11/8/10 - My first report to Dr. Arata

The following is an email I just sent to the doctors at Pacific Interventional to report on how my condition is as of today.

Hello, Jessica,

Dr. Arata told me he would like us to check in at 2 weeks and then beyond as to the status of my progress. Do you happen to have the CD of my procedure yet so I can have it all together? Please mail to the address you have on file for us. Thank you.

As to my progress, the following areas are where I have found improvements:
1) My left leg is significantly stronger in doing things like bending down to pick things off the ground. I used to brace my legs together to do this, and now it is easy to bend and lift.
2) My left leg is significantly stronger in my walking gait. I get spring from the step instead of the foot drop and my foot and legs go through the normal look and feel of a walking step. It does fatigue still though and the foot drop does come back after about 20 minutes of walking. I am still very clumsy if I try to jog and still can’t run.
3) My left foot had been mildly swollen for some time. I couldn’t see the tendons and veins on the top of my foot and my left ankle was larger than the right. This has all gone away. The swelling is gone, I can see my veins and tendons just like on my right foot, and my ankles are about the same size again.
4) My balance, especially when walking in crowds, is significantly improved. It feels like all the stabilizer muscles that control the subtle foot and leg movements to keep me standing and walking, and dodging, have been restored. I can’t say for sure because I don’t know how many of these failed, but it is fair to say these have significantly restored, to the point where I am no longer hesitant to walk in crowds like at a mall or a trade show.
5) My bowel I would say is as close to normal as I can recall. Previously I would not get the signals that a bowel in the colon until the last moment, which would then often be followed by an accident. I began to manage this by making sure I had relieved myself prior to going out during the day. Since I can now feel it inside, I can now move to a bathroom and relieve the situation normally. I think this is normal but like many things with this disease, there may be some other improvements or complications I can report later on.
6) I no longer wake up with a headache. I had told Dr. Arata that I didn’t even realize this was associated, as I thought I was just waking up dehydrated from not having enough water the evening before. I would get up, drink some water and the headache would go away. The headache was never very severe, but certainly did exist. I haven’t had this for at least a week or so.
7) My eyesight seems a little clearer, though I can’t say for certain how much.
8) My breathing seems much easier and fuller/deeper, but again, I couldn’t provide a measurement of how much.
9) I don’t feel dehydrated. Again I don’t have a way to measure this, but it simply feels like water is absorbing better into my body. I feel stronger and more hydrated on less water intake.
10) My leg fasciculation, tremors, and spasticity has greatly reduced. Most mornings when I awoke would lead to a 5-10 second leg shake upon stretching while still supine. Most mornings now I don’t have this, and on the mornings when I do have it (perhaps 2-3 times since surgery), it’s just a second or two.
11) Heat intolerance appears to be greatly improved.

Other Issues I am unsure of or have not improved:
12) Dr. Arata mentioned that sleep difficulty is often associated with the symptoms of CCSVI. I can’t really report any change in my sleep. I have been fortunate to have slept well all my life, and I experienced no change in this after surgery.
13) My bladder control does not seem to have improved as yet. I would say, however, that it has changed. My urine seems to be a different color. Initially it was very dark after surgery which I think was the contrast filtering out, so I don’t count that 2 or 3 day period. However, my urine is now a lot lighter in color and it smells different. I don’t know if it smells better or worse, just different. Perhaps sweeter might be a way to describe it.
14) My left leg tingles a lot more at times when I use it a lot, like yesterday when I did a lot of walking, stretching, wandering the mall, etc. I don’t know if this is good in that things are coming back to life or bad in that it’s like my leg falling asleep.
15) My heart rhythm has been very steady since surgery. When I exercised (mostly swimming) before, my heart had a tendency to go out of rhythm sometimes, and seemed to be worse when I really pushed it. This would also happen if I drank a little too much alcohol. Since the surgery I have been in sinus rhythm. I have swam for exercise twice, used the exercise bike 3 or 4 times. I swam today for 90 minutes and never felt like my heart was going to go out. Today was the hardest I pushed myself since surgery. I don’t know if this is a CCSVI or MS related issue or not, but it certainly seems so to me given the change I have seen thus far.
16) If I put the ball of my foot on a step or slight ridge, 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.
17) I still see varicose/spider type veins on my knees, interior sides. This is still mild, no change.

Thank you again. I will report back in another 2 weeks.

Mike House