ANA Discussion Forum
General Category => AN Issues => Topic started by: patt on April 07, 2010, 02:50:27 pm
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Hi ---
I was diagnosed with a 2.7 cm acoustic neuroma on the 22nd of March. I have an appointment to see a Radiation Oncologist in two weeks. I am not able to see a Dr at the U of Minnesota until July --- he is on medical leave.
Is there anyone out there that has been to the Drs at the Mayo Clinic in Rochester, Minnesota?? I would appreciate your help locating a Dr.
Thank you, Patt
I am having a very hard time with this journey!!!!
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Patt -
I may have mentioned this before, there are so many posts on the Forum I sometimes lose track, but I believe Drs. Driscoll and Link are at Mayo in Minnesota.
If you search on Mayo, Driscoll, or Link, you may find some threads about them.
Jan
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Hi Patt,
I was diagnosed 5/08 with a 2.1cm. My first consult was at Mayo Clinic with Drs Driscoll and Link. I liked them and would have gone there for gamma knife, but after more research, I ultimatly decided on cyberknife in hopes to save more hearing and went to Stanford with Drs. Chang and Gibbs which I had done 11/08. I took my time making this decision and had much help from this forum and from the Cyberknife Patient Forum. I would be happy to tell you more if you want to pm me. This is a true mind blower for all of us when we're first diagnosed. You will be o.k. There's great information and help from folks on this forum and by reading the archives. Please don't hesitate to contact me if I can be of further help. Take care. Mona
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Hi there!
I live just outside of Milwaukee. I was all set to have a full day of appts at Mayo clinic last week, but cancelled as I made my decision to go to House in LA. From what I have read and heard, Dr Link at Mayo is great! To give you some perspective on how I made my decision.... I am in Medical device sales and spend most of my time in the operating room, so I am super critical. I spoke with several surgeons (general not neuro) about decision making. I also reached out to numerous post op patients. I had the chance to speak to Dr Friedman from HEI (thank you DL) over the phone. After speaking with him I just knew. I didn't think that I would get that feeling about anyone/anywhere, but I did. You will too. Now I will also tell you that I am fortunate enough to have my husband, mother and mother in law coming out with me to take care of my baby. If I didn't have them, it would have changed my ability to fly across the country...
Obviously, surgical volume is important. Not only is it important for the doc, but it is also important for the ancillary care staff. You want the nurses on the floor to be used to managing AN patients and are able to immediately diagnose and respond to potential complications. I needed to feel like I was being heard by the surgeon and able to ask anything. Dr F and I have spoke or emailed almost daily for a week and a half. He recognized how scared and neurotic I am due to my pregnancy and tumor size and has supported me accordingly. (As a note here, I never met the docs at Mayo. Once I spoke with Dr F I stopped looking further as to not stress myself out and muddy the waters). I met 2 other surgical groups in person before deciding. Now I wait for my c-section then my AN surgery in July. Once you make that decision, you will feel much better...I did. So my advice is to take your time, so some research and then make peace with it all...if you want to talk I am here and am going through this alongside of you...
Best,
Kris
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Patt, Goldie had her surgery at Mayos last fall. She has done very well. There was a gal who from Missouri who had it last summer. I know there has been more. You can always come on down to Iowa too but could be a long ways if are in northern part of the state. Lots of us go to Iowa City. Good luck in where ever you choose.
Cheryl R
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Hi, Patt. I haven't seen all of your messages, but Cheryl told me you had asked about Mayo. If you're still looking, I can highly recommend them. I had gamma knife surgery by Dr. Link and unfortunately was in the small percentage of GK failures (just one of those things - I don't blame anyone). This past fall I had microsurgery and a wonderful outcome. Dr. Driscoll from ENT shared the surgery with Dr. Link, the neurosurgeon. If I can answer anything for you regarding Mayo's care, please feel free to PM me. Best wishes!
Denise D.