ANA Discussion Forum
Useful Information => Physicians => Topic started by: mommystanley on November 21, 2015, 10:11:19 pm
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I was recently diagnosed with a 1.7 cm AN. Once I received the diagnosis I was immediately overwhelmed with fear and confusion. It has gotten slightly better, but I still have my moments of high anxiety. Does it ever get better? I am a wife and mother of two young boys and I all think about is them. I am so grateful that I found this forum. It has provided me with so much insight, and his given me strength and courage to move forward. I know that this is just the beginning of my journey.
Once I received my prognosis, I immediately starting researching...and researching...and researching (of course ha). I started learning about acoustic neuromas, which brought me here. Then I began listening to patient testimonials on Youtube and other sites. Once I found my strength again, I immediately honed into finding the best surgical team for me. I have narrowed it down to USC, Vanderbilt and the House Clinic. Does anyone have experience with these institutions? If so, I would love to hear about why you decided to go with your specific surgical team.
Thank you!
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Hi mommystanley and welcome to this forum .....
You are doing all of the right things by researching as much as you can about acoustic neuroma and possible treatments (or watch and wait). I hope you have sent for the free ANA informational materials. If not, check out: https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy
As to the surgical teams you have listed, four years ago my regrown (very rare) acoustic neuroma was removed a second time by Drs. Rick Friedman and Marc Schwartz at House Ear Clinic with great results and no bad/unexpected surgical after effects (other than being deaf in that ear, which in my case I was expecting). Dr. Friedman has since moved to USC and he remains my doctor. Dr. Friedman is a neuro-otolaryngologist. Dr. Schwartz is a neurosurgeon. They worked together as a team during my surgery. Dr. Friedman now works with Dr. Steven Gianotta (neurosurgeon) at USC and Dr. Schwartz works with several different otolaryngologists at House. Both Dr. Friedman and Dr. Schwartz are excellent physicians so it is a tough call now.
Best thoughts and let us know if you have other questions and/or how you are doing.
Clarice
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Thank you Clarice! I do have a follow up question. Were you concerned of who would treat you after you went back home. Like what if you ran into a complication after you left Dr. Friedman's care? Did you have a local neurosurgeon lined up? My heart is guiding me to Dr. Friedman but I am concerned about post op complications.
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Hi mommystanley .....
Before I made the decision to go to CA for my second surgery (which is clear across the country from where I live), I asked Dr. Friedman that very question. He assured me that most complications occurred within 10 days post-op and they required patients to stay around that long because of this. He went on to tell me that in the unlikely event something cropped up after returning home, he would put me in touch with someone close by who could follow-up. Blissfully I did not have any complications.
I did make an appointment with a local neurosurgeon much later to just have a baseline, but he in essence said "Why are you seeing me? You already have been to the top in acoustic neuroma treatment."
My follow-up MRIs are done nearby and are sent to Dr. Friedman for review and that has worked well for me.
Hope that helps.
Clarice
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Hi mommystanley,
Like Clarice - I also saw Dr. Schwartz and Dr. Friedman at House about 2.5 years ago. I can't recommend them enough!! (Although now it will be a tough decision to choose one or the other). They were able to perform middle fossa on my 1.4cm tumor, and preserve the 90% hearing I had pre-op! I also didn't have a single facial or balance issue whatsoever.
I am from the DC area, but had no reservations about flying all the way across the country to have such experienced surgeons operate on my brain. I chose House clinic because of their vast experience with AN surgeries. They work with St. Vincents Hospital, where the nurses see many AN patients recovering from the exact same surgery multiple times a week. They also have the Seton House, which is basically a hotel attached to the hospital, which is super convenient for your family to stay.
Hope this helps, I'm happy to answer any other questions!
~Michelle
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Hi Michelle -
Thank you so much for your insight. I have started my conversations with both House and USC. I have not spoken to the doctors yet, but I can already tell this is going to be a very tough decision. I will provide an update as I mover further along with my decision process. This part is so difficult. I feel like I have been talking about this all day long (because I have ha). Once I make my decision, I feel like I will have a big part of this behind me. Your story is very reassuring!
Thank you!
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HI mommystanley
I posted the following entry in response to a question about experiences with Keck. While my experience was not uniformly positive (see below) the Keck team is very skilled and regardless of what you choose, you'll be in great hands. Good luck!
"While obviously I can't tell you what to do I can describe my own experience being in the exact same position.
