Author Topic: Recently Diagnosed  (Read 3268 times)

cookiesecond

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Recently Diagnosed
« on: May 25, 2005, 11:16:28 am »
I was recently diagnosed with AN. I live in SC but have seen a doctor in Raliegh NC (Dr. Calvin Cunningham).The doctor seems very compassionate. I am readng everything that I can but it is still overwhelming. Does anybody know anything about this doctor or any other neuro-otologists in my area? I am seriously considering surgery.



Thanks for your help,
Lynn

Mo

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Re: Recently Diagnosed
« Reply #1 on: May 29, 2005, 10:36:10 am »
Do your research.  Ask questions on successful surgeries with the tumor of your size, if he has less than 1000 successful, then seek a second oppion.   Choose your extraction method carefully based upone the information the doctor gives you.   Take it home and research it.  Education gives you power over your fears!
My suggestion is to go to the House Ear Clinic web sight.  I had my surgery done at HEI  last Sept.  The info on the site was very helpful and answered aA LOY of questions that I had.
Hang in there.  The feeling of having too much on your plate is VERY NORMAL.  You may want to seek counciling just to have someone to bounce these feeliings off of that isn't affected emotionally by the situation!
Hang in there and keep your chin up!
Mo

karcher

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Re: Recently Diagnosed
« Reply #2 on: June 02, 2005, 02:00:09 pm »
I live in Charlotte and was diagnosed three weeks ago with a 1.2 cm AN.  I met with Dr. Roberts of
Charlotte ENT and he indicated that he normally does micro surgery with Dr. Adamson.  He confirmed
the ~250 procedures.  I am meeting with a radio surgeon next week to discuss that option.  I would be curious to hear about your impressions of Dr. Adamson when you meet him.  I did not have a "warm & fuzzy" feeling from my meeting with Dr. Roberts (mainly concerned about the relative low number of procedures and the fact that he recommended MF even though he has performed very few of them).

Good luck
Keith

Mary 117

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Re: Recently Diagnosed
« Reply #3 on: June 02, 2005, 05:57:57 pm »
Lynn, this is a quick note but I just want you to know how good things can go. I was diagnosed 7 weeks ago( and overwhelmed) with a 1.8cm x 1.4cm AN. I am from Montana and am right now sitting up in LA, California after having the tumor removed (middle fossa) at the house ear clinic 8 days ago. They really are the best. They saved my hearing, I was out of the hospital in 4 days and I am going to have my life back so quickly I almost can't believe it just happened.

My neurosurgeon in Montana told me that sure any neurosurgeon can offer to remove an AN tumor but to get the job done the very best you need to go where they specialise, hundreds and hundreds of surgeries. The nerves that they deal with are so important to your quality of life, the people touching them should be the very best. I think the House Ear Clinic is the best thing in the world. Please check them out. If I won the lottery (assuming I ever bought a ticket) I would give them half my winnings. They have made my life better already and I still have have my head shaved.

Good luck, it will be all right, just research a lot and don't ever let anyone talk you into anything you don't feel comfortable with,
Wishing you good things,
Mary
2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

DetSgt224

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Re: Recently Diagnosed
« Reply #4 on: June 02, 2005, 08:17:41 pm »
Cookie,

How large is your tumor?  How old are you?  Are you in reasonably good health?  These are things you and your doctor should consider before deciding on a treatment option. 
I was diagnosed on May 4th and my tumor is 3 CM; large by standards.  I'm 40 years old and in good health.  The doctor said radiotherapy is too risky as my tumor is pressing on my brain stem and too large to be able to focus the beam in order to avoid causing damage to senstivie tissue.  It is also too large to wait and watch.  My only option is surgery.  If you make that decision then your doctor will have (3) three approaches to chose from; again there are considerations before deciding on which is best for you.  Keep researching and ask as many questions as you can think of.  I'm afraid I don't know anything about your doctor, but make sure you're comfortable with anyone you see before making your final decisions.  Dr. Peter Von Doersten is my Neuro-otologist and Dr. Nick Chandler is my Neurosurgeon.  I'm having surgery at St. Patrick's Hospital in Missoula, MT.  I know the emotions that you are going through right now.  If I can be of help and support to you, please let me know.

Travis