ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: gamesinc4 on March 09, 2014, 12:28:11 pm
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I have a left sided medium sized acoustic neuroma named Annie. She has grown from 18X11.5X9mm to 18X11x11 from 8/13 to 3/14. My Dr is asking me to consider all 3 routes: surgery, gamma knife and stereotatic radiation. I am meeting with the 2 radiation specialists, then back to him (he does surgery with a neurosurgeon) to pick one in May. Any advice? He also thinks Annie might have a tail. Anyone else have a tail running off of their neuroma? I'd love some advice. ???
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Hello, and welcome to our little club!! So you've probably just discovered the hardest part of this whole thing in our AN world, trying to make a decision on what to do with these lil buggers in our heads. I know for myself it was an intense process that I lost a few nights sleep over. Sounds like you are doing all the right things though, getting opinions, doing your research. I found that doing SO much research just made it worse after a while. It's just like swimming, you keep dipping your toes in the water, but you aren't committed until you do that cannonball! I don't anyone on here is qualified to really give you such advice as to what to do. That has to come from you! But the main thing to know is that when you do make your decision and if it feels good for you, then you made the right decision. So don't second guess yourself! I wish you luck as you are going through this! Let us know what you decide. Take care!
Jay
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Deciding was the hardest for me also. I offer the following thoughts. Surgery is for those who just want it out. Radiation is for those who do not want the risks of surgery, and have the patience to wait and see if it worked. It takes time to find out if radiation worked. You might also want to see another surgeon, and ask if Wait and Watch is an option, if you have the patience. Whoever you pick, make sure the person doing the procedure is highly experienced, and has an established record of good results. Keep us posted.
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I agree with the posts above. Not an easy decision. I fell into the "I want it out of my head" camp because constantly thinking about Timmy the Tumor being in there was driving me crazy. Whatever decision you make will be the right one for you.
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It is so very hard to decide on a treatment.I made multiple decisions that went like this first wait and watch,then radiation (proton beam) ,which was denied due to the size and location of my AN,and last but certainly not least surgery.The surgery was successfull and I am now 2 yrs. post OP and tumor free. The decision that you make will be the right one for you and once you have made it the hardest part is over. Find Doctors who have a lot of AN experience and listen to them.Remember we have a brain tumor and it can be fixed. Good Luck. Dave
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Deciding on a treatment option is probably the hardest part of the AN Journey for many of us (myself included). When I heard I had the option of radiation (GK) or surgery, I immediately said there was "no way" I'd be having surgery. Never say never :)
After weighing all the pros & cons, I decided that surgery was the best choice for me. Among other things I just wanted the AN out of my head.
But that's just me - you need to do what you think is best for YOU.
Definitely a hard decision, but once you educate yourself on all the pros & cons associated with each treatment you should be able to decide. Follow your heart, your head, and your gut.
Good luck,
Jan
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Thank you for your generous posts. I'd would love to hear from someone who did not have surgery but opted for one of the radiation treatments.
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Hello,
I had 27 treatments of radiation to help spare my balance and hearing.
I'm doing great so far, but I'm only out 3 months.
If you are interested, please send me a PM message to:
sandyinwisconsin
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My husband chose Gamma knife and is almost 4 weeks out. I dont have a lot of info because we are so new into this but so far its business as usual. He has a little fatigue but I think its because he can't seem to set limits for himself as in hockey 3x a week, biking etc. I think if he were just to take it easy on himself then he may not be as tired. We got the treatment done with Dr. Kondziolka in NYC. Completely routine for them. It was 2.3cm. Lets hope this thing is dying. They really gave us no reason to believe otherwise. Well see them in 5 more months. For us surgery seemed risky and his partner Dr Galfinos said if for some reason it doesnt work, come back and hell take care of it. Good luck to you and you can PM me with any questions
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Hello and welcome!
I landed in the same situation you are in, where once diagnosed, I was given the option of retrosigmoid or translabyrinthine surgery, radiation or wait and watch. It truly was a difficult decision to make. I spent one year researching all my options, speaking with several neurosurgeons and trying to decide which risks I could live with and which ones I couldn't. I have a history of not doing well with anesthetic so facing a 9 hour surgery truly worried me. At the end of my year of research, I realized a decision had to be made. My AN had grown from 1.8cm to 2.4cm. I chose single session Gamma Knife and had the treatment 6 months ago. I felt a great amount of relief once the decision was made and the treatment behind me.
I have some hearing loss, balance and occulomotor issues but nothing I cannot cope with. I continue to work full time and other than needing to pace myself and get lots of rest, I have no complaints. I just had my first 6 month post treatment MRI and will be posting the results in the next few weeks after I see my neurosurgeon.
Please send me a personal message with any questions if you would like more details of my experience. As others have said, do your research, speak to several specialists and choose one who has lots of experience dealing with our little Alien's! You want the best possible odds to be in your favor!
Cathie
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Just for the record: I think radiation is more of an consideration than just wanting to avoid the risks of surgery or for those who have the patience to wait out the results.
While it is certainly not innocent, it has a proven track record for stunting the growth of the cells. There are many variables to consider like the size/location of tumor, age of person, symptoms, etc. And sometimes it's used to stunt re-growth after a tumor is removed surgically.
Also, the technology for radiation is becoming more high tech with the guided imagery scans, etc. So I think if you're a candidate for radiation, check out the latest technologies and leaders in the field, based on its own merit, not compared to the convenience of avoiding surgery.
And keep us posted!
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All good points. For the record, if mine was not so big, I would have done radiation instead of surgery, because the risks in general seemed lower than surgery, and that was an important consideration to me. But it was big, and then I'd have to wait (and worry) about what was happening, was it swelling, etc. I did not have the patience for that, as I would have worried too much. That's how it was for me.
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After doing intensive and extensive online research on ANs and reading all I could on this forum, it was a no brainer (pardon the pun) for me to choose Cyberknife as my treatment of choice because quality of life was at the top of my list. I had read of all the problems surgical patients were having and I simply did not want to go through any of that at 65 years of age. So surgery was eliminated from my options list.
Posts on this forum led me to seek out Dr Steven Chang at Stanford Medical Center and since I live in San Francisco and Palo Alto is only a 40 mile drive away, I went there for my AN. I am only 2 weeks post Cyberknife but so far so good and I am glad that I made the right choice. Stanford is just amazing! Feel free to email me if you would like any additional information.
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:) Had my first of 3 cyberknife treatments today. It was the best decision for me. I appreciate everyone's generous advice and hope to help others as you have helped me.
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Congratulations!! I personally found it a tremendous relief to finally choose a treatment and have the entire process behind me.
Keep a close eye on how you feel after and rest when you need to. While CK and GK are much easier to go through than microsurgery, we do go through our own recovery process.
Cathie.
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I had translab and just had CK at Stanford. Feel great about my decision to go with CK not so much about the translab. Stanford is top notch!
Consult with everyone you can then make your decision based on what you can live with.
Best of luck to you.
Rose