This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm nervous about taking from her blog with out her permission.....

"- The 'old' stents had to be removed as well as clots that were starting to form. Balloons were tried again, as the Dr. and I had discussed it before the surgery that since he was going in we should try balloons. Well my veins are just being very difficult and balloons just wouldn't stay open and stents had to be used again. "

Sounds like they were replaced to me.
~r

There is an abnormal venous structure emanating from the right cerebellar hemisphere, and ascending to join the right internal cerebral vein, suggestive of a developmental venous anomaly. No evidence of a cavernoma is seen in this region. There is a second developmental venous anomaly in the left corona radiata, which drains into the left internal cerebral vein. There is a 6-mm cavernoma in the left corona radiata related to this DV A.

Perhaps new stents or stent grafts were placed INSIDE the old ones or in different locations.

Going into the procedure this time was less troubling mentally. I knew all the nurses and doctors and the know me. So hugs all around when I walked in..although I did need my cane this day and I hadn't needed it in a week.

Anyway same as before except.................. The top part that appeard to have been collapsed had totaly shut down blood flow to the vien and the blood was going back up and trying to go around it's old route. (Thus that hot liguid sensations to the heart-NOT anxiety folks, that's your heart not getting the blood back to it. I will be researching that more in depth.)

The 'old' stents had to be removed as well as clots that were starting to form. Balloons were tried again, as the Dr. and I had discussed it before the surgery that since he was going in we should try balloons.

Well my veins are just being very difficult and balloons just wouldn't stay open and stents had to be used again. He moved it up to a higher area in the confluens of the left jugular and the other has been lowered in the clavical area of the jugular.

Well, then the center was collapsing so 2 more were placed center. Neuro-surgery was on stand by just in case, but wasn't needed. Let me tell you, I'm just a difficult case, this is all not usual. Remember how bad my vein was to start? Dried blood clots in a live human body.

This time after the procedure I needed a shot of morphine. The pain in my ear was horrible as well as in my neck. But, I didn't need my cane to walk out of the hospital again! The burning pinching pain that started down my arms and legs again was gone, the pressure that had built up in my jaw and left face is gone again.

Hi again Dr. Sclafani. New idea. How hard would it be to have a neurologist do a basic neuro exam on a libertati before and after the procedure?

I had to do this as part of the clinical trial when Rebif was first introduced -- a quickie, basic neuro exam every month performed by the same medcial professional. It was useful for the trial, for the doctor, and for me.

Take a video of it and you also have material for the new movie.

only by comparing the two groups can we tell how much of the effects was actually due to the treatment.

sometimes the research means well but is not empathic. But science is not empathic, it is raw, unbiased and objective. We need it to sort this out.

i feel your anger and frustration. It is clear to me that you mistrust the medical sciences. when you are on the wrong side of bias, it is infuriating. But who is to say whose bias will ultimately be correct. That is the goal of a trial

I can't agree. I could tell I was on placebo. Any SPMS patient knows when nothing has changed. They'll know, and everybody will chalk it up to science.

Intention to treat? With a well-known proven-impotent psychological bias that's equivalent to no treatment at all? You think this is blinded? It is unethical voodoo of the worst kind. If someone thinks patient bias will be toward treatment, and their bias cures or treats anything, or improves anything, well, I know some cancer patients. Would you like to try convincing *them* that their next chemo course will work if they just believe hard enough, and clap their hands three times? And you'll leave things that way for two years, right?

I know science can be harsh. But to dismount the riders of that horse requires ethics, not lack of science. It requires the spirit and not just the letter of 'do no harm.' Harm can come by inaction as well as action.

Dear Dr. Sclafani,

Thank you for all the support and helpful information you have been providing to us MSers on this site. Your kindness and caring are very much appreciated.

I just read on your post that the IRB, (as part of their approval), has designed exclusions for your research. Anyone is excluded if they have a EDSS of 8.5 - 10.

Dr. Sclafani, what would you suggest the MSers who have a EDSS of 8.5 or higher should do to get the CCSVI testing and treatment - what other options do they have?

Please let me know what these MSers can do.

I look forward to your reply and thank you for any suggestions and guidance you can give me.

Take care and God Bless,
Someday