Friday, September 24, 2010

CCSVI Revisited

Hi Everyone,
It has been quite awhile since I last posted anything in this blog. For this I apologize.
I had a very busy and rewarding summer. Filled with activities. Back in July, I attended the symposium that Dr. Scalfoni hosted up in Brooklyn. It was well attended by Dr.'s and Patients from around the country and Dr.'s from around the world. The presentations were very informative, allowing us to see and hear how all Doctors doing the same procedure were each doing it just a little differently.
I hosted a dinner party for MS patients and their spouses. 12 people with different backgrounds that all had one thing in common. MS. It was a great evening of good conversation and friendship.
I traveled up to Albany to visit with a Friend, after she had angioplasty there. The next morning I drove up to Montreal for the afternoon.

On to the subject at hand. During the month of Aug. I noticed that there were a few things creeping back into my life that I hoped were gone forever. I was having an increased number of mild headaches, and by the beginning of this week they were getting quite bad. There was difficulty with sleeping, and my right ear seemed to be clogged. There was discomfort in the right side of my neck. I have been saying ever since my first angioplasty that my knees were bothering me. They just hurt.
I didn't want to post anything about this until I had all the facts and could give you the correct lay of the land, as to what was really happening. Had I just re-stenosed, was there a different problem, or was it all in my head. It was time to call and see Dr. Bonn again. We met a couple of weeks ago and it was decided that he would go back in and see what was going on with my veins.

Yesterday was round two angioplasty. Since learning all the different ways that the procedure was being done around the world at the symposium, Dr. Bonn was going to be doing things a little differently. He entered on the left side, and was going to look at the Iliac vein first and then move up to the right, left and azygous veins. I was also going to be sedated 99%, as this is what will done for the patients in the upcoming study.

Now the results of Yesterday. My Iliac vein was 40% constricted, and after ballooning, it constricted even more. Dr. Bonn inserted a stent in this area, a procedure that is commonly done for May-Turner Syndrome. The left Jugular had restenosed a bit, and was stretched back open with a 14mm balloon. the right side had a new area that was not addressed the first time. This area was also opened with a 14mm balloon. My Azygous vein was open and clear.
The whole procedure took about 2hours and I was back in recovery for 4 hours laying flat to allow the catheter area to heal.

TODAY: Once again my headache is gone. The right ear is clear, and the discomfort behind the ear is gone. My knees don't hurt like they did last week. I still have to get out and move around a lot more to see how they are feeling.

So, once again, Angioplasty the treatment for the condition of CCSVI has been a success.
We all have to remember that CCSVI is a condition and the treatment is Angioplasty, it is not a cure. Just as chemotherapy is a treatment for cancer, it too is not a cure. You don't get rid of cancer with one treatment of chemo. So why would we think that one treatment of angioplasty would get rid of our MS.

I promise to be more attentive to posting my progress, good or bad.
I hope this finds everyone in good spirits and health.


  1. Thanks for your news Janet. Very informative. I had angioplasty in July. The Dr. might have missed a few veins in me too. I'll go back to get another MRV.

  2. Thanks Janet,

    I am on my way to Poland and want to accumulate as much info as possible before I go. I will bring this post with me and ask the doctor(s) to read it before they do my angioplasty.

    be well, hugs Joanne

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