Gamma Knife vs. Surgery

[YYZAN]

TW:

As I am new to this, how can you say that surgery would have left you deaf?  My ENT is saying that I have a good chance of hearing retention with surgery.

Also, can someone tell me what it is like to function with SSD?  I am tempted to stick an earplug in my ear for a day or so to see if I could cope or adjust.


Thank you all again for your information.

[leapyrtwins]

I can't speak to TW's particular case, but yes, there are surgical approaches that help you retain your hearing.  Mid-fossa is the approach with the biggest chance, followed by retrosigmoid and translab.

As for being SSD, one of the biggest issues IMO is lack of directionality.  You can hear something, but have no idea where it's coming from.  For example, if you are standing in a bank of elevators, you'll hear one "ding" to tell you it's coming, but you'll have to spin around in circles and look at the lights to see which one it is 

Another issue is someone talking on your deaf side.  You can't hear them.  You get to the point where you try to position your body so that people are on your "good" side by either picking the "best" spot at the table or by constantly turning your body so your good ear is the one they are speaking into.

Holding a phone to your deaf ear is pointless.  Hearing in noisy and crowded rooms isn't workable either.

Everyone adjusts to being SSD differently.  Honestly, there are those who adapt just fine and don't have any issues they can't deal with.  Then there are those like me who "go down kicking and screaming" - as in I hated being SSD and found it very depressing.  The day I did the BAHA demo I realized that a majority of my SSD issues would be solved - and my depression basically flew right out the door.

Aids and implants aren't for everyone, but some of us couldn't exist without them.

Jan

[Jim Scott]

As I am new to this, how can you say that surgery would have left you deaf?  My ENT is saying that I have a good chance of hearing retention with surgery.

Also, can someone tell me what it is like to function with SSD?  I am tempted to stick an earplug in my ear for a day or so to see if I could cope or adjust.

YYZAN~

Fortunately, Jan ('leapyrtwins') offered a very good explanation of what SSD is like and why TW might have stated that surgery would have left her (single sided) deaf.  I'm sure that TW will soon post her own explanation that will be far more articulate than any I might give so I'll leave that to her.  However, I did wish to add my comment that some AN removal surgery approaches, such as the Translabyrinthine approach, necessitate the cutting of the nerves associated with hearing (and balance) on that side of the skull. This surgical approach is most common and supposedly gives the surgeon the best 'view' of the tumor.  If a doctor tells his AN patient that 'Translab' surgery is their best option, that patient can be assured that on waking up from the operation, their AN may well be gone but they will definitely have lost the ability to hear in the AN-affected ear.   

Jim

[Tumbleweed]

First of all, I haven't had a sex change and the last time I checked I was a guy.  I just checked again. Yup, I'm still a guy. 

YYZAN, I was speaking specifically about my case and not in general terms when I said surgery would've left me deaf on my AN side. Many people have surgery and don't lose any hearing. In my case, the size and location of my tumor led every one of the neurosurgeons I consulted to tell me there was over a 99% chance that surgical resection would leave me SSD. Even with retrosigmoid approach, this was the predicted outcome.

It was this prognosis and my strongly stated preference for hearing preservation that led every one of the six doctors I consulted, including the highly esteemed Dr. Derald Brackmann (pioneering brain surgeon at HEI), to recommend I have radiosurgery. It turned out to be a great choice for me.

Best wishes,
TW

[YYZAN]

Thank you all.  Talked to my GP yesterday who told me a horror story about a patient of his who had surgery.  I am now more confused than ever.  I am going on holiday to the Grenadines tomorrow with my kids and will drink rum lie in the sun and process.  I then have two more consults when I get home, one with another surgeon and the second with another ENT.

Then hopefully make a decision I can live with.

[Tumbleweed]

It's good you are getting so many professional opinions, YYZAN. I got six! By the time #6 came back to me, I already knew for certain what form of treatment I wanted. I heartily recommend people with an AN consult as many doctors as they need to (and at least 2!) to get clear for themselves what course they want to take.

The vacay is a good idea, too!

Best wishes,
TW

[leapyrtwins]

Thank you all.  Talked to my GP yesterday who told me a horror story about a patient of his who had surgery.  I am now more confused than ever.  I am going on holiday to the Grenadines tomorrow with my kids and will drink rum lie in the sun and process. 

Don't let "horror stories" scare you.  Each case is unique and you can't base your outcome on anyone else's.  Just make sure you follow the ever important rule of "make sure whoever treats your AN has plenty of experience".

Lots of professional opinions are a good thing, if that's your style.  Sometimes it just muddies the water, but you should do what is best for you.  Follow your gut and talk to as many doctors as you need to in order to make the decision you are confident in and comfortable with.

The rum and sun sound wonderful.  Wish I was on holiday

Jan