Since my last blog post I can clearly feel a receding of my improvements, and I have begun to notice something beginning to happen in my left arm. I feel a little bit of numbness and tingling in my left thumb and index finger every now and again. I thought it was from driving or too much computer time, and it still might be, but I wanted to make a record of it so I can remember if it gets any worse.
Anyway, these series of events I think shows 2 things:
1) The CCSVI surgery isn't a placebo. Improving blood flow seems quite profound for us MS folks and I was so thilled with my progress for the first month that it was unconditional proof that I was recovering. I would do the surgery again in a flash, because the improvements and progress so outweight the risks.
2) There is more to keeping our veins open than we thought, and hopefully over time we will really learn what is required to keep these iron deposits out of our heads (assuming that is indeed an accurate theory).
I am not sure what to make of it at the moment, but it does seem that my veins are not allowing the good flow they were. I am in the process of scheduling with Dr. Arata to go and have another MRV and possibly get some blood flow scans, then discuss what we need to do to keep the veins open this time around. I have a stent in my Azygos, which is why I think I still see some improvement, but I think my jugulars have re-narrowed. It's tough to imagine a life with 50 stents in my body, but maybe it won't be that bad. I figure I'll have a few more at least if/when I go to get the surgery done again.
1/3/11 Recovery slowing? Stalling?
I am curious if my blood flow is reducing from re-narrowing or anything else and I am wondering if I should be checked by MRV or other tools. Here's how it's been going lately, now just over 2 months past surgery.
1) My left leg has started to weaken some in my walking gait, and the abduction and adduction and balancing has started to deteriorate a little. I am finding it more difficult to walk as normally as I was.
2) Swelling in my left foot/ankle seems to have come back some. Not to the level prior to surgery, but noticeable.
3) My bowel seems to be returning to pre-surgery condition. I could clearly feel waste in my colon for about 3-4 weeks and evacuate the waste normally, but now I can’t feel it again and the neurogenic condition seems to have returned.
4) Headaches in the morning have crept back, perhaps 3-4 days a week I have a small headache when I awake.
5) My eyesight remains about the same as my previous report.
6) My breathing remains unchanged from last report.
7) My leg fasciculation, tremors, and spasticity are beginning to return a little more than a month ago. Some mornings I wake up and they really shake. This is the only time of day this happens.
8) Heat intolerance I can’t measure as it is pretty cold now and I don’t have much ability to test this.
Other Issues I am unsure of or have not improved:
9) Still no change in sleep
10) My bladder control still has not improved. Smell and color have been consistent since last report.
11) My left leg tingle seems to be gone.
12) My heart rhythm has remained sinus since last report. I have gradually increased the intensity of my swimming workouts.
13) If I put the ball of my foot on a step or slight ridge such as a motorcycle footpeg, my legs (both) will shake. I remember this was one of the original things the neurologist would do to test the involuntary movements of my legs and one of the initial things leading them to believing I had MS. I don’t think this has really changed.
14) I still see varicose/spider type veins on my knees, interior sides. This is still mild, no change.
1) My left leg has started to weaken some in my walking gait, and the abduction and adduction and balancing has started to deteriorate a little. I am finding it more difficult to walk as normally as I was.
2) Swelling in my left foot/ankle seems to have come back some. Not to the level prior to surgery, but noticeable.
3) My bowel seems to be returning to pre-surgery condition. I could clearly feel waste in my colon for about 3-4 weeks and evacuate the waste normally, but now I can’t feel it again and the neurogenic condition seems to have returned.
4) Headaches in the morning have crept back, perhaps 3-4 days a week I have a small headache when I awake.
5) My eyesight remains about the same as my previous report.
6) My breathing remains unchanged from last report.
7) My leg fasciculation, tremors, and spasticity are beginning to return a little more than a month ago. Some mornings I wake up and they really shake. This is the only time of day this happens.
8) Heat intolerance I can’t measure as it is pretty cold now and I don’t have much ability to test this.
Other Issues I am unsure of or have not improved:
9) Still no change in sleep
10) My bladder control still has not improved. Smell and color have been consistent since last report.
11) My left leg tingle seems to be gone.
12) My heart rhythm has remained sinus since last report. I have gradually increased the intensity of my swimming workouts.
13) If I put the ball of my foot on a step or slight ridge such as a motorcycle footpeg, my legs (both) will shake. I remember this was one of the original things the neurologist would do to test the involuntary movements of my legs and one of the initial things leading them to believing I had MS. I don’t think this has really changed.
14) I still see varicose/spider type veins on my knees, interior sides. This is still mild, no change.
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