ANA Discussion Forum
General Category => AN Issues => Topic started by: ash on April 08, 2012, 06:12:54 pm
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I have a 8mm AN in my right ear and was born deaf in my left ear. My specialist recommends radiation since it is growing. It appears that cyberknife has the best chance to save what hearing I have left and felt that I need to find the most experienced physician no matter where he/she is located. From what I found, that doctor is Dr. Chang at Stanford University. I contacted Dr. Chang and after going over my records has accepted me for treatment. The problem I am having is that everything has happened so quickly that I have actually started second guessing my decisions. Are my decisions correct? Can anyone suggest anything that I may have missed or should of done differently?
Sincere thanks to everyone at ANA.
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Ashman, I'm sorry to hear about your diagnosis, especially since you are already deaf on one side. Unfortunately only you can decide what is right for you. If you feel comfortable, and you are happy then you have done the right thing. It doesn't have to be a long complicated journey. I'd say if you found the right path quickly congratulations.
The only suggestion I would make if you really want to get a second opinion, call House and see what they say. They may well recommend that you go with CK. The call and the consult are free. You have nothing to lose.
Good luck and best wishes.
Nikki
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I made the previous post to you about checking out what the House drs say, esp Dr Slattery. You are similar to what a NF2 patient would be. HEI states they have a 75% rate as saving the hearing in a small AN is what has been mentioned at the AN symposium. They would have a better idea by seeing your MRI as to tumor location. It is a hard choice to know what to do when more is at stake. Some drs believe in radiation when already deaf on the other side and some do not. I have been thru this so know how hard it is. I waited till all near deaf to go with surgery and then a cochlear implant a month later. I was already SSD on the other side. I ended up being one of 2 that the dr brought my hearing back so is a very rare happening and something one can not count on even happening. I am risk for more tumors so have to keep watch due to being NF2. I go to Univ of Iowa. You may have a better chance of keeping your hearing if the cause of deafness in your other side is not due to NF2. I wish you well in your decision. Cheryl R
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Hello there!! As far as decisions go, we usually say on here if you go with your gut instinct and if it feels good, then you made the right decision. You case is unique in the fact that you already have SSD, so you may not have as many options as I did. You didn't say when your procedure is going to start, but if you are talking a month or more, maybe you can get another opinion in from somewhere else. Dr. Chang has been mentioned a lot on here, so that's a good thing. Another route to go is to mail in a copy of your MRI CD to House Ear Institute...they do free consults over the phone, and are very reputable. I am a bit biased on House, as they are the ones who performed on me, but they seem to go by the way of surgeries more than radiation, so keep that in mind. It is possible to get overloaded with too much information and still feel confused, so like I said, go with your gut...if you feel rushed, there's nothing wrong on postponing your date a little bit to give you some breathing room. Good luck with whatever you do, let us know what you decide!
Jay
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G'day Bill
Come here as often as you can so we can learn more and other's who come here can also learn from our experiences.
You've got great advice and I'll just add a hug and wish you all the best of wishes that I can muster for you.
Cheers,
Suu xxoo
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Today over-nighted mri's to HEI and Pittsburgh since most recommended I should. I heard Pitt is high on gamma so I figure they will say gamma. I heard HEI is high on surgery but I doubt they will say surgery. Dr. Chang is high on Cyberknife and he has accepted me and that is what I feel is best. All three are suppose to be the best.
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Cool beans! Let us know what the outcomes are! Looking forward to hearing about it!
Jay
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Sunday the 22nd I recieved a message from a doctor at HEI, he said another doctor would be calling me that performs gamma and cyberknife. The doctor at Pittsburgh has not called. Dr. Chang who appears to be the best at cyberknife returned my email in less than an hour.
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G'day Ashman
If someone doesn't call you then please do give them a quick call and say that you're just following-up on a previous call and you're wondering if someone could get back to you please.
This type of call seems to work wonders! ;D
Look forward to seeing how you're going.
Regards,
Suu xxoo