ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: MPF on November 10, 2015, 11:59:14 am
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Hello - newly diagnosed and exploring treatment options. While I had a consult at Mass Eye and Ear and was very pleased with the physician, I would like to consider 2nd opinions in my home state. Tampa Bay area preferred but open to suggestions state-wide.
Many thanks!
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Hi MPF and welcome to this forum .....
If you have not already done so, you might want to check out the anausa.org full web site for additional information. This link will take you directly to the section on selecting a physician, as well as links to state directories. https://www.anausa.org/resources/medical-resources/selecting-a-medical-professional
Keep in mind that the ANA does not endorse any particular physician, but gives you some direction for selecting a physician with extensive experience treating specifically acoustic neuroma.
Also, if you have not already done so, it would be good to send for the free information packet. See: https://www.anausa.org/contact-us
Best wishes and let us know how else we might be able to help you.
Clarice
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Hello. I saw Dr. Agazzi at USF Health and he will be doing my surgery at Tampa General. He has done many surgeries and took the time to meet with me and answer all of my questions. He answered my email questions as well. He was recommended to me by my primary doctor and local neurologists who say he is the best in this area. I am not sure if he does radiation or not. Good luck.
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Hi MPF,
I don't know how close to Gainesville you are,, but at Univ. FL there is a Dr William Friedman who is well recognized.
This may be an option for another opinion if feasible.
Best of luck to you. Clarice also has excellent suggestions as usual.
Jane
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Many thanks to all and good luck Lisa V. Mpf
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Stay away from Dr. Fred Teleschi at Univ. of Miami - he decided to cut my facial nerve even though the tumor 'lifted easily' off the facial nerve - a complete idiot.
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Yes I also would go with Dr Agazzi as well as Bartels Danner and or Allen from Tampa Hearing and Balance. I had translab Sept 1 at TGH for removal of my 2.5mm Left side AN. Very experienced teams and I am so glad they were so close to home as I live in S Tampa
Good luck!
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I am so glad you had a great experience with Dr. Agazzi and Dr. Allen. I feel very confident with them. How are you doing now? I will be having translab on 2-22-2016. I live 2 hours away so will spend the night on Sunday and surgery is on Monday at 7:30.
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Hi Lisav!
I met with Dr. Allen last month & Dr Agazzi this past Monday. I was very impressed with them both. What made you chose surgery or was it an option? Dr Agazzi recommended translabyrinthine for me. Just wanted to see if you had choice to do Cyberknife too & what made you choose surgery. I'm trying to get to a comfortable decision :). It's not easy! I wish you lots of luck on your surgery next week!
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Hi Celeste! Dr. Agazzi recommended the translab surgery over anything else I think because my hearing was almost gone and the tumor was too big for radiation and was already pressing against my brain stem. I felt comfortable with his recommendation after reading the pros and cons of translab and reading other peoples' experiences with it. I also read about every other option and I felt translab was the best choice before I even went to the first appointment with him. Dr. Agazzi also assured me that they will do everything to protect the facial nerve. I am healthy and in good shape and fairly young (I call 47 young) so I think that will help too. My surgery is scheduled for this Monday the 22nd. I am very nervous but I just keep telling myself that I need to do it otherwise it will only keep growing and getting worse so I am keeping a positive outlook. Dr. Agazzi, Dr. Allen and Dr. Agazzi's nurse have answered every crazy question I have asked with patience, have emailed me back and have called back when I have left messages. Right now I think it is just a mental thing of "oh my gosh I am having brain surgery" that I am dealing with. Take care.
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Thanks for the info Lisav! Dr Agazzi told me my tumor was too close to the brain stem to safely radiate. My hearing is already totally gone in that ear too so he recommended translab. He was so patient & answered every question of mine too & gave me his email address. Like you, am 42 years young & in good health & shape so I'm definitely considering going with his recommendation! I'm just scared of the surgery since all I have ever been through is getting my tonsils out when I was 4 and don't remember much of that! Lol I hope that you post updates after your surgery! I wish you the best & would love to hear how your doing. I'm scared too but knowing someone who has chosen the same docs I went to is comforting. I got a great feeling from them both. Dr. Agazzi has a stellar reputation!:)
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Thanks CelesteMarie. I will update sometime next week how I am doing. I am at peace with all of this. I know I need the surgery and Dr. Agazzi definitely knows what he is doing. But if you want to send me some good vibes Monday morning I will take them! :)
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You got it for sure!! :) :)
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Been thinking of you Lisav and hope that all went well with your surgery! Looking forward to your update! I saw on your other post that you used to live in Cleveland. I was born & raised in Canton! My husband and I moved to Sanford in 1999! Small world! Anyway, positive thoughts for you & speedy recovery!
