Recovery from surgery

• By gale
• Posted February 8, 2008 at 7:51 pm

Hi Mike,

Congratulations on a successful surgery!


From experience, do not wait for a bed to start some kind of therapy. There are plenty of things she can do on her own. Some examples include: squeezing a roll of gauze with the hand, then pressing down with each finger, even putting something between her fingers and squeeze (side of the fingers). Pick up coins with the affected hand.

Do ankle circles, attempt to lift the leg while lying down and sitting up (leg straight). If she can’t physically move it yet, exercise the mind and think of the leg moving while in position, sitting in bed leg straight reach for the toes without bending the knee (stretching the leg). Sit in a chair with the knee bent in a sitting position, lift the leg then leg extensions. It is easy not to move at all after such a surgery esp. when one side is affected. Atrophy kicks in realllllyyyy fast. The quicker she starts working on rehab, the better the results.

Be sure to clear anything that leaves a question in your mind with the doctor.

Gale

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• By christytaylor
• Posted February 9, 2008 at 8:14 am

Mike,
Sarah, does not know me that I know of, but my name is Christy Taylor and I go to NIH for VHL as well, with tons of others.
I'm glad to hear that her surgery come out fine. That is great news.
I had the same surgery that Sarah has just had done back in July of 2007. They removed the sames from me, the cyst and a tumor from the brain stem. The only problems I'vehad since surgery has been with my left hand and the usage in it. I don't have full control over it yet, when I when to NIH to see Dr. Lonser who did my surgery, we were talking about it and he said that it may be 6 months to a year longer, just going to take time for it to come back everyone is different. When I had this surgery done, he said his self that I should be back to normal in about 2-4 weeks after surgery and back to what I was doing before surgery. Well as I explained to him, when I seen hin, at times now, it is hard for me to cook for my family, due to the left hand staying tight and numb, hard for me to bath myself, drive, and some other things, when will I have the strenght and usage back and as I stated above that is what he told me, it will take time and could be from 6 months to a yaer longerto get it back.
I hope for the best for Sarah. I would suggest that she try some kind of therapy of her own while she is waitingfor a bed in the other hospital. She can try things as lifting her legs up, sitting up in a chair with her knees bent, try bring them into her chest one at a time, as for her hand, she can try and pick up buttons, coins, beans, have her squeese a package with gauge in it, ask them for some therapy putty for her hands and what is called a thera band,which she just takes it and holds it in her hand and lifts her wrist up and down a few times up and then she turns it the other way and lifts her wrist upwards a few times. This is thigns I have done in the past for therapy, some will be hard to start with but just try them and don't let her give up on them make her try before she gives up. Recovery sometimes can be tough but just look at it like this, "atleast we are still here and it may take time to recover good but we don't want to rush things to fast, for we don't want any set backs to come our ways."
I will pray for the two of you and keep you in my pray.
Christy Taylor

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• By Rick
• Posted February 10, 2008 at 3:53 pm

Hi Mike, my name is Rick.
I had a brain stem tumor with a cyst removed in May. Couldn't swallow after surgery so they put a feeding tube in my stomach so I could eat (yummy). Fortunately, that lasted only a couple of weeks then my swallowing returned. I am eating well now.
Both Gale and christytaylor gave great advice for rehabing. They are right, the sooner the better, don't wait! Before I awoke from surgery, the surgeon told my wife that both my right arm and right leg would be affected. Luckily, only my right arm/hand got ataxia, my right leg was fine so I can only relate to the right arm/hand ataxia, not the leg. I also had a great deal of numbness and not much control.

I was told that it would take a year for my arm/hand to be the best it was going to be. It has been just short of 8 full months now and my arm and hand are still improving:-) Lots of numbness is still there, especially in the end of my fingers but that is getting better. My control seems to have improved the most as I continue to do things I didn't even dare to try just a few months ago like using my right hand to clean my right ear with a q-tip! I was fearfull of puncturing my eardrum if I used my right hand for that but I can do it now (I still have to be carefull and deliberate). I can hold things in my right hand better but still have a ways to go with holding and not looking at what I am holding. Improvement is very slow and that makes it a bit frustrating but in the last 1 and 1/2 months, I have had this feeling that my hand is getting better a bit faster.

Because it can be a bit frustrating, it would be the easiest thing to just let it go and wait things out...Don't let your wife fall into that method!! It is very important to always try to use the arm and leg. That is the way to get back the most that she can. As I said in another discussion regarding this issue, use it, use it, use it. The way I look at it, I have a one year opportunity to get it right, if I don't do as much as I can, that one year opportunity will be lost forever.

It was explained to me that there may be some permanent damage and that I might not get "everything" back. That is why it is important to do as much as I can. Even though my arm and hand are improving nicely, my fine motor skills (writing) are still very poor. I use a stamp for my signature at work but i do sign when I use my credit card. That signature has improved but it still is little more than scribbling. I hope this helps with your question and good luck to your wife. Feel free to post with any more questions regarding this matter, I woulb be happy to answer what I can.

Rick

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