ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: JLR on October 12, 2016, 04:47:56 am
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Here's a question. What would happen if I don't have the surgery. It's Joan here. I'm scheduled for a retro in NYC next month. Tumor is 2.6 2.7 2.1. Close to brain stem Leaning on trigeminal nerves. On meds for that pain. Will it continue to grow. Just want some opinions out there. Thanks much, Joan aka JLR
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Every case is different, but it seems likely it will keep growing. A lot of factors are involved and it may take a long time. Ultimately it depends on your willingness to wait and watch until you have no choice but to have surgery. What have your doctors said?
-Tod
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Thanks very much. Your comments helped by saying I might have no choice re surgery eventually. I will have the surgery. Thanks again. Glad your doing well. JLR
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Good luck,
Feline
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Thank you Feline. Glad your feeling good. JLR
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JLR, have you consulted about radiation therapy? Your tumor size is close to the nominal boundary, but it is worth a consultation if you really don't want surgery. But even then, you might not have a choice ultimately. I had surgery first, was told I had 3 to 6 months to get it done or ultimately face coma and death, and two years later had radiation. My tumor is deep along the brainstem and right on the artery. It was difficult enough to remove the 90% or so that they could within 32 hours, and it started growing again measurably.
If I had caught it earlier when it was closer to the size of yours, I doubt that I would have delayed.
Best of luck to you,
Tod
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Hi Tod, Had radiation in 2010. Had CK. but this xxxxxxxxx radiated tumor started to re grow slowly and is now leaning on the trigeminal nerve causing awful pain. On meds for that. I tried to get it radiated again but turned down as it would swell and cause additional not so good problems. Even sent my scans to Dr. Chang at Stanford who concurred. Thanks much, Joan
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By now you should have had your surgery. Please post as to how you're doing. Your tumor is larger than mine (mine is now 1.7 x 1.3 x 1.1) but since mine is also pressing on the trigeminal nerve I'm having it out. I just posted about the exact date and am doing mine in L.A. at the House. I hope your outcome was good.
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I've just had mine done on November 8th by Slattery and House. Mine was 3.0cm and although technically I had a choice of radiation, it definitely was not recommended. Mine was pushing on the brainstem as well. My face is numb still , but fully functional, and I am now driving again, no balance issues, and no fatigue. House is great.