Author Topic: Hello Group  (Read 14136 times)

Battyp

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Re: Hello Group
« Reply #15 on: March 17, 2006, 09:06:59 am »
Lar you're too funny!  The Cruise thread has spread to other posts...LOL

Kathleen_Mc

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Re: Hello Group
« Reply #16 on: March 17, 2006, 12:10:20 pm »
Sue: Don't "beat yourself" up about not returning to the doctor for follow up, in the long run even if the tumor had been found it likely would hae not made much difference in the final outcome given the slow growth rate of these type of tumors anyway (and that's IF the doctor had even done the right tests at that time to find the darn thing anyway). These tumors, for some reason, are often the last thing the doctor check for, I had symptoms for at least 4 years before they finally did do an MRI and that's was done only because I lost the feeling in my cheek and they were testing me for MS! Boy were they surprised with what they found! (I had thought for a long time I had some kind of serious brain tumor but couldn't convince me gp of that to get the tests).
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Sue

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Re: Hello Group
« Reply #17 on: March 17, 2006, 05:42:36 pm »
Thanks to everyone for their advice and concern.  It's helpful.  Visited a doctor this morning. We went over the options. With my age and size of tumor I am a good candidate for the gamma knife that Providence Medical Center has in Portland.  He does not advise waiting and he thinks surgery should be my last option. My cousin is a nurse and she called me last night to give me all sorts of advice. She asked me about the doctors and if I'd checked them out and looked at my options and it's my decision and yada, yada, yada.  I told her I go to the doctors that the other doctors tell me to go to, and that my "informed decision" would be about like if somebody told her, "Tomorrow you are going to Mars, which rocket do you want to take? The fast one or the other fast one? But you're going to Mars one way or another, so make a decision!"  The only game in town is at Providence and I'll be going over to talk to the people who will be doing the procedure (along with this other doctor I talked to this AM.)  I will be putting my faith into these people.  I don't want to wait, because that will allow the damn thing to settle in more, and I don't want surgery because the risks are too great, so the only other choice in my area is the gamma knife. My doctor, who is very nice, said that Acoustic Neuromas are the most studied brain tumor and if I had to pick a brain tumor that was the one to get.  I'd rather not pick one, but this one picked me, so gotta deal with it - by trying to kill the bugger.  And in Portland/Vancouver, this is the only weapon. 
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!
Poet Lorry-ate of Goode

Battyp

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Re: Hello Group
« Reply #18 on: March 17, 2006, 05:49:30 pm »
Sounds like you're perking right along Sue.  You know in your gut if the decision feels right and I do agree.  I'd opt for gamma first before surgery.  non invasive before invasive I say.  I had to go the surgery route and wouldn't want to wisht that exeperience on anyone!

Keep us posted!

Sue

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Re: Hello Group
« Reply #19 on: March 17, 2006, 08:47:10 pm »
I'll let you guys know how it all comes out!!  It still is unbelievable to me that I am having this experience. Must be some reason I to have this in my life. Not sure what, but I'll have to be open to learning exactly why....if there is an answer in this universe!   Wow, went all Shirley McLaine on you all.

Cheers ;D

Sue in Vancouver, USA
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!
Poet Lorry-ate of Goode

Captain Deb

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Re: Hello Group
« Reply #20 on: March 17, 2006, 08:48:36 pm »
Sue,
For me, I had to establish what my prioities were and my absolute priority was saving my facial nerve.  I did a lot of research and consulting and I chose surgery at House Ear in LA as giving me the best chance of what I wanted to do. In spite of the risks of surgery like hearing loss (which I got) and headaches (which I got) my facial nerve was totally unfazed, except for a little rash which lasted about 2 years and went away. The outcome for my facial nerve with radiosurgery was not as certain for me as I wanted it to be.  Do your research and keep notes and write everything down and make yourself a file.

We're here for ya!
Captain 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

ppearl214

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Re: Hello Group
« Reply #21 on: March 18, 2006, 10:21:00 am »
Sue,

Like you, I was fortunate to be given many options (micro-surgery vs. radio-surgery vs. radio-therapy). Not many here were in our shoes and actually, for me, having the options was overwhelming for me (see thread about confused and crying in this forum).  GK is such a viable option (I've opted for Cyberknife as it's available here locally in Boston) and hoping that if you go through with it at Providence Medical Center, please never question your final decision and just rock and roll with it.  Sounds like you are in great hands.  Ask as many questions as you can.  Leave no stone unturned.  And if you speak to Shirley Maclain, see if she can forsee my lovelife with my Brit Cheeky Bloke... should I keep him or not! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Sue

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Re: Hello Group/ Cold nose question...
« Reply #22 on: March 29, 2006, 03:19:09 pm »
I have a date for my gamma knife procedure.  Finally.  It's booked for April 18. I have a consult on the 11th, and they are sending me a DVD to look at.  So, things are moving along. I just hope that I don't have too many ill effects afterwards.  I see that some people have had a tough time after their procedure and I suppose many have sailed right through. It's very individual how our bodies handle this stupid thing that happened to all of us.  Just curious, has anyone else experienced the feeling that their nose was really cold??  Seems like this is some weird symptom of this, but maybe not.  ??? 

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!
Poet Lorry-ate of Goode

ppearl214

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Re: Hello Group
« Reply #23 on: March 29, 2006, 03:25:47 pm »
Sue,

Thrilled to hear that things are progressing along... good for you!   Like you and me, we should be confident in our decisions and not 2nd question them... just time to move forward and rock n' roll!

Cold nose?  I live in New England... difficult for me to answer that question during the cold months! ;) :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Sue

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Re: Hello Group
« Reply #24 on: March 29, 2006, 06:09:32 pm »
I got the DVD to look at today plus additional info that the hospital sent. I may feel a little like Darth Vader (my son is a big Star Wars fan), but I guess I can get through this.  If nothing else, this will make for something interesting to say in our Christmas Letter. ;D
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!
Poet Lorry-ate of Goode

Battyp

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Re: Hello Group
« Reply #25 on: March 29, 2006, 06:13:30 pm »
Sounds like you're doing good....keep us posted!! 

lmurray69

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Re: Hello Group
« Reply #26 on: March 29, 2006, 07:21:58 pm »
Hi Sue, I too have a AN mine is 1.4cm now, I have diabetis,well I got it when they found the AN..This little tumor seems to bring out the best in all of us..Oh and by the way I am 54yrs old.. good luck and hope you keep us informed,,Oh it likes your memory too..Capt. Deb has a lot of info and lots of laughter to pass around ..Keep us updated..
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

Battyp

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Re: Hello Group
« Reply #27 on: March 29, 2006, 10:08:22 pm »
lmurray what side is your an on?  I had type 2 diabetes what they deteremined was caused by the an.  After having my AN removed I no longer have diabetes :o)

ppearl214

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Re: Hello Group
« Reply #28 on: March 30, 2006, 09:31:30 am »
I got the DVD to look at today plus additional info that the hospital sent. I may feel a little like Darth Vader (my son is a big Star Wars fan), but I guess I can get through this.  If nothing else, this will make for something interesting to say in our Christmas Letter. ;D

Sue, if you are going to do your Christmas portrait with your GK headframe/Darth Vader look, I want to be on your holiday card distribution list! ;) :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Sue

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Re: Hello Group
« Reply #29 on: March 30, 2006, 06:47:37 pm »
Sue, if you are going to do your Christmas portrait with your GK headframe/Darth Vader look, I want to be on your holiday card distribution list!   

OMG, wouldn't that be funny/scary? 
Thanks, you made me laugh!! :D

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!
Poet Lorry-ate of Goode