ANA Discussion Forum
General Category => AN Issues => Topic started by: Girldad on December 22, 2021, 11:14:49 pm
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I hope I am posting in the right spot. I was diagnosed with my AN over a year ago (measurements in my signature). I just stumbled on this website as of tonight, and wish I would have found it sooner. Since I am only 40 and have a medium sized tumor, my neurotologist is recommending surgery to remove it. We are currently in the process of scheduling it.
I am pretty ok with having the surgery, but I would really like to hear from somebody that has had surgery at the same place and with the same team as I will be. My neurotologist is Dr. Gary Moore, neurosurgeon is Dr. Brandon Bowdino, and the surgery will take place at Methodist Hospital in Omaha, NE. It would really help to put my mind at ease if somebody out there would tell me that their surgery with these people went great and that I am in good hands. They both seem to have plenty of experience, but there is nothing like hearing from somebody that has been in the same position that I am in right now.
I have tried to keep this post as brief as possible, hopefully I have provided enough details. Thank you for reading this.
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I'm glad you found us! I'm sorry it took so long. Did you try using the search feature to see if any other folks on the forum had mentioned your docs or the facility? Have you asked your docs if they have any former patients who would be willing to talk to you?
Keep asking questions. Wishing you the best!
Marla b.
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Yes I have searched for them. I didn’t get many results. The last time anybody posted about dr. Moore was 2010. I had no results when searching for dr. Bowdino. I knew it was probably a long shot that somebody would see this that has used the same team, but I thought I would try. Thanks for the reply.
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One question to ask is how many of these procedures they do per month/year. You want someone with muscle memory.. If these guys haven't operated on an acoustic neuroma since 2010, it might influence your insurance carrier.
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Yes, I have had more than a year to do a ton of research on all of this and feel like I have asked all of the right questions. I can't believe that I haven't found this message board before now. My wife has found more research material for me to read than you would believe. Both my neurotologist and my neurosurgeon have done a lot of AN surgeries. I was just a little concerned when I didn't find either one of them in your provider list.
My main fear from the beginning of this was picking the wrong care provider. My original neurotologist that I was referred to has moved to another practice a few states away, so I am on my second one already. I live in a rural area and have to travel for at least 3 1/2 hours no matter what direction I go. I wouldn't mind traveling a little further if it got me to the best surgeons possible. They tell me that my AN is sitting against my brain stem. I have also failed a balance test and a facial nerve test. I have been dealing with hearing loss for years now. For these reasons, I have been advised to do something sooner rather than later. If I heard from somebody that has used the same care team, it would just make me feel a little better about all of this. Also, that is why I am hesitant to start the process all over with a new neurotologist that would be even further away.
Sorry for the long post, I am just trying to put my reasoning into words.
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I’m sorry I haven’t had those doctors. I have done a ton of research on doctors and ones with great results, though. Most of my research was from this forum. I do remember that a few people on this forum have had surgery and great results from Northwestern in Chicago,IL with Dr. Fish man and Brayton. I would just make sure you’ve had at least a consultation with one other doctor.
Good luck with everything.
CaMarti
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I also wanted to mention Rush Hospital in Chicago. I believe Chicago is a long drive or train ride from Nebraska. Just a thought, in case you’re considering a second opinion or doctor.
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I have consulted with three different neurotologists about my tumor. They have all three told me different things. They have all told me that doing nothing is not an option for me because of my age and the size of the tumor. However, the first doctor told me that he would hold off on surgery as long as possible because I could still hear relatively well out of that side. He suggested an MRI every year to monitor growth rate. He has since, left the practice and is not in the picture now.
After that I sought a second opinion from the center for acoustic neuroma in Dallas, TX. My wife and I came across them while doing our research on the subject. After they looked at my MRI, their recommendation was to have it removed with the translab method. They told me that was the best way to get at the tumor, remove all of it, and not have to deal with it again.
The next neurotologist I met with is the one I am currently with. His recommendation is to remove it retrosigmoid method. He thinks it is possible to save some of my hearing. He is also concerned about the location of the tumor in relation to my brain stem. He is urging me to get it removed sooner rather than later.
Three different doctors and three different recommendations. It is so tough to know what to do. I am tired of doctor appointments. I really just want to have confidence in my doctor choice, put my trust in them, and follow their recommendations. I just can't stop going back and forth on whether I am making the right decision.
Thank you so much for the replies. I have been needing a place like this. I am reading as much as I can about other people's experiences on here. I feel selfish making these posts on here complaining about my situation, when I know many people have it way worse than I do. Thank you for reading.
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I didn’t know you already had three consultations. That’s great and it sounds like you’re doing everything right. From what I’ve researched and have been told by neurosurgeons, the retrosigmoid approach does seem appropriate for your situation. Most neurosurgeons I’ve met suggested that approach for mine as well, and mine is smaller than yours. It makes sense to get yours removed given it’s size as well. I didn’t know you already had three opinions. I was just trying to suggest more neurosurgeons that I’ve heard of since you didn’t seem to find experiences with your particular surgeon, but I’m sure that’s not necessary to do now either if you are all set.
Best wishes,
CaMarti
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I probably didn't explain myself good enough. Even though I have had 3 different consultations, it would be nice if they agreed on something. I have been obsessing over making the right decision on surgeons, but I think it is time to just trust the one I am with and get this thing taken care of. Thank you for the suggestions. Good luck and best wishes to everyone that is dealing with this condition.
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Sorry For your diagnosis but you have found a wonderful site with a multitude of information from people in your situation or who have been through treatment already. The ANA will also send you a packet of info and booklets that will prove to be very helpful and informative if you haven’t reached out for it yet.
