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Post by crowning on Nov 12, 2010 17:51:54 GMT -6
On Oct.18th my husband walked into surgery to have a ependymoma removed from inside of the spinal cord t6-t7. The surgeon said he would be in hospital for 4 days at most and 2 months at home for recovery. When he awoke from surgery he was numb from the waist down but could wiggle big toes. He thought it was the anesthetic waiting to wear off. That evening he went into huge spasms for 2 hours of excruciating pain which the nurses could not control with drugs. They finally called in a pain doctor who gave him baclafen which calmed them down somewhat. He still has spasms which are controlled by baclafen. Anyways after a horrible uti infection was treated he is now at a rehab center awaiting therapy. The surgeons, specialists etc. cannot tell us how much function he will regain or how long it will take. At the rehab center they seem to be more focused on teaching my husband how to live independently in a wheelchair, then trying to start the therapy treatments to hopefully further his functional outcome. We have been through a nightmare the past month and we still don't know what the future holds for my husband now. He was a 50 year old active man , who worked everyday as a automotive mechanic up until his surgery. We were told that there was only a 3% chance he would be worse than he was before surgery. Pretty good odds we thought. Well, it has obviously not worked out the way we had hoped for, but we are still hopeful he will continue to recover. The loss of bladder and bowel function has been pretty devastating for my husband, fully understandable. He is slowly getting back some sensations inside his legs but still no feeling. He has tingling inside legs, can feel muscle contractions, can lift right leg and kick out from knee down, left side is weaker, and just recently said he could feel inside of left knee. I just pray he will continue to improve, and eventually walk again. He is determined and is working hard at it.One surgeon said he will never walk normally again but he felt he would eventually walk with a cane, but the old cliche is always added. We don't have a crystal ball. Anyways, this is the start of a long hard journey I think, for the both of us. Our lives will no longer be the same.
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Post by jasonohio on Nov 12, 2010 18:08:30 GMT -6
Hi Crowning - I'm sorry to hear about your husband. I don't want to give you false hope, but I don't think you should give up hope either. My surgery was 9 1/2 months ago. I couldn't walk well at first, and had close to zero feeling below my waist after surgery. These things are still improving now. I have little spasms and zingers all the time. Maybe I'm nuts, but I view this as my body trying to return to nornal. My doctor said you can improve up to 1.5 years. Hang in there. Hope it gets better soon. JA
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Post by paul55 on Nov 12, 2010 18:29:55 GMT -6
Hi Crowning
Sorry your husband is having a difficult time! I'm 3 years out of surgery, and about done with recovery. But that is not to say your husband won't gain after that. Some folks have more gain even after 5 years! My neurosurgeon mentioned to me that it would be 18-24 mos before you see any major changes. Neurological healing takes a very long time. From the sounds of your explanation with the different changes with his legs, things are happening with healing! Things will improve! Try to be positive! I agree your lives will never be the same, but you will regain a lot of what you lost!
The forum is a great place to visit and just read, comment, vent, ask questions etc... We have all been there. And we are here for you!
Keep the forum posted on his progress. We are interested!!
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Post by Linda51 on Nov 12, 2010 22:52:34 GMT -6
Dear Crowning,
Sorry to hear this about your husband. Tell him to not give up there plenty of time to get more back. My tumor was larger and higher up and I was told I would be in the wheelchair for 5 years. That did not happen. This was 16 years ago and I saw improvements at 5 years and even 10 years. I am not the same person as I was before my surgery but life goes on and you get use to the new person with time. In the meantime, tell your husband to take it one day at a time and to hang on to hope. He's not alone and when he is able to come online to post. There will be good days, bad days, improvements, set backs, small victories and even time when it seems like you have just stop and can't get it back. The first 18 to 24 months will tell alots but even then it doesn't stop. Life can be hard but it worth fighting for.
Make sure you take care of yourself as well. Thoughts and prayers to all of you.
~Linda
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Post by Todd on Nov 13, 2010 0:51:41 GMT -6
after surgery, the spinal cord is very swollen. the fact that he has made some gains in getting sensation back is a very good sign. it can take quite a long time for the swelling to go down and even longer for the cord to heal.
if I could give you any advice it would be get him into a therapy situation where they are focused on getting him up and walking and not focused on the wheel chair. I got the same treatment in the hospital, they stuck me in a wheel chair and had me learn how to use it even though I could walk.
getting better means being aggressive about therapy.
what doc and hospital was the surgery done?
Todd
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Post by crowning on Nov 13, 2010 0:52:44 GMT -6
Thank -you all for your good thoughts and wishes for my husbands recovery. I talked to him this evening, we have to communicate by phone because we are 6 hours away from each other, and he is not sounding well. He is frustrated because his focus is on getting things done. He wants his therapy to start, but at this rehab center they are slow to get things going. He did discover a gym this evening that he can go to outside of therapy, that is run by volunteers, so when his limited time with the therapists is over he can go there on his own time. His name is Geoff by the way. He is angry now, and my husband never gets angry. He says he will not come home until he walks through the front door. I know this determination will be his fuel for the fire. Now lets see what he can do!
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Post by crowning on Nov 13, 2010 1:05:55 GMT -6
The Surgeon who did his operation is Dr. Paquette, only one of two surgeons who perform this type of surgery in our province of British Coumbia. The operation took place at Vancouver General Hospital and his rehabilitation is at GF Strong, also in Vancouver. It took 7 years of symptoms and pain, and changing doctors( who told him to live with it) to finally be sent to a neurologist, then a MRI to finally find the tumor.
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Post by billanschell on Nov 13, 2010 12:33:07 GMT -6
One other note: His surgeon never should have told him there would be only a 3% chance he would be worse than he was before surgery. I've never seen numbers like that published anywhere!
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Post by jasonm on Nov 13, 2010 14:40:55 GMT -6
3 percent! Im sorry, but does this surgeon think he is God? That makes me angry, Id like to know his reasoning behind that. If I were you, Id like to know how much damage if any he had to do to the spinal cord to get the tumor out.
I had no bladder function prior to surgery and very little bowel. That is the worst so I know how he feels. I had to self cath 3 times a day. At one point I had 1200cc of urine in my bladder and couldnt feel a thing. Thats almost to the point of bladder rupture! After about 3 weeks post op things started to come back as spinal shock started to wear off, although they are not 100%, I at least dont have to cath anymore as long as I take Flomax. Bowels are better but an on going struggle.
Seems like many people who have an incomplete SCI be it a car accident or whatever eventually get out of the wheel chair, I would bet your husband will as well.
I have learned a lot from coming to this forum, things you wont get from the docs, so tell your husband to check it out when he is ready
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Post by Todd on Nov 13, 2010 20:43:58 GMT -6
I am curious as whether the NS used the nerve monitoring device. it would have let the doc know when he was causing trauma to nerves. my NS told me that they monitor the nerves by sending a constant electrical current through your body, if the numbers at the monitor begin going down, then they stop and talk strategy.
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