2/19/10 Update on My CCSVI Treatment

I’m still going in the right direction. Now that I am getting PT for my shoulders, I can see how much having crunched up shoulders is inhibiting my balance and hence walking. Felt great after 2/13 PT session (shoulder mobilization by PT, exercises) so I went on my first retail expedition in over a year (instead of waiting in the car, getting cell phone updates from Doug on the cookie shelf choices) . Went into a giant plant nursery and pushed the cart all over, looking for Star Gazer lilies. Followed that with a proper Valentine’s Day Anyone with MS will agree romance is a huge indicator of well being, because to get anywhere you need not only less fatigue, but nerve conductivity. Sorry about being vague, I am always torn between being blunt for the benefit of others suffering with MS, and my own bashfulness. I am so looking forward to the day when we are all post-MS victims, and I can be an anonymous person again. But right now I feel a huge weight of responsibility to be public about my progress, because there are only 60 of us who got the treatment at Stanford. We need more brave doctors like Dr. Dake!

My active weekend follows my typical pattern of recouping a shred of ability, and immediately blowing it with over exertion. By Monday shoulders were all locked up and hurting bad, back on Tylenol. Seeing the PT twice a week now. He said it could go up and down like this for several months, but the swings won’t be so wild, as the ligaments loosen up. But as soon as I am past the intense pain, I will be able to put more work into my walking exercises. Already starting that by side-stepping down the hall with the wall for support, to strengthen hip abductors needed to lift leg in walking. Also, I haven’t been to my basement in a couple of years, but over the past week I’ve gone down 3 times, and back up the stairs normally with alternating feet. Before it required left foot first for each step, then drag right leg up.

Overall I am very excited about the continued upward incline in my abilities, and suspect it will take off faster once I am over the shoulder pain.

The Bigger Picture

On the effort to get public attention for CCSVI, I was pleased to help break the story in the US media with the KGO/ABC 7 Interview Doug and I did when I was back at Stanford for follow up. They did both sides of the story, including risks, which is crucial for everyone to be aware of before they pursue intervention. They also got a brief interview with Dr. Zamboni while he was speaking at NYU. I’m looking forward to when he gets to do a full length interview with US media. Keep sending in tips to your local media!

Despite the fact that stents or angioplasty procedure are on hold in the US, it is available overseas, and patients are pursuing it. Just this week I added a doctor in the UK and one in Jordan to my list of resources. They join Dr Simka from Poland in offering CSVI treatment. Doctors in the US may frown on patients pursuing treatment overseas, but I am sure that I would have gone if I had not gotten in under the wire at Stanford.

Progress is occurring in the US, if not at the pace we patients wish for. The conference at Hamilton University of the leading doctors involved in CCSVI research was very important, because there still is no firm consensus among them about stents vs. angioplasty, or the best diagnostic scans to use. If you are considering treatment abroad, you need to ask what methods will be used, if you are found to have venous blockages. The other big news was the release of results on the first 500 subjects screened at Jacobs Neurologic Institute. See the story links on HealingPowerNow.com.