Treatment options and side effects

[jphua]

I have been diagnosed with AN 1.9cm (right ear). Need to make a decision on the surgery options.  Translab, retrosigmoid or Middle Fossa.  Since I still have hearing in my right ear, debating whether to take the invasive approaches (retrosigmoid or middle fossa) or give up the good hearing to avoid touching the brain.
Any comments based on experience of these invasive methods appreciated.  Particularly, the recovery and types of side effects (headaches etc.). 
Thanks

[cindyj]

Hello and welcome!  Treatment choice very often comes down to personal choice...and at the size yours is, you do have time to make that choice, fortunately.  All three types of surgery certainly have risks...I did choose Translab knowing I would lose my hearing (which was perfect) as I felt it was the right way to go in my case.   You did not mention that your are considering radiation as treatment?  Just want to be sure you are aware that it is an option also...though it also can have "side effects," there is usually very little down time, and a good chance of hearing preservation, depending on your particular situation. 

Recovery from surgery varies from patient to patient, but in general we all take about 4 - 6 weeks to recover.  I was completely exhausted and incapable of doing much of anything for two weeks, but then very quickly improved after that!  No headaches, was nauseous the first week or so, though.  Yes, I'm deaf on one side and I won't be doing any high wire acts, but I do everything else (and more) that I did prior to the AN surgery   Sometimes a bit woozy (we call it Wonkyhead around here), but I just carry on, refusing to let it keep me from anything I want to do.  Life is very good!

Treatment decision was the toughest part of this journey for me, as it is for most we hear from.  Take your time and ask many questions and be sure your doc, whoever you choose and whichever treatment you choose, has much AN experience. 

Take care!

Cindy

[nftwoed]

Hello jphua;

  Just my opinion, but I'd opt for middle fossa in attempt at saving any hearing you can. Even a small amount of hearing is better than no hearing that side ( my opinion ).
  My personal feeling is that potential cognitive dysfunction from brain retraction during MF is overstated and transitory at best. I've never read a case of permenant, severe, cognitive disorder.
  I'm unsure your age, but it is somewhat risky to live with SSH for many, many years.
  Best wishes for a choice you feel comfortable with. Please remember a Translab is not easy either, though it does offer an excellent facial nerve view.
  If you choose MF, you need a neurosurgeon, neurotologist team well experienced in the somewhat tricky procedure perfected by House Ear Institute. Of course, HEI Drs also perfected Translab.

[Peggy Sue]

Hi. Brand new to ANA Forum and this is my first post.    I'm in the same boat as you. Found the tumor via MRI March 15 and although about the size of yours its growing fast based on an MRI 3 years ago showing nothing. I did a ton of research on all treatment options as well as GammaKnife and saw 3 neurosurgeons (all came highly recommended). My hearing is diminished but not gone, my spacial orientation (dizziness) is so bad I am unable to walk alone at this point (getting worse every day) and the headaches are wicked. To throw an added 'bummer' into the whole mess is that I have MS (15 years) which will be adversely effected no matter what I do. So... I'm having Middle Fossa surgery on June 15. I've told the doctor my main concern is preserving the facial nerve. Vain of me I know but I'd rather loose my hearing than that nerve. Being told surgery will be 8 hours which I'm not dealing well with as I'm fearful of anesthesia and 'coming out' since I've had a bad experience (think it was the doc more than anything). Something kinda cool - I have long straight hair (down to my waist) and haven't had short hair since 8th grade when I started growing it out. Anyway, in a show of solidarity my son is going to have his head shaved when I do. He really touched my heart when he told me that. I'm 47, female, married 27 years, 2 kids in college and hoping to find some wisdom from those who've been through this already.

[mk]

Hi Peggy Sue and welcome to these boards.

I am not going to comment on the surgical approaches, just wanted to say that most probably you don't need to shave your hair. Nowadays they only shave as much as they need, and if you have long hair it may be not noticeable at all. In my case they actually didn't shave anything, just "glued" the hair on both sides of the incision.

Marianna

[RichB57]

I'm a newbie to the forum as well.  I've been hanging back reading stuff, but didn't really feel like I knew enough to comment.  But. since I'm almost 4 weeks post op, I'm becoming knowledgeable.  I'd suggest reading as much as you can on this forum.  I read a lot before making my decision, but wish I had read even more.  Get second and even third opinions, and really question the doctors on why they recommend a particular procedure.  Finding a good surgical team is key.  I live in Connecticut and decided to go with Drs. Barker and Lee at Mass General.  The surgeon I was initially referred to in CT recommended Translab because the hearing in that ear "wasn't very good".  I did my own research on what the hearing test meant and found my hearing was borderline good to excellent.  Based of my hearing test, Dr. Lee recommended retrosigmoid surgery.  Unfortunately, the blood supply to the acoustic nerve was lost during the surgery, so the hearing is gone, but at least with retrosigmoid there was a possibility the hearing might be saved. 

I had no other complications immediately post op, but developed facial paralysis about 4 days post op. The fact that I had no paralysis in the first few days showed the nerve was fine, so the paralysis is most likely due to swelling, which should subside with time. I'm still wonkyheaded, but it varies, and it's gradually getting better. The other thing that I don't see mentioned much in the forum is balance.  I practice yoga and karate, and losing my balance would have an enormous impact on my quality of life.  I did need a walker to get around for about the first week, and am still a little shaky walking in the open, but in all my balance is still very good.  I know someone in my area who had translab 10 years ago and still mountain bikes, so even with the total loss of balance on one side, you can make adjustments.  In my situation, I still feel retrosigmoid was the right choice.

[Sue]

Well, you could always go the non-invasive choice and do radio-surgery.  It's another option to consider.  Talk to a doctor who has considerable knowledge of that, and then you will have all the ducks in a row, and you can go from there.

Best of luck to you, which ever way you jump.

sue in Vancouver, WA USA

[leapyrtwins]

My opinion, if your doc gives you the choice of mid fossa then go with it.  As someone else mentioned, the mid fossa approach gives you the best odds of saving your hearing; if it's worth saving.

Not all of us had the option of the mid fossa approach, due to size and/or location.  

Jan

[jaylogs]

Hi there and welcome to our club!! I echo the previous comments about Middle Fossa.  I really haven't seen too many of these done on here lately, but I personally had great success.  I was out of work for about two months, and was able to keep some hearing.  It's not good enough to hear someone clearly, but I can HEAR, which is good for directionality purposes, if nothing else. Plus I can hear pretty decently with an iPod earphone in it...still getting stereo.  I am in the process of getting a baha to help with the speaking part.  I had mine done at House, couldn't have had better treatment, and I felt really good about letting them in my head.  I did experience some dizziness post op, but that's pretty normal. Like I said though, for me it was a minimum two months before I got back into the workforce again, but in hindsight I should've waited it out a little bit more.  Good luck with your research and hope all goes well!  PS: Not sure if you know it, but you can send a copy of your MRI disc along with recent hearing test to house and they will call you for a free consult over the phone...well worth it!
Jay