Questions to ask on my first trip to the Neurotologist

[HeidiC]

My first consultation is on August 2nd.  I am trying to get everything together so I don't have to stress about it last minute.

I am already stressing since its a 2 hour drive from me and I have to leave the kids in daycare, which I am not used to.  I am a stay at home mom, so it is unusual for them to be away from me all day(they are 5 and 6 years old) and I don't want them to be sad or scared.  Plus I worry what will happen if I am 2 hours away and my car breaks down, or I get in an accident, or I can't get back in time to pick them up for some reason.  Ok, done venting my stress for now!! 

I am making a list of questions to ask and wanted to ask you guys what questions that you thought are important to ask.  I do have the list from the ANA, but was wondering if there were any other suggestions.

~Heidi

[Jim Scott]

Heidi ~

I just re-checked the list of questions for the doctor suggested by the ANA and frankly, it's pretty inclusive.  The only things I would consider adding are an expansion of areas covered and how they will specifically apply to you.  Realize too, that the doctor cannot guarantee results and sometimes things come up after the tumor is exposed that might force a change in his surgical strategy.  In short, some questions won't have a guaranteed answer, but an experienced Neurotologist should be able to answer just about all the ANA-suggested questions to your satisfaction.  My doctor did.   Good luck with your consultation!

Jim    

[New girl]

Hi Heidi,

I agree with Jim - the ANA list is very good and you need to find out what specifically applies to your situation.   My advice is dont be shy and get all your questions in! I always take notes so I dont forget anything.  Good luck and safe driving!   

[skipg]

Heidi,
I just read a report that was sent out and returned by over 300 surgeons. They were given two questions on different sizes of AN's. They were asked there recommendations if the tumor was in fact in their ear. That is the one question I asked my Dr's recently. What would you do if it was your AN. I received the same answer from all three. Now I do feel good about my being in the WW Brigade. Note: the DR's were a neurosurgeon that does AN's, an ENT that assists, and a radiation oncologist who specializes in CK.
Never stop researching and asking questions.

Skip

[Cindyswart]

I whole heartedly agree with Skip. I got 4 opinions- the last two were from docs who specifically specialize in AN- the position of my AN was the deciding factor- not in the inner ear- toward the brain stem- that sucka is coming out!! Had it been more toward the ear and my hearing was already gone, I would have probably remained in W&W-

[HeidiC]

I whole heartedly agree with Skip. I got 4 opinions- the last two were from docs who specifically specialize in AN- the position of my AN was the deciding factor- not in the inner ear- toward the brain stem- that sucka is coming out!! Had it been more toward the ear and my hearing was already gone, I would have probably remained in W&W-

I don't know where mine is exactly yet.  I have copies of my MRIs, but I don't have the courage to look at them by myself.  I'd like the tumor removed.  My brother was diagnosed with a Pituitary tumor a few years ago, it has since been shrunk with medicine, but I remember saying to my mom that if I had one I couldn't stand just leaving it in my head.  Little did I know that my head was working on a tumor of its own. 

My only hesitation against surgery is because, if something goes wrong, then I could have had a few more years with my family-alive and well(my biggest fear is not making it through the surgery and my kids aren't old enough to remember me).  I just can't see waiting to let it grow and do more damage, and be more difficult to remove, especially since I still have my hearing.  Of course, there are no guarantees.  This is such a difficult decision.

~Heidi

[james e]

It is HIGHLY unlikely that anything fatal will occur during  the surgery. The doctors that do this surgery use only the most modern micro surgical techniques, and you can be assured that your children can plant an acorn in the back yard today, grow the oak tree, and use that "old oak tree out back to make Mom's coffin." You will live to see your grand kids!

All of us had some anxiety about the surgery. I get nervous going to the dentist. In fact, I would rather get another AN surgery than have a rootcanal done...at least you can sleep through the surgery. This surgery is super safe! The recovery takes a long time, and can be a challenge, and the recovery, not the surgery, was my most difficult and trying period. And I even had some fun recovering.

We are so fortunate to be living now, and not needing this surgery 50 years ago. The equipment is the best, the doctors that do this surgery are top drawer, and they usually have a very experienced crew in surgery with them. I am not advising you what to do, but this procedure is not an experimental type of surgery. There are three tried and true ways to do it, and you and I both have the supreme benefit on being alive now, and having these services available.

James

[HeidiC]

It is HIGHLY unlikely that anything fatal will occur during  the surgery. The doctors that do this surgery use only the most modern micro surgical techniques, and you can be assured that your children can plant an acorn in the back yard today, grow the oak tree, and use that "old oak tree out back to make Mom's coffin." You will live to see your grand kids!

James

Thank you for the reassurance James.  It is a rather fitting example.  Last fall my son planted an acorn and the tree is about 2 feet tall now.    ~Heidi