more confused than ever

[elderbirds]

I just returned from a consult with ENT and Nuerosurgery, and fiinished a phone consult with another Neurotologist.  Everyone (including myself) feel that surgery would be the most prudent given my age and general state of helalth.  When it came to surgical approach and why they all felt very differently.  One felt very stongly that retrosigmoid was best as there was a chance to preserve hearing.  Another said he would only do mid fossa to preserve hearing (although I thought I was not a candidate for that approach per another surgeon), and lastly one said my hearing was unuseful and translab would be best with regards to removing entire tumor.  They all state they have had equal experiences in all types of surgeries.  I have been reading abstracts on all these opinions, and they all have valid points and data to back them up.  Hence, I am more confused.  THey all have been supportive and said they would do whatever I wanted (except one really discouraged retrosig).  I have two more consults next week, so those  poor guys will be grilled with the most questions.  Interestingly the Neurotologists seem to have the stronger opinions, and the Neurosurgeon seem to go along with whatever they recommend.  Has anyone run into this problem before?  Also one of them wants to do a ABR and ENG test has anyone had these done(the ENG does not look like too much fun)
Hope

[Kate B]

Oh my gosh, yes, it was confusing because of the mixed messages you get from the various doctors. I had one doctor get mad at me for asking questions and he told me a doctor may not do the right thing because I was so interested in trying to preserve my hearing. (Needless to say, I did not use that person)

There is a thread started about a guide to the decision making process that you may find helpful.
http://anausa.org/forum/index.php?topic=5786.0

I can tell you that because a diagnosis of AN gives you time to study your options, I took advantage of that and had surgery six months after diagnosis. During that time, I read all of the posts and looked for patterns relative to the various surgeries and radiation treatments.  I looked for patterns in the postings relative to facilities and doctors.

I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.
Here is a list put together. The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/

Tumbleweed also has a list under pretreatment options.http://anausa.org/forum/index.php?topic=5783.0

All the best,
Kate Besserman

[OTO]

elderbirds -
From what I remember the ABR and ENG tests weren't that bad.  The ABR is just like a regular hearing test, except that they attach electrodes to your face, neck and maybe scalph (just like little bandages).   It records the signals going to your brain while you do the hearing test.  The ENG has to do with measuring your balance.   You lie down on a table, and they put goggles over your eyes.   You have to follow the lights with your eyes.  They also inject some warm and cold water into your ears.    I think the table might tilt a little bit too.   They measuring your balance response.   Some people might get alittle dizzy or feel nausea.     For me it was no problem...  I think they tell you not to eat for 2 or 3 hours before hand.    After the test, I went right to lunch and it was no problem...

Regarding what type of microsurgey.   Keep getting second opinions, and then think it over.   Choose what feels right for you...   everyone has a different comfort level with their surgeon and its a personal decision.    Best wishes...

[leapyrtwins]

I agree with OTO.

Do what you think is right for you - after educating yourself on the possibilities.  In the end, your confidence in your decision and in your doctors will give you a comfort level that will minimize your nervousness and anxiety.

Good luck,

Jan
 

[sgerrard]

Hi elderbirds,

Doctors with strong opinions? Yes, I think you will run into that quite often in the medical business. Very few of them of are shy. 

I had the ABR and ENG tests, and it was fine - in fact, more pleasant that a typical morning at work.  The woman conducting the tests was very careful and courteous. The ABR was easy, they put a headphone on that clicks in your ear, with some wires on you. The ENG test I had was also the one with the goggles on to video my eye movements while I followed dots or they put water in my ears. Watching the video after was fun, it just showed the two eyes, no nose in between, so it looked quite funny. The tests are useful for determining what kind of function your hearing and balance nerves have.

My impression is that the neurosurgeons tend to favor retro-sigmoid, while the neurotologists favor the trans-lab approach - I wonder if that is what you found? At least they are giving you some choices, sometimes people just get told one thing and have nothing else to go on. I suspect that as you continue your consultations, and find more information, and get a chance to think it over, one of the choices will begin to emerge as the one for you. Just give it a little time.

Best wishes, Steve

[elderbirds]

thanks Steve,
So far I've had one ENT say retrosigmoid, one refuse retrosigmoid and recommended translab, and the 3rd start with translab and then looked at my hearing test and said retrosigmoid.  I've only talked to one neruosurgeon so far, and surprising to me he said he do whatever I wanted! this just adds more questions to my list for the next few consults.  I know with the more info gained and the wonderful supports on this site i will come to a decison that I am comfortable with.  Right now, I am going to Disney World with my family and will re-think things when I return.
Hope

[sgerrard]

So far you've got 1) First ENT says retrosigmoid; 2) Second ENT says no way retrosigmoid, definitely trans-lab, oh wait, here's your hearing test, make that retrosigmoid; 3) a neurosurgeon who says he'll leave it up to you, the person who knows the least about brain surgery. I  think any normal person should be confused at this point. If you have decided that the best thing to do is pack your bags and go to Disney World, then I think you are finally coming to your senses about this thing.   

Don't forget to go on living your life, there's plenty more living to do. This is just one hurdle to deal with, it should not rule your life. Have a great trip!

Steve

[Kaybo]

elderbirds~
Hello from Texas!  As I have said before, I know nothing about all these new approaches b/c a) I had my surgery 12 years ago & b) my tumor was so large and pressing on my brainstem that they had to get it out immediately BUT I would be glad to listen and share my experiences.  I did have a translab and obviously have some things to deal with but have a wonderful and full life!  Let me know if you want to discuss anything!
Good luck in your decision1
K

[ppearl214]

Hi Kay,

Boy, modern technologies, esp. for AN treatments, have really changed over the years.... which really tickles me that the medical community seeks out new/improved ways to treat AN's.  Much to read here about the advances over the years and glad to see you sharing your experiences as well.......

Phyl

elderbirds~
Hello from Texas!  As I have said before, I know nothing about all these new approaches b/c a) I had my surgery 12 years ago & b) my tumor was so large and pressing on my brainstem that they had to get it out immediately BUT I would be glad to listen and share my experiences.  I did have a translab and obviously have some things to deal with but have a wonderful and full life!  Let me know if you want to discuss anything!
Good luck in your decision1
K

[4cm in Pacific Northwest]

Elderbirds,

What is the size and location of the tumor?

4

[lori67]

Elderbirds.

As others have said, the ABR and ENG aren't bad at all.  Don't worry too much about those.

I think Disney World is just what the doctor ordered - maybe some time away from "reality" will be good.  Enjoy your time with your family and give my regards to Tigger.

Lori