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Post by annmarie on Feb 24, 2012 21:55:50 GMT -6
I had surgery to remove a schwannoma three years ago at L-4. At that time the surgeon saw a small schwannoma at L-5 but he said if he took it out I would have a foot drop. I have done very well since the surgery and have only taken neurontin for the numbness. Now the schwannoma at L-5 has grown and is crowding the space in the spinal column and is following the L-5 nerve out the foramen. This is causing me a lot of pain and I've been taking pain meds, which I don't feel are good for me. I've been advised that the best thing I can do now is have CyberKnife which is targeted radiation that will alter the dna in the tumor so it won't grow any bigger. Best case scenario it stops growing and I have less pain. Worst case scenario the radiation is too large of a dose and it ends up taking out my L-5 nerve anyway and I end up with a foot drop. Has anyone out there used CyberKnife? If so, how did it go? Were you tired? Did it make the pain worse? I am a new member and hope some people will weigh in on this subject.
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Post by bowtruckle on Feb 26, 2012 7:50:44 GMT -6
Hi - I'm afraid I don't have any advice regarding CyberKnife. I haven't had surgery yet. But if you post this in the general forum (maybe with "CyberKnife" in the subject), I'm sure you'll get some responses.
I didn't think that radiation was generally recommended for benign tumors. Have you had a second opinion regarding the tumor growth at L5? Perhaps you could send your MRIs to Dr. Jallo for his advice. When I emailed him, he was really quick to reply.
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Post by rick81 on Feb 26, 2012 9:46:58 GMT -6
Hey Annmarie im sorry to hear about your schwannoma growing back. Personally i dont know much about cyberknife but if you visit the schwannoma recovery group on facebook you'll find a few people who have had cyberknife and had great results. Maybe you can message them directly to find out their personal experiences, i dont believe you have to have a facebook acct to view the group.
Of course ultimately your doctor will lead you the right way. I wish you the very best.
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Post by bowtruckle on Feb 26, 2012 11:31:54 GMT -6
Hi Rick - Is the name of the group on Facebook "Schwannoma Recovery Group"? I had a quick look but couldn't find it. I'd be interested in reading about people's experiences. Forewarned is forearmed and all that...
Thanks,
Kirsty
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Post by rick81 on Feb 26, 2012 12:51:37 GMT -6
Hey Kirsty yes it is. You should see it when you type it in the search box. In my case cyberknife was not an option, but i do believe its a good option in a small percentage of cases.
I recall reading many of the cases here and in the recovery group on facebook before my surgery. Sometimes its better not to read at all, remember everyones outcomes are different and these tumors are really to be looked at by a case by case basis. Goodluck to you as well Kirsty:)
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Post by bowtruckle on Feb 27, 2012 7:44:13 GMT -6
Thanks Rick.
I'm trying not to let the stories overwhelm me. I'm pretty lucky really, because I'm not in a great deal of pain. So many people on this site have it much worse. I think I've read every post with the word "schwannoma" - so I know you had a whopper! Hope you're doing well now.
~ Kirsty
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Post by rick81 on Feb 28, 2012 16:02:56 GMT -6
Ya i was the same way before i had my surgery, I just kept reading and reading. In the end though most of the posts didnt really pertain to me as my tumor was extradural. Im doing much better thanks life is getting back to normal. Im glad that your not in alot of pain and i hope it remains that ways for you if surgery is a neccesity.
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