Jeff and I visited the Mayo clinic yesterday and talked with Dr. Link and Dr. Driscoll about treatment for my AN. I expected to hear pretty much the same information we heard at the consult at the U of M and fully planned to keep my surgical appointment at the U of M. However, after spending two hours with the doctors, Jeff and I both felt that I would receive nothing but exceptional care at Mayo and we have switched the surgery to Mayo for Jan. 25.
The doctors were very thorough and compassionate. They spent a lot of time with us and answered all of our questions. They discussed all three treatment options with us – “wait and see”, gamma knife and surgery. After some discussion they recommended surgery because of my age, etc. - very similar to what we've read and learned at past appointments. When discussing surgery they recommended a different surgical option than the U of M did (a retrosigmoid procedure). This procedure is used when patients still hear in the impacted ear like I do because five percent of the time the hearing can be retained. They said I shouldn’t count on keeping my hearing, but there is a slight chance. This was news to us. The previously recommend approach (a translab procedure) would definitely severe my hearing nerve. The only drawback is that the retrosigmoid approach has been known to cause more headaches than the translab approach. They said the headaches can be treated with medication and are, in most cases, temporary. Still there are many instances where patients are faced with devastating headaches post surgery and it has really reduced their quality of life. So at this point and time I have decided to have the surgery at Mayo, but I have not decided which procedure to have. The doctors are recommending the retrosigmoid, but they said they would gladly do the translab if that’s what I decide. One of the biggest challenges in all of this is there are so many difficult decisions to make. It would be much easier if there was just one treatment and that was that. But it’s not that easy. I am trying to do as much research as possible to help me make this decision without being completely freaked out – there are a lot horror stories out there, but many, many success stories too.
I’m looking forward to celebrating Christmas and am grateful that I could wait until after the holidays to have the surgery. It’s such a wonderful time of year, I would hate to miss out on it all. I hope you all have a wonderful Christmas with your families! Take time to count your blessings, I know I will.
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10 comments:
Shalla,
I'm so glad everything went well at Mayo this week and that you have peace about your decision. I also just wanted to let you know how incredibly brave I think you are, and how inspiring it is to me to watch you go through this difficult time with grace, a positive attitude and a smile on your face. Please know Scott and I are diligently keeping you and your family in our prayers now and in the months to come. We know you are in good hands!!!
Merry Christmas to you, Jeff and Brookie ... may the new year bring you blessings beyond belief!
Love,
Natalie (and Scott and ty)
Best of luck to you and your family. I too will keep you in my prayers.
A new reader...
Shalla,
You have a great attitude, and that puts you at an advantage. I had surgery 15 months ago in Boston (my sons were 1.5 and 4 at the time) and I remember how nerve-wracking it was going into it.
I came through with flying colors - no residual problems at all except the expected total hearing loss.
Please contact me if I can be of any help. You can also come visit our community that the ANA forums - it's an incredible group of people.
Katie
Shalla,
When I read your story I felt like I was reading my own. I am 32 and was recently diagnosed with a 2.2cm AN. I went to the House Ear Institute in CA where they recommended the translyb approach. I was totally devastated to think of loosing my hearing completely. Next I went to UCLA where they recommended the retrosigmoid approach and told me if I can talk in a phone now and have good hearing then I should have a good chance at saving my hearing. I know exactly what you mean about making this decision. I am going to UCSF on Jan 4th. As I do more research I see that the Mayo Clinic has been ranked 1st in Neurosurgery for several years. I am considering flying out from CA to meet with them. I am leaning toward the retrosigmoid approach but I have also read about the severe postoperative headaches and have been concerned. I am interested to know what size your tumor is and what approach you decide to choose. I also have children. 7 and 3 so I totally understand trying to set this aside and enjoy the Holidays.
Shalla,
I hope you, Jeff and Brooke had a wonderful Christmas and I hope to see you all on New Year's Eve. I've kept you and the family in my prayers lately and I will continue praying for you. As I told you, if you need anything as you are going through your recovery process, don't hesitate to ask! Keep a positive attitude as you always do and things will work out fine.
Tim
Hi Sis
We are glad we can keep updated with every thing. Sorry we don't call more, but you are in are prayers each and every day.
We love you guy's,
Jayson, Mary Jo & family
What a connection and positive impact you are having with others! You know we will be there for you, Jeff and Brooke in any way- please call us when you need it! We luv ya! Groove out!
Katy, Dan, Kori and Aaron
Shalla --
Vikki just sent me the link to your blog. I hope she is sending you my well wishes -- thought I should do the same. I'm so sorry you're going through this but it sounds like Mayo is going to take care of you! I will be thinking about you and wishing you all good news on the 25th. I hope 2008 showers you with blessings. I've always thought you were super duper awesome, I hope the year matches you and your supremacy!
Much love and good wishes,
Lisa Arnold
Hi Shalla:
Tim Dressen shared your blog with me. You are in my prayers. As an FYI, my dad was having some health issues last year (Feb 07) and we brought him from Williamsburg, VA to Mayo. The diagnosis was the same but they recommended treatment his other doctor's didn't. It has been very successful and he's doing just great.
I share this with you because Mayo is just a fantastic place with the very best in the latest medical treatments and procedures.
Take care and know that MANY people are thinking of you and praying for you!
Toni Nuernberg
Shalla,
Heard on the ANA forum that you're being treated for AN tomorrow. I had surgery for AN (1.5 x 1 CM) about two years ago, and life is good. Best of luck to you.
Regards,
Rob (HeadCase2 on the ANA forum)
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