Making a Decision

[jetatp]

I am new to this forum my story is Diagnosed with an AN in my left ear canal on May 26th 2013.  Symptoms of dizziness started a couple of month's ago and then last month I noticed
a fullness in my left ear and that I did not seem to hear as well. Also certain sounds really bothered me. An MRI was done and they found it. My job does not allow me to wait and watch
as I have already gone on Short Term Disability with my Company. So I guess it is going to be Surgery for me.

I have already had a phone consultation with Dr Friedman at House and he said that I would be a good candidate for a Middle Fossa for hearing preservation and the fact he described it
as long and skinny. I am driving down to Stanford tomorrow to meet with Dr Robert Jackler on Tuesday June 11 2013. I am trying to decide if I am wasting my time going to see him
and should just schedule the surgery at House with Dr Friedman. I told Dr Friedman I was going to see Dr Jackler and he told me that that House does more Middle Fossa surgeries
than anyone else. Also with good success with hearing preservation.

I don't want to wait so time is important the people at House said they could get me in for Surgery within a month. I would appreciate any comments on making my decision

Thanks

[RachelSta]

First, I'm sorry about your diagnosis. I know for me it threw me for a life. You will get a lot of great advice from people and here - its a very welcoming and helpful community.

I think it's worth it to have a second (and maybe third) opinion. This is porbably not the most popular opnion on this board. Yes, House does more an surgeries than anyone else, but that doesn't mean that other surgeons are not good at it. Other places have the same success and complication rates as House.

I was very close to traveling to House for surgery, but ultimately decided to stay close to home (I live in Michigan) for multiple reasons. The neurosurgeon who did my surgery has done over 800 AN surgeries and is an  extremely respected neurosurgeon nationally. I had surgery on May 29 (1.5 weeks ago). My AN was on the smaller side (1.6 cm), but it completely filled my internal auditory canal. I have had no facial nerve impact at all other than minor dry eye that has already mostly resolved itself. I was out of the hospital 3 days after surgery. The only medication I had to take after getting out of the hospital was a steroid and that was only for 1.5 days to finish weaning off. I had a pre surgery vestibular therapy appointment and have a post surgery appointment this coming Thursday to make sure my balance is comin along (which it is). As an aside, they did also send me home with prescription pain meds, but only to take as I felt I needed it.

While House is good and plenty of people have a wonderful experience there, I think you have to make your own personal decision of what is right for you and make sure you feel comfortable with whatever decision you make. Find out each surgeons complication rates.

All that said, good luck n making your decision.

Rachel

[jetatp]

Thanks for sharing your experience with me. I live in Reno NV so I am leaning towards having the surgery at House. They also are an in network provider for my insurance. I just like to
know if Dr Jackler does many of the Middle Fossa type of Surgery. Also I have Family in Los Angeles which is important to me as well. My wife is a nurse so as far as after care I have that part covered.

Thanks Again

[nftwoed]

Hello jetatp;

   It's a personal call. Jacklar has had a lot of experience but I doubt HEI ( all ) have had less experience in just the MCF approach ( important ) as it is fairly unique and a bit complex.
   Overall, more RS surgeries have been performed as was the first approach used extensively, but, I doubt it's hearing retention rate matches that of MCF. Also, side effect profile, post op.

[terisandler]

I thought about surgery until I read about the potential side effects.  I decided to try CK first, and am waiting for my first MRI post CK in August.  The potential side effects seem much more doable than surgery.  If you are on disability at work then why not take the time to explore all options.  Just my opinion.

[Tdenmo]

Since you are in Reno, you might want to consider checking out Barrow Neurological Institute in Phoenix. I live in the Phoenix area, so they were convenient for me, but I think I would've checked them out anyway, and I would definitely recommend them given my outcome. I am about 7 months post-op after having my 2.5 cm acoustic neuroma "de-bulked" using the retrosigmoid approach. I had experienced facial numbness, but had only a slight loss of hearing prior to surgery--due to the way my tumor grew. All of these are somewhat unique in size and location and the pre-treatment damage they cause, so as you can tell, one treatment doesn't fit all situations.
I was very lucky to be referred to Dr. Robert Spetzler at Barrow and he and Dr. Weisskopf, a neurotologist who is also fabulous, did my surgery. The size and location of mine was such that they did not feel gamma knife was a good option. The retrosigmoid approach was recommended as giving the best chance of saving the facial nerve and hearing--I didn't lose any additional hearing and my facial nerve is fine, too. I'll be following up with regular MRIs (just had my first one and it was as expected) and perhaps will need to have radiation at some point. I know it's a scary time, but the reality is that the options you have sound great and these people are fabulous at doing what they do. I can't say enough great things about my experience with these two specific wonderful doctors, and everyone at Barrow and St. Joseph's. I think you are right to take some time to figure out what feels best.

[jetatp]

Hi

Thanks for a reply! I actually have surgery have Middle Fossa surgery scheduled for next Wed June 26 at House. My Surgeons are Dr Friedman and the Neurosurgeon
is Dr. Lekovic who trained at Barrow. I actually use to live in Phoenix and still have a house which is rented. I did consider Barrow but decided to have surgery my hearing
is over 80% and really want the best chances given to preserve it.

Thanks again