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Hey Celeste just wanted to update you on my surgery. Dr, Agazzi and Dr. Allen were amazing, they got the whole tumor out and didn't compromise any facial function. There were no beds available in nero icu so I went to other one. Every one there was so nice too. Both doctors saw me before going into surgery, when I was in recovery and both days that I was there . Yes that means I am now home. I am still dizzy and off balance so I have a walker. No issues with a spinal fluid leak. I plan on resting and walking a lot. I am truly thankful that my surgery went well and that my recovery so far is good. I think being in good shape and taking care or myself helped too. Please keep me updated about your situation. Thanks for the vibes-they helped!
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That is wonderful news Lisav!! So happy to hear you did so well and are already home!! Sounds like you were well taken care of & both doctors gave you the best treatment and care! Hearing this solidifies my decision to go with them for the surgery. I'm looking at probably July. I need to plan for family coming in, my job, care for my animals, etc. How long were you in surgery? Hope your balance gets better! I lost 77 pounds last year and am in the best shape I have been since high school. I'm glad to hear that helped you as well! Thrilled to hear your results!! Looking forward to more updates :) :)
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Hi everyone. Just a short update to let you all know I continue to improve. I stopped the pain meds yesterday and am just taking Advil. The pain meds made me feel loopy and nauseas. I am still a little dizzy and very tired but feeling better everyday. I was so worried about my surgery but am so glad I put my faith in Dr Agazzi and Dr Allen as well as all of the nurses and other techs who took care of me. I am indebted to them forever. Thank you to everyone for the ongoing support and encouragement. Take care.
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I'm so happy to hear that Lisa!! I hope that you continue to heal and recover smoothly. It's amazing how soon after brain surgery you are off pain meds & doing so well! I so appreciate you sharing your story as I'm very scared & worried myself! I have been emailing with Dr. Agazzi & should have my surgery date soon! I'll keep you posted!
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Surgery date for translab set for July 19th with Dr. Agazzi and Dr. Allen!
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Hi Celeste. Thanks for letting me know of your surgery date. I am a school counselor and have summers off so please let me know when your surgery is near if you need anything at all. I will gladly come and see you at the hospital or your home.......just know I am available. So since I came home I have been doing well. I had a couple crappy days due to getting sick from the pain meds. I got nausea meds from my PCP but ultimately chose to just stop the pain meds all together and am just taking Advil. I continue taking Advil as needed. I
no longer need my walker and am just using a cane. I walked today for 45 minutes and felt good. I have followup appointments with Dr. Agazzi and Dr. Allen on Monday. Overall I am doing well. I can't believe it has only been a couple weeks since surgery. Take care.
I think I told you before but I was very impressed with all of the care I received while at the hospital. Everyone was so nice and respectful.
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Thank you so much Lisa! That is very sweet of you to offer. It's nice you have the summer off! My husband will be with me and our little chihuahua's. We got a hotel within walking distance that is pet friendly. I was so thankful! I am so happy to hear your progress! Being off the walker & the fact that you walked 45 minutes today is excellent! Did the hospital give you the walker & cane or did you have to get that shead of time in case? Some pain meds don't agree with me either with nausea. Glad the Advil is working for you! I'm so happy to hear your doing well. It puts me more at ease and that I made the right decision. I have been very anxious this week with setting the surgery date & all of the pre surgery appointments rolling in! Hearing how your doing really helps me a lot & I appreciate your updates so much! Let me know how Monday goes for your follow ups! Forgot to ask, how long were you in surgery?
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Hey Celeste. My surgery was 5 hours long. I got a walker at the hospital when I left which I will gladly give you if you need it. I remember being very nervous a couple months before surgery about things like not wanting to wake from surgery and throw up, not wanting to be very dizzy, not wanting to have facial paraysis. Days before I stopped thinking about these things and just put faith in the surgeons.
I will let you know how the follow up appointments go tomorrow. I saw that there is a support group meeting on April 30 in Sarasota with Dr. Agazzi presenting...... I have never been to a support group meeting before my surgery.......not sure why but am going to start going now that I can hopefully help someone else.........
Again.....anything I can do to help please let me know.
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Hi Lisa! How did your follow up go? I hope everything went really well for you! Did you have to have stitches removed? Dr Agazzi & Dr Allen both said my surgery would be about 5 hours too! I'll let you know about the walker! I'll ask at my pre-op appt :) it's good to know I'm not alone in feeling so anxious. I think about the craziest things lol!
Sarasota is a little over 3 hours for me, I'm in Sanford. I'll have to see what's going on if I can make it. Would love to meet you in person & hear Dr. Agazzi speak. I can tell you connecting with you has helped me tremendously, I hang on your every word of how things are going for you. It's amazing to have found someone with such a similar situation, same surgery, same docs, etc. I appreciate every update & detail you give. I know everyone is different but it gives me an idea of what to expect. I'm so thankful for that!
I hope all went well for you today & that you are continuing to feel better each day!