Okay, everyone – I know, I have been lax in getting an update posted. Some of you have sent me PM’s and others have “publicly” reminded me to update my CCSVI story. Sorry.
So, here goes:
I am a little over five months out from the procedure. I would consider being very close to 100% as far as recovery. As most of you know, Marie, Lew and I really got caught with shoulder and neck issues. I now have full range of motion with little to no pain in the left shoulder. My left arm and hand strength is back to pre-op range.
Now to the MS stuff:
Tinnitus – there has been no change since procedure. I still have the high pitch ringing in both ears (right is worse than the left). Dr. D had said for me , he did not think the tinnitus was related to the MS.
Burning between the shoulders – this has lessened but I would not say that it can be attributed to the stent. My posture has improved – if I keep my neck aligned with the spine, the burning sensation goes away. Typing on the computer for a period of time will cause the burning. Interestingly, the burning is just on the left shoulder blade now.
The “shock” on the right side of my head at the ear level has lessened. I still experience once in awhile. The “shock” happens when I turn my head a certain way. This sensation is something I have had for years.
Weak left wrist and hand – there is a definite change. I am able to use the keyboard with more ease. Prior to procedure my left hand would turn out to the outside edge and the fingers would become stiff. I am typing right now, with all fingers on the keyboard – the left side is “flowing” smoothly over the keys. The strength is hard to measure – I use a test from my neuro. I stretch my left hand out and then resist pushing the fingers down with the other hand. Pre-op my left fingers would bend down – I could not resist the pressure. Now, I am able to keep my fingers from bending.
Balance – my balance is better because my left side is stronger.
Foot drop – no change – still have
Ankle stiffness – no change - I am working on this with exercises, stretching and even some acupuncture.
Lifting and bending left knee - a small, positive change. I measure this by the fact my walking is smoother. I am able to clear my draggy left foot – sometimes.
Lower right backache – the backache has not come back since the day after surgery. This is amazing to me – why would this happen? Dr. D. just shakes his head and says for me to enjoy not having the pain.
Headaches – I did not have a headache all summer – no high altitude headaches when travelling to the mountains, no stress headaches – nada. That was until this past Sunday. I awoke with the old feeling of pre-headache pressure – sure enough by mid-morning I was having a full blown facial pain headache which lasted the usual 36 hours. I’ve decided to not worry about it for now. I will keep monitoring. It could have been from a seasonal flu shot which I had last week. I have informed Dr. D and will keep him updated.
Walking – Woo, Hoo! The changes are so subtle, and yet accumulative. The WalkAide is working better because my left leg is not as stiff. Prior to the procedure, I was really getting worried – I had the Frankenstein – stiff leg shuffle. My trip to China was a challenge because of all the walking tours; I was able to take part in everything --- I doubt that I would have been able with my condition prior to the procedure. Stairs are still a big problem – bending and lifting my knee to clear the rise of a stair is hard – I swing the leg out and hike the hip.
There are other little things that one notices. For instance, in my Pilates class, the left foot would turn to the side when placed in the strap which is on the leg spring. Consistently, for the past month, the ball of my foot is laying in the strap the way it is supposed to. This is huge to me –but, probably not significant to others. It is easier for me to carry a bag of groceries in each hand. In the morning, when I go out to get the paper, I notice that I walk heel to toe (this is without the Walkaide). I would not be able to walk heel to toe for a long distance -- that’s okay --- last year I would not have been able to walk heel to toe for ten feet! I continue to challenge my nervous and muscular system with Pilates, strength training, Feldenkrais, golf, and believe it or not I am trying to juggle with “wicky sticks”.
I am so glad that I decided to embark on this interesting journey. I have met many new cyber-space friends as I forward the CCSVI research . And, of course to all of you, --- I have learned so much from you; not only about MS, but about life----- what a wonderful group!
Sharon
I am not upset about this - would have been surprised if there had been a positive change--happy there are no additional lesions!