It sounds like you have done your due diligence already and have decided who and what you want to do to treat the AN. That’s a big step. I would just make one suggestion that you may not be aware of, if I may. You can get a complementary consult over the phone with a Dr from the House Ear Clinic in Los Angeles by just sending them a copy of your latest MRI and some other info. They will review the MRI and call you to discuss their opinion of treatment options with you. No obligation.
I did this back in 2009 and spoke with Dr Slattery over the phone. VERY nice Dr and very patient and informative. He even called the next year to see how I was after I chose not to travel out there. House Clinic is one of the first, if not THE first, clinic to perform surgery on ANs in the country.
There is also Dr Rick Friedman, who used to practice at House, and has moved to UCStanford, I think it is,,,,, he is also highly recommended. There are other places that will do complementary consults also.
Just another option as you said you wished you could get some consensus on treatment options. It may be worth looking into as a resource.
Good luck to you . I only offer my help,, it’s up to you all the way. I know it was a hard decision for me. We are so used to a dr telling us how to proceed with surgery that being left up to us to decide is difficult. But as you say, YOU have to be confident and secure in the ultimate decision you make.
We are all here to help!! Glad you found the ANA!
Jane
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Thank you for the suggestion. I saw the free consultations mentioned in another thread on here. I think I will definitely take advantage of that. After reading through this forumn, the university of Iowa is mentioned several times as an excellent choice. They are 6 1/2 hrs. away from me, so I have thought about seeking a telehealth visit with a doctor from there as well. I am unsure about how many consultations my insurance will approve, so I might have to check into that before making any more appointments, but I will definitely look into the free consultation with the House institute. Thank you very much for bringing that to my attention.
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I understand what you’re looking for now. I agree with alabamajane. You can get quick, free consultations with House or UCSD, (Friedman and Schwartz), or University if Iowa to give you a consensus on which method of surgery is best for you. This will give you some peace of mind that this is indeed the right decision.
Best wishes,
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Well, I have followed the great advice that I have received here and have contacted the house institute. I am putting together my information and discs to send there for them to review. I have also scheduled an appointment with dr. Gantz at the university of Iowa. I have decided that I am not ready to put my complete trust in the care team that I have seen so far. I am not ruling anything out, but I just feel that I should check on all of my options. I have read great things about dr. Gantz on this forum. I am really looking forward to this appointment. I hope that I will feel comfortable putting my trust in him and his team and move forward from there. Is there anybody that is reading this that has had dr. Gantz that would care to comment? Thank you all.
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You might try the search box at the top right corner.
Maybe put in Dr Gantz or U of Iowa and see what it returns.
I remember a lady named “ Cheryl” something who I believe went there years ago.
I wish you well in your search for just the right team for you !
Jane
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Any update on what you finally did, Girldad?
After reading this thread, the suspense is driving me nuts! It's like reading a suspense novel with the last chapter missing!
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I'm sorry donjehle, I didn't think anybody would be following this thread anymore. Here is a recap of everything since my last post:
I ended up not going to U of Iowa. There was a winter storm on the date we would have had to travel, and they would not do a video appointment. I never rescheduled my appointment.
I went ahead and took advantage of the free consult from Dr. Friedman at UC San Diego. I was extremely impressed with him over the phone. The whole process was very convenient from uploading MRIs, to the patient navigator setting up the phone consult.
I also sent my medical info to the Mayo clinic in Rochester and did a video consult with a specialist from there.
In the end, I decided to make the trip out to San Diego to have my AN removed by Dr. Friedman and Dr. Schwartz. My surgery is happening in March. The plan is to have it removed translab and do the BAHA at the same time. Every time I start getting nervous about the surgery, I go to this site and start reading all of the wonderful posts about Dr. Friedman and Dr. Schwartz. When I did the phone consult I really wasn't planning on going out there, but I was so impressed that I decided to. I had additional questions after the first phone call, so I emailed them to the patient navigator, and Dr. Friedmen called me the next day to answer them.
I will try to update this with my experiences before and after surgery.
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Thanks, Girldad, for the update! It is great reading, not only what you did on getting the consults, but also on the confidence you have with Drs. Friedman and Schwartz. It doesn't sound like you can go wrong with them, and it seems like it is worth the trip to San Diego. Of course, San Diego is a wonderful place to visit anyway!
Best wishes on your surgery in March! We will be rooting for you!
I will be looking for your update next month.
Thanks for sharing!
Don
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Good luck! I had a fantastic experience with my middle fossa surgery there last month with them. I recommend the La Jolla Family House too as a good place to stay. It’s within walking distance to all the appointments and less expensive and more convenient than a hotel, IMO.
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Thank you kcollette. I read your post where you gave out your twitter info. I looked you up on there to check out your story. Thank you for sharing. It really helps to read about other's experiences. Unfortunately, my documentation will not be nearly as thorough as yours. I don't really do social media. I will try to give a recap on this thread at some point after my surgery, maybe when I get home.
Right now we are on the wait list for the La Jolla house, so hopefully there will be a spot for my wife there while I am in the hospital. We have backup reservations made just in case.
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No problem! I agree that it helps to read other’s experiences.
I’ll keep my fingers crossed for you to get into the family house and have a great surgery.
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When in March is your surgery, Girldad? I want to pray that it goes well for you on the day of your surgery.
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My surgery is scheduled for march 17. I am getting anxious to get it done. Thank you for your prayers donjehle. I will be praying for you as well.
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Thank you! I will put March 17 on my calendar. I can understand your desire to get it done. I'm looking forward to getting my CROS system fitted and moved it up a week (when someone canceled) and that's nothing compared to your surgery! There comes a point where we just want to get it done and move on with our lives (even with challenges). The next two weeks may be difficult while you are just waiting.
Thanks for sharing your surgery date.