ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: lora on May 24, 2007, 03:05:50 pm
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Well, out of my 4.7 cm or so AN the MRI showed they got about half. The doc wants to go back in using a suboccipital approach this time or maybe go to Memphis or LA to get the rest dealt with--not in a few years like I hoped for but in a few weeks--it is still on the brainstem. Truthfully, I don't know if I can deal with this again. I started out great guns, but am now 6 weeks out and am so dizzy I can hardly walk and the thought of doing all this again makes me cry. I have to debate with myself as to even bother. Has anyone else had to "go back in" and was it easier? Please help...
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Lora,
Sorry to hear that one round of treatment may not be enough. There are several people on this site that have gone through multiple surgeries, as well as people who have had surgery followed by radiosurgery. Take your time in deciding what to do. You had a large AN, so it's not surprising that your recovery is taking a while. Things will get better. Good luck to you.
Regards,
Rob
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Lora,
I am so sorry to hear this. I know it is our great fear. You are definitely in my thoughts and prayers. I pray for peace and wisdom as you face these decisions and lots of love and support to see you through!!!
Please keep in touch,
Lynn
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Thank y'all for your words of support and kindness--only one who is in my boat knows how hard it is to paddle sometimes! Lora
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Dear Lora, please keep us informed about your situation. I guess we all live with the fear of going back in. You had such a big tumor. I'm so glad you're alive and well though! It will all pass; you will get through this. I'm praying for you. Yvette
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It will be ok I had to have two surgeries to get all my AN out, but I only had to wait about 10 days. :( For some reason this seemed like having a baby you just knew you had to have it no matter what. your in my prayers. Good luck and God Bless ::)
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Lora: I went back into surgery for a regrowth 15 years after my initial surgery, the doctor's don't know if possibly there was some of the orginal tumor left behind the first time around and it grew or if I was talented enough to just grow another. I understand your not wanting to go back in but I think I would have liked to not have so many years inbetween. I felt as though I had put it all behind me and I had moved on. I don't think either way is nice though but certainly if I had known that they hadn't gotten it all the first time around I would have been back in there as soon as I could to get it out so I could move on without having it looming over my head (pardon the pun).
Best of wishes for better health
Kathleen
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Some people don't have much choice and certainly need a second surgery but sometimes leaving a tiny piece behind to presrve the facial to it's fullest potential doesn't always mean that the tumor will regrow. I found this article that I found interesting and wanted to share. It just keeps getting more interesting.
http://www.informaworld.com/smpp/content~content=a713653134~db=all
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Lora: read Jim Scotts posts if you can- he debulked his tumor then had gamma knife radiation. I have a 2.5CM ish tumor, it was suggested to me that I debulk with surgery, then do gamma knife. I opted for CK treatment at Stanford as I had some time to research and no brain stem issues like you are facing. Man, you have a big tumor girl- no wonder you are feeling like ..... :'( Take care of yourself and keep us updated on your progress... Love always, Annie
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LORA!!! I wOULD NEVER WANT TO GO BACK! to that Dizzyagain. Keep your hopes up! PRayers are with you.
JERSEY GIRL had to go back too for some type of AN remission, last time I heard she was seeing Shahinian at the start of JUNE and I have not heard from her.
Mine was a large tumor and Shahinian supossedly got it all. Although I am feeling tingle on my tung again.
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Hi, Lora:
Pearchica is correct. If you look at my signature at the bottom of this post you'll see that I had the 'retrosigmoid approach' microsurgery to debulk my 4.5 AN, then underwent 26 radiation treatments (FSR, not Gamma Knife). Because the surgeon avoided disturbing the facial/cranial nerves, I had little-to-no post-op complications. I'm fine, now. I believe the surgery + radiation procedure will become more and more common for dealing with large AN tumors. Trying to 'get it all', as was the case until recently, often caused the surgeon to cut or disturb critical nerves that left the patient with 'damage'. This way (surgery, then radiation) the surgeon can cut down the (big) tumor, cutting off it's blood supply, then use FSR to kill it's DNA. My AN shows definite signs of necrosis, which attests to the efficacy of this approach. My AN symptoms are almost completely gone and my balance is now close to what it once was.
You may want to get a second opinion and not simply accept what this doctor tells you. Frankly, I would question whether you really need a second surgery, with all the possible complications that entails, when radiation is available and proven effective on smaller AN tumors.
I wish you all the best and hope this works out to your ultimate benefit.
Jim