Two months out from the surgery - I will be at Stanford this coming week for my follow-up tests.
I thought I would update where I am now as to where I was two months ago.
First, let me say that all of us who have had the surgery are experiencing our "own" recovery. Some things like the shoulder and neck issues are similar, but we are not the same. I think this has to do with where the stents were placed, what kind of stenosis, how large the stents were, and the surrounding muscles, nerves and tissue. I believe it is Jeff who has a small area around the jugs -- his jugs were being squished. My left jugular was flat for over 3 inches -- so, now with the stent, the jugular is requiring more room --it is bigger in diameter. With this in mind, how many of the surrounding nerves and muscles were pushed aside? I think all of this has had something to do with the healing.
Some of the things that I listed for Dr. Dake prior to the procedure:
Tinnitus - no change, still have
Burning between shoulders - there is a change - the burning is concentrated on the left shoulder blade.
Tight left calf muscle - there is a change - my calf muscle is tight when I get out of bed in the morning, but I do not notice it during the day anymore.
"Shock" right side of head at ear level - there is a change - I use to get this at least once a day when I would move my head a certain way. I seldom have the "shock" anymore - it is not gone but it is less.
Weak left wrist and hand - no change
Balance - I am saying no change at this time - I do feel more confident when walking though.
Foot drop - no change
Ankle stiffness - no change
Lifting left knee - small positive change - I can lift the left knee a little bit easier.
There are some things that I did not talk to Dake about because I did not associate with MS.
Lower right backache- I had the backache for about six months prior to the procedure -- I thought it was probably because of age or my exercise. The ache was gone the day after surgery - I have had no recurrance. I am now wondering if my right side was starting to be affected and the procedure stopped the progression. Dake is not sure -- it is too bad that something like this can not be measured. Would this be considered stopping a relapse if I was in a drug trial?
Muscles in left hip - the muscle tone is normalizing - it is not as spastic. I was not on Baclofen, but I was beginning to get more spasticity. Since the procedure, I am moving the "other" direction - less spastic and this is validated by my massage/physical therapist who is quite surprised. She said that it is the first time in three years she has seen a positive change in the muscle tone around the hip area.
Perspiring - darn it, I started to perspire again! I guess this is a good thing, but it is kind of hard to get use to.
Headaches - I use to get a headache which would last for a couple of days when I would go from Denver (5280 feet) to the mountains (7-8000 ft). Two trips this summer - NO HEADACHE!
Walking Most of you know that I wear a WalkAide - I was having some problems walking even with the WalkAide --probably because of the increase hip spasticity. My gait is much smoother now.
Brain fog - I believe it was Randi who mentioned that she did not consider head clarity to be a problem ...I was the same. Again, borrowing from Randi's comments, it is like you just got HDTV. Your old TV was a good TV with clear picture --the HD is brighter with distinct clarity. Since the procedure, I have noticed the clarity
Would I do it again? YES! For me it was a good, sound decision. I know that some will look at everyone's experiences as anecdotal - not hard, scientific evidence. We are only about 3 months into this journey. I would say to those who discourage CCSVI, give us some time - the drug companies get years. I think our little Stanford group has seen remarkable, positive changes. Jeff's Copaxone did not clear his brain fog or help his fatigue - the procedure did; Marie's Copaxone did not help her spasticity (she is now off the Baclofen -YIPEE!) - the Copaxone did not help Marie with her cold hands - the procedure did; Mel's treatment with HyC helped her some, but she is now feeling better with more energy and less fatigue ....these are just a few MS'rs, and it has been only three months! Lew was feeling better until he overworked himself tilling his garden - his bladder issues are better since the procedure. Let's be patient and to quote dear Wobbly, "Be Strong"
I will update again after I get my follow-up test results.
Last edited by Sharon
on Mon Aug 03, 2009 8:44 am, edited 1 time in total.