ANA Discussion Forum
General Category => Inquiries => Topic started by: Crazycat on January 19, 2016, 07:17:52 pm
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This is a transcription of my surgical report I had originally posted in '07. It was a lot of work to transcribe and should provide an interesting and informative read for those who are new on this forum. It is buried in my archive of writings here and would be a shame to waste by not sharing it with others.
http://www.anausa.org/smf/index.php?topic=5342.msg48050#msg48050
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This is a transcription of my surgical report I had originally posted in '07. It was a lot of work to transcribe and should provide an interesting and informative read for those who are new on this forum. It is buried in my archive of writings here and would be a shame to waste by not sharing it with others.
http://www.anausa.org/smf/index.php?topic=5342.msg48050#msg48050
I just read your surgical report. I have the same team as you just 9 years after you. Mine is quite small and we are awaiting the results of the next MRI to see what our next decision will be.. How was your rehab and would you recommend the MGH team? Thank you.
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Yes I would highly recommend the same team. What's more, Mass General has been rated as the best hospital in the country and its neurological department is among the finest anywhere on the planet. So you're in great hands!
My recovery went as good as can be expected. However, given the size of the growth and the complications it caused, it was a long recovery.
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Thank you so much for the response. As you know if is quite unsettling to have an AN.. Currently, my bugger and I are at an uneasy peace. Next scan is in May..
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You're welcome! And thank you for a civil and polite reply.
Good luck with your situation though I don't think you'll need it. With the team you have at Mass general you're in the best hands. You'll get through it and you'll be alright. Just don't make the same mistake I made: let the thing grow until it's so big that surgery will be the only option because more-than-likely it will only continue to grow over the years. This is what I don't understand about the "watch and wait" philosophy; it's almost like a form of denial. Has there ever been one instance when an AN has stopped growing after being diagnosed? The earlier it can stopped the more likely hearing (or at least some hearing) may be able to be salvaged in the effected ear. This is a question you should ask Dr. McKenna.
There is a woman from the same town I live in also treated at Mass General who I came to know through this forum.
Occasionally I bump into her at the store. Her AN was very small when she was diagnosed and was treated with either Gamma Knife or Cyberknife. Last time we spoke she told me she never lost her hearing in her effected ear and has since gone on to getting her degree while raising a family. That says a lot.
Take care....
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Part of my reason for W&W is to "save up" some cash. Dr. McKenna told me that many don't grow and that a conservative approach to start was our best course of action. IF she grows we'll re-evaluate, but for now, I'm preparing, physically, emotionally and financially. I am trying to not worry about what is going on now because with the current course or watch and wait I can't do anything about her growth. I would like to be able to put it off until next year at this time if I get a choice and she doesn't grow to much. That gives me enough time to squirrel some money away, and prepare.
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Many don't grow? Amazing. That's the first time I've heard that!
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Many don't grow? Amazing. That's the first time I've heard that!
Yes, many don't grow or have pauses in growth that last years. The reason some people don't run right out and get surgery is because the surgery itself often lowers the quality of life.
My AN hasn't grown in years. I have never been in better physical shape than I am now, even when I was in the police academy. I have young children and I work full time. I am not about to risk loosing my workouts, my time with my kids, and my income for a 1cm AN that is not growing. When my kids are grown, when I stop working anyway, IF my tumor is growing, THEN I will get it treated. My goal was to make it 10 years. So, far, I am 20% of the way. Every year I can delay treatment means my kids are a year more self-sufficient and more money squirreled away. Will there be advances in treatment during my WW time, probably. Will there be advances in treatment for the aftereffects of treatment during my WW time, probably.
I think it's a little short-sighted to proclaim WW is some form of denial just because it wasn't a viable option for YOU.
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Everyone has to make up their own mind as to how they are comfortable dealing with the diagnosis no doubt. But to indicate that surgery is the only option to w & w is incorrect. Radiation is the other option that many people choose, and many choose this option before the tumor grows too large as opposed to waiting and hoping it doesn't grow ( which is essentially what w&w is).
And to state that all " surgery itself often lowers the quality of life" is not correct. There are many people for whom surgery is very successful and they recover and are more healthy than when diagnosed. ( many never come back to post on here so they are not accounted for on here). Some do have complications no doubt; however, they are rarely so catastrophic that a good quality of life is negated.
One thing to remember about w & w is that you have to be vigilant with MRIs and have a good Dr interpret them and hopefully the same machine doing them and most importantly, you have to be willing to accept the results you may get after waiting until there is growth and or increased symptoms to act. You may find radiation is no longer an option and you will be forced to have the surgery you didn't want to have to endure. Also hearing may be further damaged during w& w.
To each his own as its most definitely a VERY personal decision that only the patient can make which is the hardest part for most. Some can stand to w& w and hope for the best outcome and others want to act immediately to hopefully minimize damage to nerves and hearing.
Good luck to all still in that part of the journey!
Jane
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Everyone has to make up their own mind as to how they are comfortable dealing with the diagnosis no doubt. But to indicate that surgery is the only option to w & w is incorrect. Radiation is the other option that many people choose, and many choose this option before the tumor grows too large as opposed to waiting and hoping it doesn't grow ( which is essentially what w&w is).
And to state that all " surgery itself often lowers the quality of life" is not correct. There are many people for whom surgery is very successful and they recover and are more healthy than when diagnosed. ( many never come back to post on here so they are not accounted for on here). Some do have complications no doubt; however, they are rarely so catastrophic that a good quality of life is negated.
One thing to remember about w & w is that you have to be vigilant with MRIs and have a good Dr interpret them and hopefully the same machine doing them and most importantly, you have to be willing to accept the results you may get after waiting until there is growth and or increased symptoms to act. You may find radiation is no longer an option and you will be forced to have the surgery you didn't want to have to endure. Also hearing may be further damaged during w& w.
To each his own as its most definitely a VERY personal decision that only the patient can make which is the hardest part for most. Some can stand to w& w and hope for the best outcome and others want to act immediately to hopefully minimize damage to nerves and hearing.
Good luck to all still in that part of the journey!
Jane
I said surgery OFTEN lowers the quality of life, you misquoted me saying "always". "Always" was your word, not mine. Please don't attribute things to me that I never said.
I also never said anything, one way or the other about radiation. Again, you did.
If you read carefully what I wrote, and only what I wrote, it will be clear what I said.
As for WW requiring vigilance, yes, that is the "Watch" part. Otherwise we could call it just "wait". In fact, I think the more "medical" term for WW is "observation" which is synonymous with "vigilance".
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If you comprehended what I had written, I said, "Just don't make the same mistake I made: let the thing grow until it's so big that surgery will be the only option because more-than-likely it will only continue to grow over the years."
In other words, get the thing while it's still tiny enough to qualify to be zapped with Cyberknife, instead of letting it grow to the proportion that surgery is the only option; but, if the doctors say that ANs do not always grow (no one had ever told me) then there is reason to watch and wait. It's just that, in all the years I've participated in this form (11 now), I can't remember one person ever reporting their AN never grew—that is, until ANGUY.
ANGUY, what happened was that you failed to take account of the radiation option, that I brought up initially. Alabamajane was only trying to clarify for you what I was saying.