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Post by Nicole on Apr 17, 2013 19:04:06 GMT -6
Hello, I am new here and super scared. I was diagnosed with a nerve sheath tumor in 2010 (T12-L1). I had a repeat MRI in January and it seems to have grown from 1.43 cm to 1.77 cm. I have been told by 2 top neurosurgeons in NYC that I should have the surgery to remove this. I would love to hear from anyone who has had this surgery and what their outcomes were. I am completely frightened as I have no idea what to expect nor have I ever had a procedure done of this magnitude. I am a 36 yr old female if that helps. Thank you in advance for reading!
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Post by bikergirl on Apr 22, 2013 6:18:33 GMT -6
Hi Nicole..I had surgery for a benign nerve sheath tumor in February of this year. They removed most of it but had to leave some as it was wrapped to much around the nerve' Before the surgery I could hardly walk . Now there is pain while the nerve heals and from the part that they couldn't remove. The surgery itself was not so bad ..I was up and walking the next day. Once the incision healed I was also much better. I did not know I had had this for years so by the time they got to it, it had grown a lot. Get the surgery done! You don't want to end up with permanent damage! It is a very tech involved surgery ..pretty amazing! If you have any questions just ask ! Good Luck and get it taken care of soon!
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nycjw
New Member
Posts: 1
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Post by nycjw on Apr 26, 2013 13:23:04 GMT -6
Hi Nicole, Sorry to learn about your diagnosis, but don't be frightened. This is very curable. I had operation exactly 10 years ago removing a schwannoma at L12. After 48 hours, I was able to walk. In a week, I was up at the computer desk, and in 3 weeks, I was back to work. Before operation, I had a lot of pain, and could not walk fast without hurting. Now I can walk, run, lift heavy boxes, anything. I am living a life as normal as it can be. I am confident you will do just fine. Very best wishes to you.
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Post by candyapplelady on Jun 26, 2013 21:39:14 GMT -6
I know I'm jumping the gun. My husband is 55 years old and has had leg pain, numbness, tingling and swelling for a few years. Neurologist had diagnosed this as ideopathic neuropathy. Second EMG showed some changes and an MRI with contrast was done. We have not seen the neurosurgeon yet but diagnosis include a meningioma or a nerve sheath tumor at T-12 measuring 1.5cm. We are both worried sick. It's good to know that those of you who have had surgery have had good outcomes. Can you tell me about your symptoms, how you were diagnosed and more about your surgery. Any words of wisdom? How can I comfort my love while we wait for his appointment in 2 weeks!
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Post by jennifer7 on Jul 9, 2013 23:05:47 GMT -6
Candyapplelady, Getting a diagnosis like this is so nerve racking. I am so glad you found this forum before your husband's surgery/appointment. I didnt find it until after my surgery. This is a great resource. Everyone's situation is different and I found after going to three neurosurgeons that their planned procedures for removal of my tumor was different. I was diagnosed after not being able to sleep for over a month because I would wake up in the middle of the night with severe back pain. I would walk around for a while but even with pain killer before bed it would still wake me up. No pain during the day. Didn't realize I was't walking correctly and numbmess in my legs. Also, I could not hold my bladder. MRI diagnosed it after Xray showed nothing. Surgery was very painful for me because they had to drill to get to my tumor and then my back was fused. I dont think that happens often. I am very fortunate that I am able to walk. I have numbness and alot of nerve damage but I can function well enough to play with and enjoy my little kids. The Best thing you can do for your husband is to be there for him to talk if he wants to talk but most importatly be there at all of the doctors appointments. Ask the questions and write everything down. It is so overwhelming to the patient that they don't hear everything. My husband told me things later down the road that the doctor told me before and I don't recall it at all. Hope this helps. Where are you located? Best of luck with your appointment!
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Post by Nina on Oct 9, 2014 16:19:46 GMT -6
Well I have multiple sclerosis was told six months ago I have 2 tumors one T8 one at the L1. Both are mall but it is in continue with the with the spinal cord it is marble shape round well circumvented. Both on the left side and it has been 10 years with these tumors as I remember I was functional until about 9 1/2 years ago my left side has always been the only problem with my illness slowly very slowly and gradually with the AFO weakness on the left side weakness in my hip weakness on the left side I did not know I had tumors. Now I have some symptoms in my back not major but I am concerned that the tumors have weakened my left side significantly. I am an ex-swimmer of 25 years my passion was swimming I am strong in many ways good upper body strength I use a walker. I want the T8 removed as it is touching the spinal cord I don't want to wait for damage neurological damage for more week this it will be too late. What a great site any insight from any experience person would help I am scared now but I may get it removed very soon like late next month thank you so much God bless.
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Post by samuridude on Oct 10, 2014 11:42:20 GMT -6
Hi Nina,
I had a tumor in the same place as you. Mine also made my left side significantly weaker crushing my cord to a paper thin ribbon. You may search my posts for info.
-Good Health
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