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Post by Todd on Feb 20, 2010 18:09:37 GMT -6
Jason, just realize that it's ok to grieve your situation. to not allow yourself this can cause trouble later. If you feel bad about your situation, talk to someone or do something nice for yourself. I am like you, I have 3 kids and am happy to still be a part of their lives but I can't do what I used to. I can't sit in the stands and watch the games, I can't go geocaching - just yet anyway -, I have a lot of back pain. I think I'd be happy to not have the pain and only have the numbness but some days the numbness gets me down too.
You lost something of your former self, we all have.
you don't have to spend your every waking hours dwelling on it and keeping your eyes on what's important is necessary. But it's ok to feel bad sometimes. it has to be.
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Post by stevieray on Feb 20, 2010 20:47:45 GMT -6
Jason,
It just takes time. Whatever will improve, will improve. I was devastated at first regarding sexual numbness, which I believe was the only place I had this apart from my feet. My right foot was completely paralyzed from the surgery and has recovered 90%. The sex part came back with time and I am so grateful! Its not 100% but so much better than it was. Sorry for your loss of feeling. I hope you get a lot back. It will take time. I think yoga probably helped if you want to try something, but I didn't feel safe to do that until about 18 months after my surgery. It really re-vitalized my whole body.
Steve
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Post by itsallgood on Feb 23, 2010 7:15:10 GMT -6
I had hypersensitivity, especially along my back, but I also had some slight sensory reduction. Due to the hypersensitivity, I couldnt dry off with a towel because my back would explode with pain to the slightest touch. I could barely drive...it was too painful to experience bumps in the road -- ie you know those concrete freeways where your car gallops along..Id have to pull over from pain. 2 years after my operation, I went to a PT who used heat, exercise, a vibrator, and ultrasound to help break up the internal scar tissue. I did this for about 8 months and this resolved the issue. In regards to the sensory reduction, I did have reduced sensivity on my backside, groin, and left leg. This reduction of sensitivity eventually improved overtime. I'm coming up on my 8 yr anniversary. I'm completely active as before, have full sensation, and no longer experience hypersensitivity.
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Post by Tmasgio on Feb 23, 2010 8:06:14 GMT -6
I would like to add just one thing and that in the beginning our level of consciousness is focused above our normal. Meaning that we are focused on the numbness and pain so much that it can consume you. I think this is why most people in the beginning post about the numbness and pain. After awhile your level of consciousness changes to a new normal meaning you dont recognize the numbness or pain as severe because you have adapted over the course of months. Also, most people after awhile do not remember at all what it used to feel like pre-surgery. The body is very resilant and durable and accepts change in time.
I am almost three years out. In the beginning I was severely depressed. During my surgery my son was born via emergency C-section so my wife and new born was in another hospital and my daughter was staying with grandparents. When I went home I felt very vulnerable. I did use some anti-depressants to get me over the hump and I am doing great today. The point is that all of us want it to fit in and be "normal" but what I have come to accept is that I am "normal" and that my kids and wife see me as Dad and husband no matter what. All of us have something different to deal with but I am sure everyone to a degree is happy. This surgery never lets you forget it or put it in the past but instead you just coexist with the injury. The trick is to get along with it and accept that things are different and always will be. That was a tough pill for me to swallow but I have learned to move on and find joy in the things I can do and continue to do. Every day I find a new piece to the puzzle.
Just some thoughts.
Tony
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Post by cindylee on Feb 24, 2010 19:50:37 GMT -6
Hey Jason, I think attitude has a lot to do with what we are able to accomplish. I will never be the same, no matter how I try. I used to be a workhorse. Go from dawn to dusk. After my surgery I was more tired. I still have numb feet/toes. I have two that barely move at all, and I can't really bend them. The cold bothers them and if I am tired and not paying attention they get number and I feel like I could tumble over..I broke my foot one summer because of those dang toes! They told me after my surgery to just keep moving, even if I could not feel anything. And believe me, I coulod not feel much below my waist either. It came back gradually. I had a numb butt for over a year. What helped me was just walking as much as I could. And I had a very short discount membership to a fitness gym. There I did lots of stretches and walked in the pool. To this day I still cannot stretch my toes without cramping up my legs. Some things you just live with. Just keep trying and doing what you do.
