Sunday, July 4, 2010

No Stents!?

I find this of interest to those seeking relief of MS symptoms and CCSVI through The Liberation Procedure, venoplasty, angioplasty, or the politically correct term d’jour:

“Since the recurrence of stenosis is so high, it would seem that the use of stents would be an advantage. Venous stents are used in dialysis patients and in other vascular surgery. If a vein will not remain patent on site, the procedure would be useless.”

(Linda Rousay)

“Dr. Hubbard, Does the group you're working with use stents if necessary?”


“I am attending a meeting with Zamboni and Sclafani in New York later this month and look forward to the latest on this and other practical issues.  I've also discussed the stent issue with the three IRs I'm working with all of whom are experienced.  Our view is to start just doing balloons and only go to stents if repeat ballooning fails and even then only after we and others see how commonly this occurs and how often there are complications.  It makes sense to me to go slow, especially since we will be doing 4-9 per week and will thus gain a lot of experience quickly.”

David Hubbard MD

This is my opinion about the use of stents:

This is what one can expect in order to have a minimally invasive procedure, performed daily all over this country, unless you have Multiple Sclerosis and suspect CCSVI .

1. Research the mountains of links, information and anecdotal evidence of CCSVI.

2. Convince your doctor to order the Dopplar, MRV, and/or venogram with the proper protocol. 

3. Get a second mortgage on your home in anticipation of liberation.

4.  Pay for travel and testing. Ride the emotional roller coaster for step#:

5. Wait two to three weeks for test results.(A hellish experience, I can assure you.)

 If you meet all of these requirements and actually have CCSVI  go to step#

6. Prepare to travel again or present yourself for venoplasty.

7.  The procedure reveals strictures which require ballooning of the vein(s). Lesion(s) are resolved and veins drain normally.


8. The vein(s) begin to collapse or re-stenos soon after the procedure. Stents are indicated ,but not available at this time.

9. Repeat steps #3,4, 6 and 7, sometime in the future or suck it up and go home with no improvement of a single MS symptom and the mental breakdown sure to follow.

I understand the need for caution, studies and trials. I also know that I have done my part for MS research and find step #8 unacceptable. Which is one of the reasons I chose to not offer myself up as a guinea pig or research rat. I feel that playing that role for over a decade is time enough. I would have been in the mental breakdown category without the use of stents.

While I appreciate all of the cooperation and work in behalf of those of us with MS and CCSVI, I have to say that I won't be part of a double blind study. I surely won't pay for the privilege. How are we to know who is performing the needed therapy and who is chalking us up research statistics? Those waiting for the studies to show the results they want, will spend several years exposing themselves to more DMD's, progression of the disease and all of the ugly consequences. 

The choices are unacceptable within the options we are "allowed at this time"! Unless of course you open your options to private practice doctors and their teams. Homework is required. Vascular stents have been around longer than the liberation procedure. The location of stent placement and expertise of the IR is crucial. Mine are where they were placed. If they wear out in 10 or 15 years, that's more life as a 'normal' than I've had so far. Maybe I'll be the first 68 to 73 year old to get replacements. By then there will probably be drive through venoplasty.



Cindy said...

Excellent analysis of the ridiculousness of the medical community and its advocates vs the need to advocate for oneself.

Anonymous said...

You nicely summed up the issue. I would add that this doesn’t exactly concenplate often. xD Anyway, good post…

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