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Post by samuridude on Nov 30, 2013 11:09:52 GMT -6
Why didn't I know more? Why didn't I know about these outcomes? Would another surgeon have done a better job? I was foolish to think that someone could cut into my wife's spinal cord without any long term affects. What would help me the most would be the knowledge that WE DID THE BEST WE COULD. It would be easier if my wife had a spinal cord injury from an auto accident. But because this was caused by a surgeon- I can't help but think that I chose poorly. One week from diagnosis to surgery... we prayed for guidance but went ahead anyway. We're coming up to a year and I'm afraid the surgery anniversary will be very hard for us. Hi Tom, I didn’t have sugary at the Mayo Clinic and I turned out better then most who did, everyone is different. I'm 53. I didn’t have many options as my sugary was considered a emergency and was operated on 24 hours after MRI. Should of , could of , would of will drive you nuts, don’t think about it. You can't see in the future, no one can.
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Mike
Junior Member
Hemangioblastomas tumor inside spinal cord. Laminectomy at C3, C4, C5. Removed Aug 2011
Posts: 16
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Post by Mike on Nov 30, 2013 14:13:07 GMT -6
I work out 3 times a week. I can now run for 3 minutes on the treadmill I’m not really in any pain just numb. (I take no medication) Hey Mike, I'd use extreme caution while running on a treadmill while numb. I lost my balance a few time while numb just walking and was a very athletic before symptoms. You are right samurai dude. I lose my balance just by looking up at the tv while on the treadmill. I ran for 3 minutes again and almost kissed the tread if it wasn’t for the grab bars. The other night it was so cold I wanted to run to my car from the supermarket but one look at the asphalt and I changed my mind. I’ll keep my running to the tread mill where I can hang on if need be.
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Mike
Junior Member
Hemangioblastomas tumor inside spinal cord. Laminectomy at C3, C4, C5. Removed Aug 2011
Posts: 16
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Post by Mike on Nov 30, 2013 14:21:23 GMT -6
hey everyone I've always been to!d by pt and it that stimulation and weight bearing do a world of good. Velcro, rough material, anything with a rough surface will do to stimulate, but its hard when progress is so slow. I'm nearly 2 years post op, and only now am I getting some feeling back in my right hand, but I have loads of numbness on my left side of my body to deal with. oh ya, maybe a nice massage to stimulate and get the blood flowing will do good, we gotta try anything and not give up hope, I know easier said than done....... Oh man, the thought of putting Velcro in my shoes gives me the willies. This does make sense. I’ll put some on a ball for my bad hand to squeeze.
I'll try this with the B12, Fish oil and exercise. Thanks for the tip
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Post by tommy c on Dec 1, 2013 14:37:49 GMT -6
My wife has significant sensation loss from bottom rib and below. We're ten months post-op and are hoping for improvement. We'll begin taking omega 3 fatty acid into her diet.
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Post by margie04 on Dec 1, 2013 18:33:58 GMT -6
O Tommy sorry for all that you and your wife are going through, my daughter is 18 years old and on June 17th of this year she was dignosed with a tumor wrapped around her spinal cord we ha no choice not even a let me think about it for having surgery it was an emergency surgery due to the tumor being extremely huge, she also lost feelings of her legs it did not affect her hands, arms, etc.. but it did affect her walking, standing, using the bathroom etc.. all the things she used to do on her own. Keep the faith my friend faith can move mountains I know its easier said than done I have to watch my child go through this and I cannot do absolutely nothing just pray and help her to stay hopeful. You and your wife will be in my prayers, lots of hugs to you guys and God bless. keep us posted please.
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Tom
Junior Member
Posts: 11
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Post by Tom on Dec 1, 2013 22:34:45 GMT -6
Why didn't I know more? Why didn't I know about these outcomes? Would another surgeon have done a better job? I was foolish to think that someone could cut into my wife's spinal cord without any long term affects. What would help me the most would be the knowledge that WE DID THE BEST WE COULD. It would be easier if my wife had a spinal cord injury from an auto accident. But because this was caused by a surgeon- I can't help but think that I chose poorly. One week from diagnosis to surgery... we prayed for guidance but went ahead anyway. We're coming up to a year and I'm afraid the surgery anniversary will be very hard for us. Hi Tom, I didn’t have sugary at the Mayo Clinic and I turned out better then most who did, everyone is different. I'm 53. I didn’t have many options as my sugary was considered a emergency and was operated on 24 hours after MRI. Should of , could of , would of will drive you nuts, don’t think about it. You can't see in the future, no one can.
