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Old 03-06-2013, 04:10 PM   #1
Join Date: Feb 2013
Posts: 4
npcooper713 HB User
Nerve Sheath Tumor - Spine

Hi There,
I am fairly new to this. I initially posted in the Spinal Disorder Forum but was directed here. I was diagnosed with a small spinal nerve sheath tumor back in 2010. It measured approx 1.48 cm. It is btw T12-L1. I went for a follow up MRI a couple of weeks ago and it grew to 1.77 cm. It is displacing the conus according to the MRI report. I saw a neurosurgeon 2 weeks ago at Columbia Presbyterian in NYC. He recommended surgery. I have since seen 2 more drs for different opinions. One suggested to watch & wait. The other agreed w/the Columbia dr and wants to operate. I am not really terribly enthusiastic about someone cutting me open in that area. As of right now I am asymptomatic. I am a 36 yr old female with a 3 yr old son. My life is completely hectic and I really don't have time to be out of commission for weeks on end. Plus I am really scared of this surgery. He said he would do a laminectomy and I would be in the hospital about 5 days. I have found that in the past doctors never really tell you what exactly to expect after you have a procedure or surgery. They pretty much give you a textbook answer. I would like to hear from real people about how they felt starting immediately after the surgery and forward. Thank you in advance for reading!

Old 03-06-2013, 05:27 PM   #2
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Re: Nerve Sheath Tumor - Spine

Welcome to the board. No one can answer your question because everyone is different and every surgery is different. The surgeon never knows what he may find until actually in there is no way to account for inadvertent, unintended things that can happen during surgery or in the hospital. So you just have to go by what the doctor tells you but build in plenty of room for contengencies.

I gather the tumor is benign or can they tell? If benign and if you are asymptomatic, I wouldn't rush into it. As your son gets older, it will be easier for you to have the surgery and a longer recovery period, if needed. Although, I just reread your post and see that it is located at T12-L1...did they say if it is impacting the spinal cord? I know the conus is the end of the actual spinal cord and the beginning of the cauda equina it is right near that "in between" junction....

What have the doctors told you regarding the pros and cons of waiting??

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Old 03-06-2013, 05:46 PM   #3
Join Date: Feb 2013
Posts: 4
npcooper713 HB User
Re: Nerve Sheath Tumor - Spine

Thank you for taking the time to reply to my post. I just don't know at all what to expect from this kind of surgery. I have only had open knee surgery to repair a broken patella. And obviously I went through child birth which had its own complications that landed me back in the hospital. But I have no idea what to even expect with back surgery. No one told me all of the complications that could occur with childbirth and I seemed to have had them all. This is benign - it is either a schwannoma or a neurofibroma. It is right at the end of the spinal cord near that "horse tail" you referred to. I am worried about major complications like permanent nerve damage to little things like - how do you go to the bathroom or eat when you have to lay flat on your back for 48 hrs?!

Old 03-06-2013, 06:12 PM   #4
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Re: Nerve Sheath Tumor - Spine

I did some further reading as I don't recall ever seeing anyone with this problem since I've been on the board. It appears that your tumor is still quite small. I would think that it would be better to have it removed at this point rather than risk it growing larger and becoming more adhered to the nerve...but I think you're going to have to figure out which neurosurgeon and hospital/clinic you feel is best and then rely on that surgeon's advice. Your issue is a bit more complicated (or at least, so it seems to me) than most issues we are used to hearing about or experiencing for ourselves.

It could actually be a pretty simple surgery if it truly is a simple laminectomy. Has anyone indicated if this could be done with a minimally invasive surgery or will it be "open?"

My second lumbar surgery was similar to a laminectomy --mine was an open surgery. I was in the hospital overnight. I got home around noon the following day, waited until my husband got me settled on the couch in the den, and went back to the office. The minute the car was down the driveway, I was out in the kitchen making brownies from scratch. I had such a craving for something sweet (steroids affect me that way)...and I felt perfectly fine. But -- and this is the really important part-- you have to follow the surgeon's instructions perfectly, or even a simple procedure can result in a bad outcome.

You won't be able to drive for awhile (usually a couple weeks). You will not be able to bend or twist at the waist, and will have a lifting restriction of about 10 pounds for maybe six weeks...or so. It is possible that you will bounce back quickly -- I just don't know how involved the surgery will be. Generally speaking, if they don't have to cut into bone, it is not as painful.

I would suggest you find the most experienced, best trained surgeon that is available to you. If you have access to NYC, there should be several to choose from. The most important aspect of surgery is the choice of your surgeon....I think!

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