are not drug-eluding, and are made of a non-ferrous metal (nickel or titanium or an alloy of the 2).  And patients do have to go on blood thinners (I think Coumadin is usually used) for a period of a few months. And they have to be very careful of bruising.  After that they are told they should take baby aspirin every day.  Also, the stents are placed in the jugular veins (sometimes in the azygous), not in the brain.  Of course, this is the first time stent placement has been tried in this location, so there are many unknowns.

But this only applies to those having the surgery done at a site in the U.S. (right now there is only one, and it is somewhat under the radar).  The originator of this theory, Dr. Zamboni does not use stents; he only balloons the vein using angioplasty.  From what I understand, there are disagreements about the long-term safety of stent placement in the jugulars, and the viability of the angio.

[panic01]

I am canadian and they aired this this weekend, super excited!

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?hub=TopStoriesV2

[Lulu54]

Wobbly,
thanks for that link.  I just read their material and was chatting with someone else about this ---- I have this question, and perhaps someone knows the answer.

When you have a heart stent, they are usually drug eluting stents (vs metallic stents) and require the patient to go onto a maintenance dose of Plavix (or similar anti-coagulant) to keep blood from *sticking* to the stent and causing blockage.  What is the protocol post-stent for these in the brain?

I am defnitely NOT a fan of plavix - there are tons of side effects, especially bruising at the slightest touch and profuse bleeding if you cut or scrape yourself.  But I should save that rant for the heart forum! :-)

Thanks again wobbly,
Lulu

[opie74]

I guess that this is my question:  If it is minimally invasive surgery, and can even reduce the number of relapses or severity of symptoms, how could it hurt to add this to a standard DMD?

[Quixotic1]

this is suddenly a big topic.  Thanks for adding this link.

Q