Author Topic: Just Diagnosed and not sure what direction to take  (Read 7006 times)

Captain Deb

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Re: Just Diagnosed and not sure what direction to take
« Reply #15 on: May 21, 2006, 06:13:11 pm »
Or the Phaser or Melon-baller! ;D
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Just Diagnosed and not sure what direction to take
« Reply #16 on: May 22, 2006, 04:53:04 am »
beam me up scotty!

Of all the options, the best approach is what you feel comfortable with.

If ya don't want xrays, gamma rays or protons fired at ya, then go for the knife and vice versa. If you stress in a watch and wait then don't put yourself through that either.

There are successful results for all treatments - do a bit of research and then go with your gut feel.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

carolk

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Re: Just Diagnosed and not sure what direction to take
« Reply #17 on: May 22, 2006, 08:12:48 am »
Hi Suzy,

    First, keep breathing!  As you'll see, there are many paths you can take--and the good news is that you have some time to think and research.  My small AN was diagnosed as an "incidental finding" 2 1/2 years ago when I had an MRI for another reason.  It was just 3mm then.  I've been a "watch and waiter" and at last MRI (in January) it was 4x4x6m.  I plan to continue watching and waiting with regular MRIs (next one in Jan 07)--hopefully forever! 

   There is a LOT unknown about these tumors, but it does appear that some don't grow or stop growing on their own, however the average growth rate is about 1 to 2 mm per year.  I've sent my MRIs around to several top physicians and have been told by one respected GK practitioner that I could wait until it was 2 cm to do anything--although my doctor here says I should do something if/when it reaches 1 cm.  The good news for me is that, right now, I have no symptoms.  So the prospect of undergoing a treatment that has risks (even to preserve hearing) is not worth it to me at this time.   You might also consider getting an opinion from Dr. Steiner at U Va in Charlottesville, VA--closer to you and a pioneer in GK.  One of my AN support group buddies here just had a VERY positive experience with him.

  all best,
  Carol

tryston

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Re: Just Diagnosed and not sure what direction to take
« Reply #18 on: May 22, 2006, 05:41:19 pm »
Hi Suzy,

I was just diagnosed myself with an IAC tumor about the same size as yours. I hope that you can stay in touch with the forum. It would be great to swap stories at each step. I have done quite a bit of research and have just met with the first surgical team that interested me. I am in NYC and met with Drs Gutin and Selesnick. I'll tell you what: just talking to a professional somehow gave me a HUGE sense of relief. While they didn't really tell me anything I didn't already know; their manner, their experience, and meeting their staff made a huge impact and really put things in perspective for me. They and I agree that surgery is the way to go. I am 37, not crazy about the radiation idea and feel, for me, that the thing is just going to grow. Let's get it out now while I am in the best of circumstances, i.e., age, health, I have insurance, the tumor is small, only symptom present is tinnitus which I'm getting used to and a slight hearing loss that I don't actually notice. Also if this resonates at all: I don't think anyone can make a "wrong decision" in this! I think that if you've sort of done your due diligence, and have educated yourself as much as you can - you've done your job. Also, I find I really need to take days off from it all too. It helps ALOT. Keep posting.
37 yrs old
8 - 10mm AN in left IAC removed 9/12/06
Middle Fossa
Drs. Brackmann & Hitselberger, HEC