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Post by Scared to Death on Jan 6, 2012 20:54:59 GMT -6
Well just less than 3 weeks till surgery, and the waiting is just killing me. Christmas kept me occupied for a bit, but now sitting at home is the worse thing I have had to do. I have not been at work as it is really difficult for me to walk, and sitting in a chair is uncomfortable as well.
Bagelcat, I am happy to hear that you had a positive outcome, and I can only pray that I do as well, but my mind and gut keep telling me otherwise. I have also been having pain in my upper back, around my shoulder blades, that is now causing electric shock pain down my left arm, my fingers are now becoming numb and I have been having severe headaches. My worse fear is that there might be another one in that part of my spine now. What to do? Do I call the NS to let him know? Do I wait and see what happens after my surgery?
Lady of Faith, thanks for the comment. I did want a new life but this was not what I had in mind. . .. lol.. . . . at least I still have a sense of humor. I know things can become a lot worse after surgery and there could be a lot of complications, but what can I do. . . . pray for the best outcome. . . . but it is getting harder and harder each day.
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Post by Todd on Jan 6, 2012 21:15:21 GMT -6
if there was no other tumor in your cord per your last MRI, chances are very slim you have another from the time of that last MRI until now.
here is something to consider, the psychology of all this can't be ignored and with that the possibility of psychosomatic symptoms (yep, I hate it when the doc tells me it's all in my head). Here's why I say that, again, i'm no doc but this is the very first thing my NS asked me when he walked into our first consult, "So, have you discovered a lot more symptoms since you got your diagnosis?" I had. He said it was completely normal and yes, very likely psychosomatic.
it's so frustrating because the reality is bad enough, why does the brain have to get involved and amplify every little sensation until we are crazy with fear? who knows.
just a thought, not a popular one, but a thought nonetheless.
Todd
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Post by Scared to Death on Jan 6, 2012 21:27:44 GMT -6
Thanks Todd for your reply, and I do agree with you, however, the only MRI done was not on the complete spine, but just the lumbar. I have had pain in the middle back for almost as long as the lower back, but it has only gotten worse in the last couple of weeks.
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Post by kansasmom on Jan 6, 2012 21:48:16 GMT -6
I guess these days if I'm asking myself, "should I tell the doc", then I do. Maybe you have an unrelated problem - bad disc or something - no way to know what is going on without having it checked.
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Post by bowtruckle on Jan 7, 2012 10:32:43 GMT -6
I would definitely tell the NS. My tumor at S1-L5 was discovered by accident through a CT scan. When I was referred to a neurologist, I told him that I have suffered from neck pain for years, so he ordered both a lumbar MRI and cervical MRI. It turns out that I have another, much smaller tumor at T1. The NS thinks it could be responsible for the neck pain, but otherwise isn't causing me any other symptoms at this point. Having said that - as Todd has pointed out, I absolutely have the psychosomatic thing going on as well. My hip pain got a whole lot worse after I first met with the NS. I hope that all goes well with your surgery. Hang in there.
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Post by Todd on Jan 7, 2012 20:11:20 GMT -6
really? very strange. usually when they find one of these in a part of your spine you get a whole spinal and brain MRI. I would certainly ask for that to make sure you indeed don't have other tumors or lesions. The presence of multiple lesions might indicate MS which is not something you have spine surgery for as these lesions go away.
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Post by bowtruckle on Jan 7, 2012 22:30:28 GMT -6
I'm in Bahrain Todd - and to be honest, I wasn't that impressed with the neurologist I saw initially. When I asked him whether the tumor at S1-L5 could be responsible for my sciatica and paresthesia, he replied "lots of things can cause sciatica" and kept stressing that the tumor was benign. "Don't worry, it's benign." Well benign can still paralyze me. Grrr! The neurosurgeon I was referred to used to be the head neurosurgeon for the main government hospital here, but he lost his position after he treated protesters in the uprisings last year. So he isn't affiliated with any hospital anymore... I am going to the Mayo Clinic in April, and I imagine they will run more tests (e.g. whole spine MRI and brain) there. No one mentioned MS as a possibility. The neurologist seemed interested in possible neurofibromatosis. The NS thinks that the tumors are likely Schwannomas, so I'm concerned that with more than one, that could indicate Schwannomatosis - a form of NF.
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Post by sandyr on Jan 8, 2012 11:12:56 GMT -6
Sharon--waiting is a killer, we all know. It's hard not to think of the worst. Do tell your NS about your new symptoms. They need to know. A second tumor is a possibility. I'm proof of that-even though I had no symptoms of the second. Your NS might want to do full spine MRI before your surgery if you can stand it now. After your surgery if you can't. It's a loooong time to lay still in the MRI machine.
My second tumor was not found until after my lumbar surgery when I had a full spine MRI. I was in too much pain to lay on my back before. And it was a different type.
Talk to your doc about something to help with the anxiety too. It helped me after I found out I had to go thru the surgery a second time.
Finding something to do with your hands helps too. Do your crochet, knit, do hand embroidery? Having a project to concentrate on can help, especially if it's something for someone else.
Bowtruckle -has anyone commented about disc problems on your MRI? If they haven't, ask them to look for it. Besides my L2-L4 tumor, I also has a deteriorating and bulging disc at L5, most likely because the SCF that keeps your discs healthy had been cut off by the tumor taking over all the space in my spinal column where it normally flowed. When my NS removed my tumor, he also performed a microdiscectomy to relieve the pressure on my left sciatic nerve that was causing my sciatica. I still have some pain but it is a lot better.
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Post by jeffersont on Jan 8, 2012 13:20:15 GMT -6
Dear Newbie!
I pray that you will come through you surgery just fine and have minum down time and side effects.
I remember my surgery very will when I was wheeled into surgery, I remember the doctor telling me when I ask him what the funny looking rack on the operating table was for. He said that I was not going to lie down on the job and he would be talking to me as he did the surgery. He said I would be able to answer the questions he would ask me as he did the sergery.
At the age of 15 then what he told me seem to calm me down, now I am 68 years old.
My prayers and my best wishes Jefferson.
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Post by guest on Jan 8, 2012 16:59:35 GMT -6
Jefferson, thatis a long time ago that you had surgery, Did your neurologist check you via mri to see if you have any regrowth of tumor. You wouldn't think after these many yrs that you would have problems
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