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Post by Todd on Apr 4, 2010 20:01:53 GMT -6
Hey Nick. see a neurosurgeon first. get their opinion. oncologists are for after diagnosis. right now, all anyone knows is that something is in there. the next question to get answered is, "does that something need to come out?" only a neurosurgeon can answer that.
also, don't agree to any biopsy. spinal cord tumors are different than other tumors. any trauma to the spinal cord side effects. if they want to biopsy, then you should have 1 surgery to remove it. they can biopsy after removal.
I want to stress to you this, though. see a neurosurgeon. you will need to do a lot of research on your own. you'll need to take command of your health because if you listen to what this or that doc is going to tell you, you might not be getting the best advice and you might not be getting the best path to fixing this.
see a NS first. let him see your films. ask us any and everything, we've all been through the process and are at various stages of the process.
we're hear to help.
todd
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Nick
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Posts: 26
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Post by Nick on Apr 5, 2010 15:17:54 GMT -6
Again, thank you all for your input and advice. Tomorrow I am going to the orthopedic spinal surgeon, just to follow up. I suspect he wants to tell me what I already know, and that this is not in his discipline. Maybe he might suggest a course of action, I don’t know. I fairly sure my contact with him will be finished tomorrow.
I have already contacted Dr Jallo and am in work on getting another MRI disk to send him and have found a neurosurgeon at UT Southwestern named Dr Morgan that is listed here on the SCTA site. I sent his staff the MRI report this morning; they wouldn’t make an appointment until after he read my MRI report. I suspect he doesn’t take just any case and concentrates on specialized cases like mine, so hopefully he’ll agree to see me.
The question that keeps coming to my mind is the morbidity rates, as I read through Dr Jallos papers listed here on the site; it seemed to me that morbidity was quite high for SCTs.
Anyone have anything to give me some idea of survival rates?
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Post by stevieray on Apr 5, 2010 16:48:52 GMT -6
That may be true for malignant tumors after multiple surgeries, I can't really say definitively, but there is little danger in surviving SCT surgery for a benign tumor.
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Post by stevieray on Apr 5, 2010 16:57:31 GMT -6
My mistake, I guess this translates to damage caused by surgery and that is unavoidable. Some damage is done just by opening the dura, or sheath around the cord, leading to numbness in the buttocks and legs, pretty common amongst us survivors. I know this leads to anxiety about what will happen, they do as little damage to the surronding nerves as possible and for the most part it is a good trade off for avoiding the damage the tumor is going to do as it grows. It is important that the surgeon use monitoring technology so they watch activity on the nerves and pause to allow things to settle down or avoid more cutting if the monitoring tells them they are causing harm. Some of the trauma from surgery you recover from in the months following surgery. It takes the body some time to recover. Most of us got some form of physical therapy afterwards. This is a lot to absorb I know. Keep asking questions.
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Post by Todd on Apr 6, 2010 8:50:44 GMT -6
if morbity = physical issues after surgery (I wasn't sure what "morbity" meant either, thought it meant death), then, yes, I don't know anyone who has come out of surgery better than when they went in. In fact, the research says you get worse before you get better. If you are already having significant deficits before surgery, then perhaps there won't be much change post surgery. things do get better, but it takes time. more time than I thought.
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Post by Tmasgio on Apr 6, 2010 9:09:51 GMT -6
Nick, Your surgery may be very much different than most because your tumor is Intradural and not intermedullary. There is a big difference in recovery from those that have a tumor inside there spinal canal vs. what you have in your Dura. I think you would experience the least amount of neuro side effects as most with Intradural do much better with recovery.
Mine was intermedullary and was quite large so it had to come out. I knew I would not come out the same. There was no way a surgeon can cut into your cord and not cause damage. The benefit to surgery is to stop damage from occuring to your overall function. A surgeons job is to remove the tumor and keep you functional with your Bowel and Bladder and your motor skills. The trade off is that you lose sensory function so the numbness and pain are the constant reminants of the surgery.
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Post by stevieray on Apr 6, 2010 10:57:44 GMT -6
Here is what my surgeon told me: "Death is a minute risk in all surgery, just from the anesthesia. You could be paralyzed but its very unlikely. Your bladder, bowel and sexual function could be affected, but most likely not much and temporary."
Mine were all affected and for the most part recovered. My right foot was temporarily paralyzed from the surgery but came back with physical therapy and time. One thing he failed to mention was balance which without using my eyesight it is pretty much gone. I work on it and it has improved significantly, but balancing on my right foot is very challenging and I use my eyesight to balance for the most part. My right foot is very numb and after 2 years it started tingling pretty bad, I take Neurontin to reduce this sensation.
Steve
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Post by stevieray on Apr 6, 2010 11:17:33 GMT -6
I also want to add that I was able to return to snow skiing after 1.5 years, backpacking after 8 years (probably could have done it sooner) and this year I'm training for a sprint triathlon.
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Nick
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Posts: 26
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Post by Nick on Apr 6, 2010 16:31:46 GMT -6
My tumor is intermedullary, got a good look at it this morning on the MRI. It looks like a little egg sitting in there at C4-5. (Transverse view) Right now I’m not suffering any ill effects from the tumor; all of my symptoms are coming from the pinched nerve at C5-6, hence the minimally invasive spinal surgeon for the pinched nerve.
Before he will work on the pinched nerve he and I agree I need to see the NS.
He suspects and I agree that the oncologist will give me the green light. (Fingers crossed)
Then I go to the NS that I requested he refer me to. (Which he agreed was a very good choice.)
Most likely the NS will want to wait and see with the recurring MRIs. I tend to agree with this after having had input and advice from those on this board.
Then I can go back to him and get C5-6 herniated disk fixed via scope. Providing the NS agrees that the minimally invasive will not cause any problems down the road in case we have to go in and get the tumor.
Last night I was down a bit because I began to think that getting the surgery would cause a loss of sexual function. So this worried me but then I realized I shouldn’t worry about things I’m not facing yet.
That’s where I’m at, feeling a little better and just trying to remain positive.
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Post by betty on Apr 7, 2010 19:55:55 GMT -6
Hi Nick, I'm so glad things are starting to make sense and going in a smoother direction. It's hard not to think about the what if's but I would encourage you to think of all of us who survived without any major issues and hey we are alive. Best wishes, Betty
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