Author Topic: Calling all ANers who live in Colorado  (Read 2675 times)

Nancy Drew

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Calling all ANers who live in Colorado
« on: July 25, 2008, 02:52:53 pm »
Have met several people (three to be exact) on this board who live in Colorado, and they have shared the doctors and facilites they have chosen to treat their ANs.  Just wondering if there are any other CO ANers who would be willing to share their treatment stories, doctors, etc.  Thanks so much.  Nancy Drew
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

leapyrtwins

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Re: Calling all ANers who live in Colorado
« Reply #1 on: July 25, 2008, 06:23:03 pm »
Nancy -

I don't know if you ever requested any information from the ANA, but they have a WTT (Willing to Talk) list that might have some people from Colorado on it.

The WTT list contains email addresses and phone numbers.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Nancy Drew

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Re: Calling all ANers who live in Colorado
« Reply #2 on: July 25, 2008, 06:43:26 pm »
Hi Jan (again),

You are following all around on the board today.  Of course, I am really jabbering today.  It helps with the anxiety.  As for the WTT list, I got one of those from the ANA when I was first diagnosed.  I think I made a comment about this situation earlier, but I will repeat.  Anyway, I called the first person on the list, and the woman I talked to had had a 5 cm AN removed, and she had had some serious complications from her surgery.  She went into all of the details of her surgery, etc, and she never stopped to ask me any questions about my AN.  It was all about her.  Here I was with a 4mm x 5mm diagnosed just a couple of weeks earlier, and I hadn't done any research so to speak of.  This woman scared me to death.  I couldn't get her off the phone until I finally went to my doorbell and rang it and said I had to go.  I immediately tore up the WTT list.  Lorenzo said he thinks the WTT list should give more details about the size of the tumor, what kind of treatment, the doctor etc.  I didn't have anything in common with that woman.  She did call back later and left a message asking why I hadn't called back.  Needless to say, I didn't call her back.  I think this message board is a bit safer for me.  Thanks for the info though.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

ppearl214

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Re: Calling all ANers who live in Colorado
« Reply #3 on: July 25, 2008, 07:13:00 pm »
In  addendum to what Jan noted about those on the WTT list... it is being updated to also reflect those on the list, where they stand with their treatments and if treated, what kind they had, so it will be an easier reference for those that want to hone in on a particular procedure.

Nancy, I'm sorry to hear you ran into that when you used the WTT list. Suggestion would be to let the ANA know. Those of us on the ANA  WTT list (myself included) are pre-screened and have guidelines to follow as well when speaking to someone.  I would believe they would be interested to know of your WTT experience. Please feel free to let them know.

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

leapyrtwins

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Re: Calling all ANers who live in Colorado
« Reply #4 on: July 25, 2008, 07:20:56 pm »
Nancy -

I'm sorry that you had a bad experience with the WTT list.

When I first found the ANA and got my list I contacted all 3 people in my home state (Illinois) and found all 3 of them extremely helpful.  They had a lot of very positive information and I was impressed with each of them.  In fact, that was one of the things that led me to become a member of the list myself.

I can tell you that the ANA has guidelines for those of us on the list and listening to the person who contacts you is one them.  So is not using the contact as an opportunity to describe your own experience in detail.  I can't speak for others on the list, but I only give details of my experience when I'm specifically asked and I try to keep that brief.  

I have heard from those who have contacted me (and it's not just people in Illlinois) that most of the people on the list have had surgery as opposed to radiation.  So, even though I had surgery, I make sure I discuss radiation as an option and tell the people what I know about it.

I don't know if there is a local ANA support group in your area, but lots of members find they are wonderful resources.  So perhaps you could make contact with more people who live near you at a local meeting.

Just a thought,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Nancy Drew

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Re: Calling all ANers who live in Colorado
« Reply #5 on: July 25, 2008, 09:35:01 pm »
Hi Phyl and Jan,

I was looking back at some of my old posts, and I found this one (216) below.  I haven't figured out how to do that blue highlight stuff yet so bear with my cut and paste method!  As you can see I wrote the post on June 13, 2007.  I guess I got the size of the woman's AN wrong--actually 3cm not 5cm like I said above in the other post.  So, if ANA has changed the list by giving more specifics, then I might give it another try.  Luckily the three folks I have met on this board from CO have been very helpful.  Cary gave me the name of his doc who did his GK back in April, and I have an appt. with him on Aug. 6th.  The other two women I met here are having surgery soon--Kathleen and Maureen.  We are going to try to get together in Sept.  Actually found out that Kathleen lives about 3 miles from my house so that is cool.  I think she is leaving next week for her surgery.  So, it isn't as if I am here alone.  Just curious to see if there are other folks willing to share their doc info, etc.

Nancy


216   General Category / AN Issues / Re: ANA WTT (Willing-to-Talk) List available to newbies  on: June 13, 2007, 04:32:17 PM 
Phyl, Just wanted to give some feedback on the WTT list and by all means I do not wish to discourage anyone from finding someone who is WTT.  I was diagnosed with 4mm x 5mm Dec. 2005.  Needless to say it freaked me out when I found out about the AN especially since it was found by accident.  My doctor gave me info about ANA, and I got the packet from them along with the WTT list of people here in Denver.  I called the first person on the top of the list, and to be honest, my conversation didn't go so well.  The woman had a totally different situation than I did, and I couldn't relate at all.  Her AN was like 3 cm when it was discovered, and she had surgery and suffered a whole lot of problems before and after her treatment.  I do admire her very much for what she has been through, but at the same time she pretty much scared me to death.  I hadn't done much research on ANs when I called her so I didn't realize that everyone's AN is different.  I don't know if these people have training as far as the WTT thing goes.  I think it would be helpful if they did.  This woman talked about her situation throughout the 30 min. phone call.  I wasn't able to get a word in.  When I finally hung up the phone (went and rang the doorbell to end the conversation), I was exhausted and very frustrated.  I immediately tore up the list and said to heck with talking to anyone about the AN.  In retrospect I guess I should have tried someone else on the list to be fair.  So, I just wanted to relate my story just in case someone else encounters the same situation.  Maybe this forum is the best for me anyway.  Perhaps a call to ANA would help so they can give better instructions to the WTT person.  Best wishes to all of you especially to those newbies out there.  I think it is normal to freak out initially and over time I think it starts to sink in and you realize that there are a lot of helpful people out there to relate to.  This forum has really been a helpful outlet for me.    Nancy
 
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

 


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