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Post by gordy1 on Dec 1, 2013 23:12:20 GMT -6
Hello everyone. I am new to this site but have a short story to tell. My wife at age 54 experienced low back pain that got progressively worse. Physical therapy didn't help. After two years of pain she had an MRI. There was a six inch tumor inside her spinal cord between her shoulder blades (T5 to T8). This was found on a Tuesday. Thursday we were at a neurosurgeon's office. who scheduled surgery for the following Tuesday (one week after the MRI). We had a second opinion on Friday and this neurosurgeon recommended the first (the one doing the surgery) and said the tumor would "slip out like a hot dog." Post surgery my wife has lost all sensation from the bottom of her ribcage down. She has chronic muscle spasms that are very painful and limit her ability to function. We are ten months post surgery. I can hardly live with myself. I feel I let my wife down. When she needed me the most, I panicked and went ahead with the surgery. I didn't consult the Mayo Clinic nor anyone else outside of our immediate city. I had no idea all of these complications would occur. I wasn't prepared for this outcome and daily think "what if" we had flown to the Mayo Clinic or some other Medical Center that did a lot of these surgeries. Now I feel we're trapped in a life we didn't see coming. Could we have had a better outcome? It kills me to think that we could have IF I had just taken my time and researched everything before having surgery. The neurosurgeon said we'd have a three day to three month recovery period... but we are not recovering. I'm afraid this might be ever ongoing. Why didn't I know more? Why didn't I know about these outcomes? Would another surgeon have done a better job? I was foolish to think that someone could cut into my wife's spinal cord without any long term affects. What would help me the most would be the knowledge that WE DID THE BEST WE COULD. It would be easier if my wife had a spinal cord injury from an auto accident. But because this was caused by a surgeon- I can't help but think that I chose poorly. One week from diagnosis to surgery... we prayed for guidance but went ahead anyway. We're coming up to a year and I'm afraid the surgery anniversary will be very hard for us. Hi Tom, Your story is very similar to the situation with my son, who was almost 4 years old when his tumour was diagnosed (over 2 years from his initial symptoms). I know exactly how you must feel - both my wife and I have been through the same thought processes many a time over the last 6 and a half years. Unfortunately we didn't seek a second opinion (unlike you), so you definitely did better than us in your preparation for the surgery. Our biggest regret was putting faith into medical personnel who (in hindsight) we shouldn't have. But when the surgeon says he's going to fix the problem, you believe them, don't you? I'm not sure if your wife is a complete or incomplete para (my son is a complete T6), but either way, there are specialized exercise based programs that may help you both; if only to ensure that your wife can maximize her current ability, and also regain whatever she can. Try looking into Project Walk in the US (which is where I am assuming you live). You may also want to have a look at some of the SCI-related website forums - I use CareCure (http://sci.rutgers.edu/vb5/) although it is going through a few technical issues at the moment, so you may need some patience! There is also a UK based forum on www.apparelyzed.com/. My preference is CareCure, but only when the recent technical issues are resolved! On a somewhat positive note, whilst my son's surgery resulted in complete paraplegia, he is pain free, which (again in hindsight) he wasn't prior to the surgery. From looking at this forum, there are a lot of people in daily pain from their existing tumour. And whilst you may not think it yet, life should get better for you both, regardless of your current situation. It just takes time, and a degree of acceptance of "this is what we've got, let's make the most of it." Hope something of what I've written helps.
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Post by lw on Dec 3, 2013 10:35:06 GMT -6
Hi Tom,
I totally understand your frustration at the situation you and your wife are in but you are being very hard on yourself. You are not to blame and, from what you have told us, you have done everything in your power to give your wife the best care possible. None of us (thankfully) can see into the future and, had we have known a SCT was round the corner, we may all have done things differently. I understand your doubts about going ahead with the surgery; it is a major operation that often leaves residual pain, nerve damage and various other problems. Sometimes I regret my surgery but look at it this way: what would have happened if your wife hadn't had surgery? The tumour would have continued to grow, probably causing eventual permanent paralysis. At least this way there is a chance of recovery. Ten months is still early days, although it probably feels like a lifetime to you, and your wife could still get significantly better. Is she being regularly monitored by her neurosurgeon? I do hope she is having good follow-up care from the medics.
Give yourself a break. You ARE doing your best and there is still time for improvement. Just try and hang in there.
Take care,
Leah
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Tom
Junior Member
Posts: 11
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Post by Tom on Dec 7, 2013 12:05:05 GMT -6
Gordy 1...
Thank you for sharing your story. I wish you and your son the best life can offer you. I'll check out the websites you recommended. Out of interest, if you feel OK answering this question... You said you put your full faith in medical personnel but you shouldn't have... and that the NS said he'd fix the problem. "Did you feel mislead? Were the surgery risks not explained? Were you given false hope? Was your sons outcome a total surprise to you?" I really interested in the competence of NS addressing this issue- whether or not they try to correct a problem that they have little experience- or know how- in what to do. Perhaps these NS should have referred the Spinal Cord Tumor patients to someone else by saying "this is beyond me, here's who you should see." I'm interested in your response to these questions. Again- all life's best to you, your family and your son. He's ten years old now and what a special age. I'm sure he loves his parents so very, very much.
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Tom
Junior Member
Posts: 11
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Post by Tom on Dec 7, 2013 12:09:57 GMT -6
Leah...
Thanks for your encouragement. I appreciate you saying that I shouldn't be so hard on myself. I'm trying to accept but find myself "putting my head in the sand" in terms of accepting all that has happened. Even reading and using this website can casue a lot of anxiety and "punched in the gut" feeling as I learn of the reality of our situation. But I see all of us are in the same boat and we have to accept, learn and move forward. What else can we do? But the haunting thought keeps returning... "what if?" Within one week in February our lives turned absolutely upside down and I wish, wish, wish I could get over "why did I make the decisions I did (selection of NS- the blind moving ahead without even finding or looking for this site). Nevertheless- it is what it is and I do appreciate Leah your helpful remarks and advise. God Bless.
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