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Author Topic: I think I'm joining your club here  (Read 5148 times)

mojo

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Re: I think I'm joining your club here
« Reply #15 on: October 10, 2007, 11:36:36 am »
I appreciate your thoughts, satman, and I'm doing my best to keep an open mind until we receive the official diagnosis.

I trust and believe in my ENT; his name is Myles Pensak; his CV is online, and unless there is a personality problem with the neurosurgeon (like, for instance if I JUST DON'T LIKE him) I'll trust his recommendation and referral.

In a way, I suppose I'm putting the cart before the horse, but there is SO much about ANs to digest.  It's going to take me until my November appointment to make sense of it all!

Things here are further complicated by the fact that my husband travels often, and having an unconfirmed, preliminary dx will make it much easier for his boss to schedule projects.  If it turns out I don't have an AN, plans can change back to normal.
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satman

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Re: I think I'm joining your club here
« Reply #16 on: October 10, 2007, 11:57:45 am »
As long as you trust thier judgement,things should be ok.
my prayers are with you. hang in there.........
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kicked my little 8cm buddy to the curb-c ya !

Cheryl R

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Re: I think I'm joining your club here
« Reply #17 on: October 10, 2007, 12:14:30 pm »
Dr Pensak has talked at the last 2 AN symposiums( possibly even more but I am only aware of the last 2)     I went to one session of his in 2005 and he seemed very good. 
                  Good luck to you!                         Cheryl R
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Sue

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Re: I think I'm joining your club here
« Reply #18 on: October 10, 2007, 03:55:58 pm »
Welcome Mojo to the Forum.  Looks like you are getting plenty of advice and support already. Is this a great place or what?  :D   We all have a little different path to take on this AN journey.  It's a major detour, isn't it?  Because of my circumstances, my doctors recommended radiosurgery, so I had Gamma Knife.  Perhaps this will be a viable option for you.  Do NOT let the doctors talk you into something you are not comfortable with or don't have all the answers for.  There are risks and benefits with each of the treatments and only you and you alone should decide what is right for you.  If your surgeon does a scare tactic for radiosurgery, then please talk to somebody who has a more balanced perspective on this treatment.  Surgeons are not so inclined to send you off to another doctor - because it is their business to do surgery.  That's the only heads up from me!

As for all the poor unfortunates of many years ago, before modern medicine saved our lives - well..if they didn't die of something else before their AN got them...then the AN got them.  Would not be a very pretty sight, I'm sure.  :(

Take care and best of luck with your decisions, your treatment and eventual recovery! 

Sue in Vancouver USA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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Larry

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Re: I think I'm joining your club here
« Reply #19 on: October 10, 2007, 07:24:14 pm »
Hi Mojo,

I've become very cynical about the docs based on my experience and others on the forum - don't get me wrong, by and large, we are indebted to these guys with their specialist skills. However, I trusted my ent guy - who was also my surgeon. He ommunicated well, comforted me re outcomes but as i realised, he didn't give me the full spiel. Didn't explain the options, didn't tell me to get another opinion. It was - out it comes for you!

well, I didn't do the research or have these wonderful people on this forum to offer advice.

Beware your docs that don't give you the full picture - including surgery v's radiation v's watch and wait. Also, if they don't tell youthe risks about ongoing headaches, balance issues, impact of facial nerve damage, sfc leaks and hearing loss. Sorry, but you need to be aware of all these things before rushing one of the most important decisions of your life.

A number of posters have just gone for it and it has worked well for them, there are also those that it hasn't gone well for.

Laz


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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
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http://www.frappr.com/laz

mojo

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Re: I think I'm joining your club here
« Reply #20 on: October 11, 2007, 06:12:17 am »
Laz, you are exactly right, and that's one of many reasons I'm thankful I found this place.  Knowing what others have gone through will help me ask the right questions.

I'm not sold on either surgery or radiation, and intend to take a small tape recorder to my appointments.  There's always too much to remember and too much to digest.  And just so you know, I try to avoid doctors like the plague, so I'm not going to let anyone talk me into anything that doesn't feel right.

My husband is reading along with me, and since I too often have fuzz on my brain (that's the way it feels, anyway), he's picking up on things that I either miss or immediately forget.   ;)

I hope you're doing well, and thank you for your concern.
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