ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kkl on February 03, 2011, 07:50:51 am
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Hi, I had undergone surgery for my AN on my left side (close to 4 cm)last Dec. 16. and I was told that close 90% was removed. The remaining 10% was too close to my brain stem so the doc left it there and we will have to do another MRI in 6 months time to see if GK is needed to control is growth. Am so happy to have found this forum coz it gives me so much information and encouragement.
Am post surgery about 7 weeks and the whole recovery process is so much longer than I anticipated. 1 week after hospital discharge, I felt weak and depressed. Now, I feel a lot better. My left face was paralyzed then and now it's slowly getting some feelings. It's not fully there yet, but am hopeful.
My balance is still off but plan to do some Cawthorne-Cooksey exercise on my own and I plan to walk more. I read from the postings and it seems that most recover from the balance, right?
What I don't see any postings which am experiencing is weaker control of left arm and leg. The leg seem ok once I walk more although I could still stagger from time to time. But my left arm control is weaker, too. Anyone has the same experience? Does that go away? I mentioned to my neurosurgeon that my typing on my left arm/hand is weaker, he told me to just practice more. Anyone has the same journey? Any insights will help.
Thanks a bunch.
Konnie
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Hi Konnie, welcome to Forum. I'm glad you found us.
Our stories are somewhat similar with my surgery having been a year ago next week. My tumor was a bit larger, but severely compressing the brainstem and its location and proximity to various nerves made it necessary to leave 5-10% behind after almost 32 hours of surgery. I had left side facial paralysis, left side vocal cord paralysis and deformation (in part of being intubated for six days), double vision, swallowing difficulties, and range of motion/control issues with my left arm and shoulder and some associated weakness, and of course balance issues. I spent two weeks in ICU and was very weak when I went home.
However, it got better. The more I exercised, rested, exercised more, rested more, and took care of myself, the stronger I got and the more my balance improved. I found Wii Fitness and the accompanying balance board very helpful in improving my balance. I also had five sessions of vestibular rehabilitation (balance therapy) that helped a great deal as well. The primary value of those sessions was being taught how to use my eyes to guide my balance - picking out local horizons orient myself.
My shoulder and arm are still somewhat "weak". By this I mean that the strength aspect is about normal, but it takes more effort and it almost feels like there is a wall or force working against it. Range of motion is about normal, but that wall always seem to be there saying, "I'm not going to let this be easy or let you forget." Strange, but I am not sure how else to describe it. On the other hand, it doesn't stop me from doing anything.
Overall, everything was difficult for the first two months after surgery. It was three months before I went back to work. Looking back, I felt like a shadow of myself for the first several months back in the office.
It is all so much better now. I am sure it will get better for you as well.
I hope this is helpful.
-Tod
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Hi Tod,
Thank you for your reply and encouragement. Somehow you are not a stranger to me as I've been frequenting the forum in the past week and found it helpful and I see a lot of your postings.
Somehow my right arms and legs are back to pre-surgery level but not my left arms and legs (AN affexted side). Somehow they are just a lot clumsier. i can function normally in most circumstances, but it's still frustrating and was wondering if it's temporary or permanent and if any of you had the same situation before.
Problem is when I mentioned to my doc, he didn't prescribe therapy. Same thing with my balance issues. He just said, walk more and I will have it back. Thing is I live and Asia and I don't even know if they have VT clinics here.
konnie
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Konnie,
My VT therapy took place in a regular PT/OT clinic. There were two therapists that focused on the patients that came though with balance problems.
I am not a doctor, so I can't give you too much advice. But, if you can't get a bit more help from your doctor, or can't find another doctor that can help, then I would suggest rest, exercise, repeating until it is better. Not much else you can do. At seven weeks out, you are still very much in the healing stages. As I mentioned, I am a year out and still have some challenges, but the arm is the least of them...it just reminds me.
For exercises, you probably don't need to do anything major. Basic extensions held to the count of 10 for three sets a few times a day. Gradually extend the count of 10 to 30. Soup can exercises - lifting or holding a can of soup in various positions. With any exercises, the key is gentle, smooth movements that stretch and strengthen the muscles and remind the nerves what they are supposed to be doing. Perhaps Yoga or Pilates would be helpful.
Be patient and try not to be discouraged. The body has its own schedule for healing and it doesn't seem to want to share that information with the brain.
-Tod
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Konnie~
I had a "surgery induced stroke" on the table so my whole right side was MUCH weaker...I had to completely relearn how to write, eat, put on make-up, etc...in fact, most things I do with my left hand now. All that said, my Dr. would never really acknowledge that anything was wrong and I didn't get into ANY type of therapy until well AFTER I had gone back to work - well after 3 months!! Understandably, my right side is still weaker, it has gotten better with time...I can tell, but others can't really...
You are still in the early days..give it time...slow & steady wins the race! ::)
K ;D
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I also experienced a weak left side after surgery. My tumor was on the left, compressing the brain stem, and a small piece of my cerebellum was removed with surgery. I don't know if that really had any effect on things or not. The surgeon wouldn't accept that the left side was significantly weaker, but my PT (for vestibular rehab) saw it was significant enough that I needed some OT, and fought for me to get that.
I would say the weakness/lack of control was better after a month (as in, I could walk without holding onto something and could type some with the left hand if I really concentrated), and pretty unnoticable after a few months. Now, over a year later, I only notice every once and awhile that things on the left are still a little "disconnected".
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I have broke no lie....about 10 plates....severalsaucers and many glasses.....drop everything w/ right hand.I do believe my right side is alot weaker and clumsyer.
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I also had weakness on my left side right after surgery. Initially, typing on the computer took a lot of concentration. Sometime within the first year it became much better just from normal daily usage. Now after five years I don't notice any difference at all.
Jean
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I had surgery 3 weeks ago today. I expected hearing loss, facial paralysis and loss of balance. What I didn't expect was the weakness and loss of control on my surgery side. The day after surgery the nurse asked me to sign a form. To my shock I couldn't write my name. I couldn't brush my teeth, cut my food, even push buttons on the phone!
I just started physical therapy, but the therapist thinks I need occupational and speech therapy too. She said occupational therapy deals more with the hand weakness. Walking and exercise do help a LOT as far as balance goes, but I still wobble a lot.
I can't go back to work until I can talk on the phone, write, and type and I'm going crazy at home.
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Hi Doody and welcome!
It'll come back...unforunately, it might take a little time. Therapy is a good step, but also time. Three weeks is not very long at all to be away from surgery!
Listen to your body!
K ;D
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Dear all,
Thanks a lot for all your replies. Guess it's a relief to know that I am not alone. Just like my balance issues, it seems that working on my left arm and leg needs time, patience and practice! I shall try harder:-)
And again, am so glad to have found this forum and you guy!
Konnie (from far away Asia)