April 28th I went on had CCSVI #7. It was a Thursday, so Kathy and I did our standard Vegas to LA trek on Wednesday night, stayed at the Ayers Hotel, and I watched her eat breakfast the following morning as I went on the usual pre-surgery starvation routine. We got to the Renaissance Surgery Center early and we were whisked in fairly quickly. I really like the consolidation that Pacific Interventional has done, offices on the 3rd floor and the surgery center on the first. It's convenient and quite streamlined.
My blockage in the left jugular was about 30% or so, and right and azygos still flowing nicely. There seems to be something about the left jugular, though, in that it wants to clog and also seems to have the more profound effect on my condition overall. We feel it's quite important to get this one open for good.
Procedure was easy this time (remember how awful January 27 was when it was 100% occluded), and I was in and out in about 2 hours. Dr. Arata was so cool and ambivalent (not sure if that's the right word or not), almost if to say, "hey, no problem, you've been through alot, but this is the thing to do and I'm here for you." We joked around a little in pre-op, and he spent some time with Kathy out in the waiting room when we were done.
As has happened every time the veins were opened, the symptom reaction was immediate. We got into the car and Kathy drove, and I immediately noticed it was easier to keep my left leg in the normal seated position around corners instead of having trouble holding it from falling sideways. Still groggy form the procedure, Kathy drove us, and we decided to stop and see our friends in Big Bear who were spending the week at their cabin. Just two hours of driving and resting in the mountains seemed the better option than driving all the way home.
Woke up the following morning and found overall improvement, but not to the level of the original surgery October 26th. Though a little disappointing, I was overall pleased that I felt I had finally hit the bottom and was heading back up in terms of overall recovery.
Our friends were in the process of selecting a contractor to paint their Big Bear cabin, so I offered to help in that process, and to also return to Big Bear in May to supervise the painting crew. We concocted a plan to ride our dirt bikes May 18 through 21, checking on the painters' progress at the end of each day.
May 18 was a nice ride, but I fell over about 15 times because of the weakness in my legs and the difficulty in the terrain. The 19th was a little better at about 5 falls, and I was doing really well on the 20th as we rode along Fire Road 2N10 on the South side of Big Bear. It was beautiful, the terrain was nice, traction was excellent, and we rode for 3-4 hours for our third day in a row.
We met a game warden along the trail and talked to him for awhile about the forest and the trails (we're street legal so these roads are just fine for us), but somehow that 30-45 minutes stop stiffened me up. As we headed back out to finish up the ride, I hit the brakes to round a corner as I had done all day, only this time the back end slid out and next thing I knew I was on the ground, knee and hip joint writhing in pain. My friends helped me up, but I knew I'd hurt my leg pretty badly. I got back on to my bike and we rode back to the cabin, just a couple miles away, and assessed the situation.
It didn't seem that anything was broken, but the medial side of my knee was very tender and sore. We went to Walgreens and picked up some pain killers and called it a night.
The next day I could hardly walk, move, or otherwise. I was feeling pretty roughed up, but we loaded the bikes into the trailer and headed for Arrowhead to find an easy trail to ride. My friends helped me onto my bike, and we did a test ride down an easy trail, and as we came up to a river crossing, I realized there was no way I could make that. the riding I could manage, but my leg was so tender and weak that any fall to my left side would probably have extended the injury further, so we packed it up and headed back to Lake Arrowhead for some lunch at the taco stand overlooking the lake.
Kathy ordered some good knee braces for me and I've been using one for my left leg for the past week, along with a crutch to keep the pressure off. This morning I went swimming for the first time, and it feels a little sore and weak, but I was able to swim and move a little better than I thought I would. So for now, it seems I just had a bad strain. If it doesn't get better, of course I'll have to go see the doctor and see what we've got, but for now, it seems to be improving daily.
It's such a strange feeling. Here I have this disease, but I have to keep trying to do everything I can do, including risking major injury on the bike, to live as normal a life I possibly can. The KTM 525 dirt bike makes me feel so normal, so alive, so capable, something I haven't felt for months, even years, as my legs have deteriorated, and the risk is so worth it. I'm not a crazy rider, jumping and flying around. I'm a trail rider, and I love the views that the world's fastest power scooter can take me up to. The other thing is hobbling around with a knee brace and a crutch from a motorcycle accident is a heck of a lot better feeling than trying to understand why some stupid lesions in my head cause me so much grief. I can focus on healing from an injury as I have so many times, but this disease is just something else.
It's coming up on 6 weeks since post op #7, so it will soon be time to get a Doppler to see if the left jug is staying open, and hopefully I can get off this Coumadin and begin the recovery in earnest.
4/5/11 Mayo clinic Follow Up and a plan.....
I had my blood drawn again the other day and the platelet level is back up to the 190 range. I am kind of thinking the 71 reading was an error in the lab or the sample, or some kind of anomaly such as taking CoQ10 for a week or so, which we learned can react adversely with Warfarin. OK, that's out of the way.
Now we're on the plan to get consistent INR results and scheduling the next procedure to root out my restricted left internal jugular. I am hoping we can do this one outpatient and feel some results right away. So we're working on that.
Next up, my annual visit to the Mayo Clinic was on Monday. I am having Mayo follow the progress of my disease for a few reasons, not the least of which was they diagnosed it when others couldn’t. I also like to have this facility document my disease because I am quite convinced that when I overcome it through all we’re doing on CCSVI and nutrition and exercise, etc., there will be no question about the legitimacy of it.
The results of my brain MRI yesterday showed that there were no new lesions and none had enlarged. Good news indeed. Seems the diet and exercise and juicing has done something to hold that at bay for a few years.
Last year when I told my neurologist him I was considering CCSVI, he seemed quite opposed to it and told me I should only consider it in conjunction with the MS Society studies. He didn’t outright say he was opposed, but I gleaned this from his reaction to a then relatively untested procedure. He’s very educated, very polished and well respected in the MS community, and he wanted to see more evidence.
I think he got a lot of evidence this year, because he told me many of his patients had come to him with CCSVI procedures done. Surprisingly, this year, he was warm to a few things. First, he was warm to the idea that I had the CCSVI done and initially had good results. He encouraged me to go ahead with our plan of raising my INR to therapeutic levels and then rooting it out so we can obtain whatever benefit we’re going to get.
Second, he was pleased that a doctor in the US with an existing vein care practice was now doing the CCSVI treatment. We all know that the amount of science that is going overseas is astonishing, and he seemed to feel the data Pacific Interventional has collected would be legitimate and useable. I told him all what I knew of Dr. Arata and their practice, and it seemed he was interested in speaking with them. He certainly was interested in how things turn out once we get my jugular vein cleared.
Third, he confirmed that if the environment was corrected by the CCSVI procedure and the blood brain barrier problem was resolved, my nerves and the myelin sheath may possibly regenerate over time and I could potentially reverse the disease and gain my functionality back. Might take some time, and may not ever come 100%, but he said it was certainly possible. When he said this, I was astounded. I have had a thousand discussions with a lot of people about this, and that was the first time a doctor in the MS community suggested that I could potentially regain my prior functionality. Quite a shift in mindset, I’d say.
So as I continue to struggle with my symptoms, I now run on some more hope that soon I'll be back to where I was in October after CCSVI #1, and if I can get back to that, this 3 or 4 month delay will be just fine. Hassle now, fine later.
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