Recently Diagnosed in AZ

[AZ JB]

My name is Bob and my wife Judy has posted a couple of times. I had my first consult at Mayo in Phoenix to Dr. Barrs and based on the size 1.4cm he suggested wait and see. I'm seeing Dr. Syms tomorrow to get another opinion and plan on doing phone consults with House of Ear and Dr. Chang at Stanford. Just starting the process of getting opinions, but all the options and potential outcomes are overwhelming. Any insights as to who to go to other than who i have mentioned to get the different opinions before making a decision on how to proceed?

BL

[ppearl214]

Hi Bob and welcome.

As with any medical ailment in life, no one can tell you what is best for you and your unique situation (each of our AN journeys is unique to ourselves).  We can share experiences (good and not so good) and our opinions but it does sound like you have chosen a good path to pursue.  You are pursuing opinions for AN treatment options that are all very viable with very reputable facilties/drs.  Mayo, HEI, Stanford..... all terrific facilities for AN treatment options.  I guess it would be what your gut tells you.....   possibly keep these things in mind.  Since they all offer the experience needed in AN treatments (personally and as a facility), who are you comfortable with? Will your insurance cover you to travel out of state for treatment?  Since they should do your follow up care, keep in mind the travels involved for the follow up. How will they do their follow up? 

Bob, I/we know this can be overwhelming in the "decision-making" process but know that once done.... it truly does feel like a monkey off your back.  If need be, since you are non-emergent, take time to take a step back, a deep breath and ponder.  You have time and since this can be overwhelming, make sure you leave no stone uncovered. It's your body, not the dr's, so do what you feel is best for you, your family, your work situation, your financial situation, your overall well-being.   Been there.... felt it... and you will, too! 

Just my 2 cents.

Again, welcome... and hang tough. 

Phyl

[CHD63]

Hi Bob and welcome to this forum!

So glad you and Judy have both posted now because the patient and the caregiver are both involved in this process.

Ditto to what Phyl has said!!  Even though you will take input from Judy, the medical professionals, family, and friends ..... this is still (in the end) YOUR decision ..... you will know what feels right to you when the time comes.

We are here to support you in whatever way we can.

Thoughts and prayers.

Clarice

[leapyrtwins]

Bob -

check out Barrows in Arizona.  Why travel to CA?

Jan

[AZ JB]

Thanks for your replies.  Jan, I should have made myself more clear, when I said I was seeing Dr. Syms, he is a Neurotologist at Barrows.  My reason for exploring options in CA is I want to make sure I go to a facility that does a lot of the procedure I decide to go with, & I want to be with a doctor I'm comfortable with.  Because of the location of my AN, neither the doc. at Mayo, nor Dr. Syms from Barrow's, feel I'm a candidate for Middle Fossa surgery, but would be for the other kinds (probably the one where they go in behind the ear).  They both feel the W & W approach is best for me right now.  I'll have another MRI in 3 months so they can try to determine if it's growing & if so, at what rate?  They both feel I would be a candidate for radiation.  When I asked Dr. Syms about the two kinds of radiation, he said it's not the procedure, but the outcome, & they both get you to the same place.  He used the analogy of us driving down to our appointment -- if we drove in a Ford or a Lexus, it didn't make any difference -- the thing that mattered was we arrived (in other words, the outcome).  Dr. Syms does surgery & also the CK procedure.  I'm mailing my films & reports to The House Ear Institute & to Dr. Chang tomorrow.  Any recommendations on a facility/doc. for a GK procedure?  Also, Judy found another facility in CA that I can't remember the name of right now (they moved there from New York), that claims to be having success with another less invasive procedure, so we'll also look more into that.  Fortunately, being able to W & W gives me time to make a well informed decision, however, I am having more headaches & am very tired.  Did any of you have problems with fatigue BEFORE your procedure?
BL

[CHD63]

Hi Bob .....

You are doing all of the right things to research all of your options and go from there.

One word of caution if you are looking in to the "less invasive" endoscopic procedure ..... yes, some AN patients on this forum have had good results, but there have also been some less than good results.  Be very careful to research the doctor's credentials on this one.

Clarice

[schmidtkat]

Hello Bob and Judy,
First of all, so sorry to read of your diagnosis. Researching your options is a great place to start and having a selection made with the provider you have most confindence in will be a huge relief. As you have undoubtly already read on this forum, everyone's situation is unique. For me, having an AN nearly the size of a golf ball virtually removed one of my decisions. All consults agreed the best treatment option was surgical. So the next decision quickly became where to go for the best surgical results. This was a challenging process, but for me the best fit was the HEI team in LA. Although I am from Iowa, traveling to CA to receive the best care for a proceedure that leaves little room for a "do over" was quite appealing. I looked at this surgery as something I get one attempt to get right, so I wanted the best. Please know that I am in no way discrediting any other providers. Many others on this site will profess the same elation for their doctors. I can only speak to the experience I had and tell you that I would go back to them in a heartbeat and highly recommend their entire team.
I wish you all the best in this healing process and am glad to see you have found support from this AN Discusssion Forum. There are many great people on here who care and share!
Kathy

[rvb755]

Hi Bob, I really resonated with your comment about feeling tired even before the procedure.  I didn't find out about my tumor until July of this year.  I knew my hearing was getting bad in one ear but didn't know why.  I also was feeling fatigued all the time.  I really struggled to get out of bed in the mornings and had lost interest or motivation to do some of the things I had always enjoyed doing before.  I never connected the symptoms until the results of the MRI came back.  I can echo Kathys comments about HEI.  I was there the same time she was and I thought everyone there was great.  I couldn't be more pleased with the outcome from my surgery.  My tumor was large, and I thought the same way Kathy did - I only really get one shot to do this right and I wanted an experienced team.  Best wishes to you as you make the decision how to proceed.

Rick