Watch and Wait > For those in the 'watch and wait' status

recently diagnosed - questions

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October:
Hello,

This is my first post. I'm not really sure where to start. I'll try to be brief but I tend to ramble.

I've been recently diagnosed in October based on MRI and hearing loss in right ear. Since then I've had consult with 3 doctors with Kaiser (current insurance) a neurologist, neurosurgeon and ENT. They gave me a thorough summary and aside from the neurologist that seemed to be annoyed I was asking questions, the other 2 doctors were emphathetic and answered a lot of questions.

The timing was bad as my insurance enrollment was around that same time. From what I've gathered initially, it prompted me to switch insurance in the hopes of being able to access specialists for this, but choosing a GP (PCP) has not gone well so far. Holiday time doesn't help, but getting through to anyone accepting new patients is rough. At least in the San Francisco Bay Area. I'm still looking.

I did manage to upload medical imaging to UCSD with Dr.Friedman for a free consult and 2nd opinion which is scheduled 1st week in January. I've browsed the forums and attended some groups. It's all been helpful and I'm very thankful for that. The holidays are rough as shortly after my diagnosis other symptoms started (where before it was only the hearing loss that was noticeable). My face started tingling and sensation of numbness that lasted for a few weeks. It's settled down a bit now, but now I've started to feel dizzy in the mornings and "woozy".

I'm hoping to solicit questions from anyone reading this, about what I should be asking Dr.Friedman during the consult. I'm hoping to eventually find a GP and have some traction in further assessing my symptoms and progression and start making some plans on dealing with this.

Any recommendations anyone has are appreciated.

bfoley:
Welcome to our club October - Sorry you had to join but the folks here are very friendly!

There is a print out of questions to ask - and you can vary them based on your situation.  I copied the ones applicable to my situation, then added a few of my own and brought them to my appointments.  I also brought someone with as you can miss some details.  Its quite a lot and fairly overwhelming.

They are located under the General Category, From ANA and the second thread down - Questions for your physician - print out and take to your next appt.

I found it helpful to read others questions and the answers they received.  It set expectations.  This tumor is life altering but not (to my knowledge) life ending.  I expected things to be different, but am able to do the things I want, perhaps with a little modification.

Wishing you peace on your journey!

donjehle:
Hi October, and welcome to the ANA Forums!

Thank you for making your first post here.  And I hope you will continue to be active in our community.

bfoley is a great asset to the forums, and her suggestion on where to find the questions to ask your specialist is right on the mark!

While your GP is important for so many health issues, I think your most important decision for acoustic neuromas is whom you are going to choose to do the treatment?  Some people on these forums have chosen specialists without much experience in treating acoustic neuromas, and they have suffered horrible results.  They may have gone to them because they were close by where the person lived (and they did not know any better). 

While awful results can even come at the hand of the most experienced specialist, they tend to happen much more often to those who do not treat acoustic neuromas very frequently.  So, if I was going to give you one piece of advice, it would be this:  Find specialists with a lot of experience in acoustic neuromas.  Consult with one who specializes in surgery for acoustic neuromas and consult with one who specializes in radiation treatment.  Or find a center which has both skilled surgeons and radiologists who work together as a team.  After hearing why both kinds of specialists believe their approach is better for your situation, then you are more able to make your decision. 

Best wishes on your journey!
Don

DanFouratt:
Hello October,

I went on a detailed review of my options and talked with many specialists in my decision journey. One thing you should be aware of it Surgeons think everything should be resolved with a knife.  I had one of the four I talked with admit it to me.  On the other side, all oncologist think some should glow especially if the tumor is small enough. Please speak to both specialties. As you can see from my signature block I went with CK.

Another thing I learned on my decision journey you need to be your on advocate. No one will do this for you.

In the decision making process my wife called me obsessive and she might be right.  I created a chart and with the two general radiation approaches and the three surgical approaches across the top and 20 to 25 items of interest done the left. I each intersection I wrote what i knew about the procedure and how it interacted item of interest on the left.  (I rambled here.) This matrix help me keep track of what I was hearing and learning. If you think this will help you let me know and I will share.

I will echo the other comments, go to someone who has done this before.  The surgeon I would use (the one I started with) if I need surgery in the future had a great line. (PS all the other surgeons I spoke with knew him and said I was in great hands.)  After answering an exhaustive list of questions he told me I forgot one, "this is not my first rodeo."  He said that with the confidence of a leader in his field with 400 plus procedures behind him.

Best single advice I received:  No decision is a bad decision, make the decision you are comfortable with and move forward, do not second guess yourself.

It is not fun gaining membership to this group, however this group was a difference maker for me. You are not alone and there are many people here who will help you with your journey and  any question you have.  We are in this together and we all will be AN strong together.

Good Luck and Stay Strong,

Greece Lover:
sore you had to join the club.  You've already received great advice here so I'll just add my solidarity and support! From what it looks like yours is pretty small for when you caught it, so that's a "blessing" so to speak.

Best of luck!

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