I had a 1.6 cm AN removed via retrosig with the Keck team on 11/2/15 and would describe my experience as mixed. While I don't doubt the Keck (Friedman/Giannotta) team's skills, I think perhaps expectations were not properly managed in my case. We left for California (we live in suburban DC) fully expecting to retain my hearing. When that didn't happen, needless to say we were disappointed. On the positive side, I have no other side effects. No palsy, headaches etc. I had some dizziness but I'm back driving and feel exactly the same, save the fact that I have little to no hearing in my right ear.
Prior to coming to Keck we consulted with Johns Hopkins, Weill-Cornell, Mount-Sinai and the House Ear clinic (Brachmann/Schwartz). With the exception of House, all teams recommended retrosig; House offered middle fossa. On the strength of their skill set and recommendations and the fact that the House and Keck teams were the best in the country, we went with Keck; our rationale being that the Keck team was skilled in both approaches and chose retro.
While it may have been wishful thinking on my part or hearing what I wanted to hear, for whatever reason, the reality that I might lose my hearing (pardon the pun) wasn't fully communicated until the day before the surgery. At that point I had already taken 2 months of of work, arrangements for child care made, neighbors informed etc. As someone with no symptoms prior to surgery, we (wife and I) were in a tough spot. Although the surgery wasn't an emergency, it wasn't purely elective either. My AN was discovered almost by accident in 2005 when it was 4mm. Since then it had grown, on average, about 1mm per year. We knew we had to do something.
In the event, we went forward. Aside from the standard recovery difficulties (pain, dizziness) I'm fine at 6 weeks out. Keck, as a hospital, not Friedman/Giannotta was a tad disorganized. Despite sending my entire medical record months before the surgery, none of it was available in their computer system. Dr. Friedman had to rely on what we brought and what we told him. I had been taking medications for something unrelated to the AN and, despite watching 3 separate nurses type my medication regime into the computer, the lead nurse in the post-op ICU said "We have no record of him taking this specific medication." Thankfully, my wife was their to correct the mistake.
In any case, I don't want to deter you from choosing Keck. Their team is very skilled. My AN was very close to the cochlea and so I wasn't (I now understand) a good candidate for hearing preservation. Please feel free to reach out if you'd need more information.
Best,
Josh"
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You can't do better than House, in my opinion. They have been doing ANs there for decades, so there is no disorganization.
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Hi Michelle -
Thank you so much for your insight. I have started my conversations with both House and USC. I have not spoken to the doctors yet, but I can already tell this is going to be a very tough decision. I will provide an update as I mover further along with my decision process. This part is so difficult. I feel like I have been talking about this all day long (because I have ha). Once I make my decision, I feel like I will have a big part of this behind me. Your story is very reassuring!
Thank you!
Mommystanley,
Any updates?
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We flew in from Georgia to have retro sig surgery at House with Dr, Schwartz and Slattery. (after months of research and worry) Can't say enough good things about the drs and staff at House and St. Vincent's. They made our stay extremely easy and comfortable. Having Seaton Hall right next to St. Vincents made it nice too. Can't go wrong with Dr. Schwartz. he's simply the best and they really take care of you.
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One week post surgery here ( the spouse of the pt). We are still in Los Angeles after surgery with Dr. Friedman. His results and that of the neurosurgeon Dr Gionnata( I always spell his name wrong so forgive me if I have) speak for themselves. My spouse had surgery on the 17th and is now walking independently ( no walker) showering unaided, and is general leading a normal life..... 7 days after surgery. They removed 100% of the 3 cm tumor and her face was not effected AT ALL. She did lose her hearing which she feels is a small price to pay for all she has maintained. I know she will go back to living a full life. We are more than grateful.
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Hi Mommy,
I went to House in 2003 and had the best experience. I chose Dr House and now retired DR Hitzelberger ( he had performed the most procedures of anyone in the world and his hand was very steady! )...but Dr Friedman was the next runner-up when he was there.. I know someone who went to Dr.F before me and she was thrilled and he was very sympathetic and reassuring when I spoke with him on the phone. I am partial to House Ear Clinic and the housing accommodations for the family adjoining the hospital. I knew That I would be deaf in one ear but the hearing was so distorted by then it would have to be removed anyway.My tumor was so big and growing so fast, they literally saved my life. It was expected that I may be left with a palsy face,but all I have is the slightest tingling every so often.That's skill! I don't know if Dr.House is still performing operations or just research at this point. My mother calls me the " miracle girl ". I owe my life and normal looks to House Ear! You can't go wrong with either. Look at the whole picture.My 11 yr old son came with my husband and my parents and they had a rent a car,but the rooms they have at House were right there by walking across the street, just like I did the morning of my surgery.Best, Nancy :)