It's okay to grieve. I used to get so mad at my legs when they wouldn't go where I wanted them to go. I actually got so angry one time that I started pounding them out of frustration with my fists. A lot of good that did! I could not feel the blows and only made myself more tired. It was tough for awhile.
I thought I was doing really well until I went out on a blind date a few months ago. My date took me to a football game and it involved a lot of walking. Well, this date walked very fast..I was always behind trying to catch up to him...and he knew about my surgery. All he said was :you walk pretty well, a little slow though. Needless to say we had no more dates. I may have felt bad about not keeping up, but I didn't need any more insult!
Everyone works things out in their own way. I wish you well, Jason. Cindy
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Post by bagelcat on Apr 17, 2010 19:46:03 GMT -6
OK...my situation appears to be different from a lot of the stories I read on here. I was like you in attitude - I figured I'd deal with what ever came after my surgery. If I was still here - everything else was gravy.
Here is what I did to try and get rid of the numbness as much as possible. In the week following surgery (while still in the hospital) and then for almost a year afterwards I spent as much time as possible using my legs. Walking with a walker, pushing on the end of the bed when I was lying down, etc. I did this even when I couldn't really feel the activity. My goal was to "remind" my nerves about the pathways that existed pre-surgery.
Here is my non-scientific thought based on my limited understanding of neurology. Nerves don't like to learn new things. You can teach them, but they much prefer the status quo. So, I figured that if I keep behaving as if my legs etc. were normal, then the nerves would do their best to get back to the pathways that existed pre-surgery. If they couldn't go back to "normal" then the nerves would learn a new way just by trying to get the same outcome.
So...I worked as hard as I could to get back to walking, standing, pushing off to stand, etc. For me, it worked. Slowly feeling came "back online", first to my feet, then calves and thighs etc.
Two contradictory cautions. Don't push yourself so hard that you hurt yourself. You did just have MAJOR surgery, so you need to be careful. However, don't be afraid of the occassional twinge or pain. Obviously you don't want to suffer, but sometimes my nerves would "hurt" as they came back "on line". In fact, when the feeling returned last to my bum, I'd be going about my day and suddenly it would feel like I was being pinched in the bum! But after, I would realize that I had a little bit more feeling.
Finally, my recommendations might not work for other people who had different tumors or different surgeries etc. I can only comment on what seemed to help me. I am approaching the 2nd anniverary of my surgery this May and I am 99.9% back to normal. But you may have to find a new normal.
Good luck and thanks for sharing your story! (If you want to hear more about me and my crazy theories - Bagelcat@yahoo.com.)
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Post by Todd on Apr 17, 2010 23:08:47 GMT -6
bagelcat, thank you very much for sharing this. i'm a year out and docs say what you have after a year is what you generally get to deal with. I'm numb from the chest down on my left side but not so much so as to be completely without feeling. It's just dull. the numb butt is the hardest thing to get used to. I did notice recently that if feel like i'm sitting in a stadium at a football game on my left butt. doesn't matter how much cushion I sit on, it still feels this way. I am choosing to believe that this could very well be feeling coming back. It's annoying as hell, but if it mean feeling is working it's way back into my numb areas, then annoying I'll take.
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Post by itsallgood on Apr 20, 2010 21:27:27 GMT -6
it took me a few years to get over numbness and a several additional years to get over hypersensitivity.
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Post by abprops on Apr 21, 2010 6:13:46 GMT -6
Hi Jason & Susan
Its does me good to read your comments and know that I am not the only one who wants more and better if at all possible. Don't sign off Susan your thoughts and suggestions are very much appreciated but it's good to read that you have doubts as well.
Morris
Morris
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Post by tc on Apr 21, 2010 8:16:08 GMT -6
Yes, Susan - Please don't leave us. You've always been a great contributor. Thanks for all your posts in the past. Teresa
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