New member - would appeciate input from others

[BarbB]

Hello, all.  I am new to the discussion group.  I could use some input from people with experience, since I need to make some decisions in the next few weeks.

I have a small (1 x .9 x .7 cm) AN.  I am scheduled for surgery on Jan. 16th. I had my last planning appointment with the doctor last week. The hearing test now shows only about 30% speech recognition, a significant deterioration in just the past 2 months.  So far, I have no facial nerve involvement (knock on wood).  After this hearing test, we had another discussion about which approach is better, trans-labyrinthine (resulting in total hearing loss), or sub-occipital (with a 50% chance of keeping what hearing I have, but with no improvement).  The doctor is now recommending the trans-labyrinthine approach, but he is leaving the final decision up to me.

I have had occasional migraines for many years.  I get them once or twice a month, but I can just take a pill and they usually go away.  I understand that there is a risk of chronic migraines after sub-occipital surgery, but not after trans-lab.  Also, with the trans-lab. approach, the surgeon can see the facial nerve throughout the surgery, so less risk there.     

I have pretty much decided to go ahead with the trans-lab approach, but I just hate the idea of voluntarily giving up what is left of my hearing in that ear.  On the other hand, I might actually be better off without that ear.  The sound distortion in that ear (and it seems like it is even amplified)  interferes with my overall hearing to the point where if there is background noise, I actually hear better with that ear plugged.  Also, they are saying that it is simple to later do an implant that would transfer the sound from the deaf side to my good ear.

I think I know what I should do, but I’d appreciate hearing others’ thoughts, based on your experience.  Thanks.

[arizonajack]

Welcome to the club that nobody wants to be a member of.

I have a small AN. When diagnosed in 2012 it was 3mm x 4mm x 9mm. At that time I had already lost 90% of my hearing on that side and it was completely gone after a few more months. I had a second MRI about 6 months after the first and the tumor had grown by about 20%. I chose Gamma Knife radiation which took place in January 2013. I'm almost 2 years post GK and, except for still being deaf in that ear, I'm pretty well recovered.

With a small tumor like yours I'm wondering if you considered radiation during your research. It's not for everybody but it's a good option.

Given the rapid deterioration of your hearing over the last couple of months my guess is that you're destined for SSD (single sided deafness) regardless of your choice of treatment. It's rare that anybody recovers hearing once much of it is lost.

You'll get a lot of encouragement here and lots of good information.

[trishy222]

Hi Barb. Was Gamma knife radiation discussed as an option for you?

[Susang8]

I had TransLab surgery on Monday, October 27 - it was 9 hours, Dr Rutka (my Otolaryngologist)had to remove my ear canal to make more room for Dr Tymianski (my Neurosurgeon) to get at the tumour, but they got it all, and I have absolutely no eye or facial issues at all.  I was up walking the next day on Tuesday morning at 8am with Physio.  Balance and dizziness were not and have not been a problem.  Later that same Tuesday I did 2 flights of stairs unassisted ( with Physio guy watching) and then passed a series of balance tests administered by Physio and passed them all easily.  Aside from nausea immediately after waking from surgery, it wasn't and hasn't been a problem.  I stayed in ICU after surgery for monitoring until my discharge from hospital on Wednesday morning (48 hours later) and have been doing absolutely fine.  I was back driving at 1 week post-op.

I was back at all of my pre-op activites at 3-4 weeks.  I am now 6 weeks post-op and am doing great.  Most days I forget that I had brain surgery just 6 weeks ago.

The time to do the research and Dr appointments needed to make your treatment decision is a stressful and frightening period.  But somehow you will know what is the best course of action for you.  Just stay positive...ask every question you can think of during your appointments...

The only other advice I would give you is to prepare yourself physically prior to your surgery (if you decide to have surgery) - that is, get as physically fit as you can and do daily vestibular exercises to train your non-AN side of your brain to compensate for any balance issues related to your AN.

I wish you the best of luck on your journey...happy to chat further if you want...

[G8trdude]

Did you consult with more than one experienced AN treatment facility?  There are often more treatment options for those with “small” ANs.

There are a number of experienced AN treatment facilities that will provide a free consultation (e.g., House, USC), which can be useful in gathering information towards making a treatment decision.

Though I see you are scheduled for surgery and may not want to research any further - I do understand the satisfaction and relief felt once having made your treatment choice, and moving on to the next task.

I had no history of headaches, but too was concerned with the (anecdotal?) evidence around headaches following retrosigmoid.  That, and for a number of other reasons, and I had translab surgery two months ago.  Except for the day following surgery, I have not needed to take any painkillers and have had essentially no headaches.

And I had essentially no hearing loss prior to my translab procedure, and am now, of course, SSD.  In my brief experience, it was harder to deal with the thought of being SSD prior to surgery, than it is living with SSD after surgery.

Best wishes to you for a speedy recovery!

[Mimispree]

It seems many of us are repeating the suggestion of getting another opinion, especially from a medical team that offers other options such as Gamma Knife, which is less invasive than Translab.

Best of luck!

[michelej]

My tumor was about 2 cm. It was not diagnosed at my first MRI and after three years it finally was diagnosed and had grown several mm. I had lost most of the good hearing in my ear by this point. I didn't know what to do either. I researched my butt off to try to make the correct decision. I had already lost most of my hearing anyway so the chance of saving anything useful was pretty low. I decided since they didn't have to retract the brain with the translab procedure and could see the tumor and the facial nerve better this way that I would do with that I didn't want to have facial paralysis so losing hearing was a better option for me. I was afraid of anything with radiation because I saw that there was a slim chance of making the tumor become cancerous at some point down the road. (not sure if this is true or not) I didn't like radiation being shot into my head with a chance of hitting something else. I know they say they can pinpoint it well, but still I was afraid of that. I also figured that with radiation the thing actually swells before it hopefully dies off so I didn't know what it might cause getting worse before it got better. I also figured that I would be able to deal better with surgery now when I was 51 rather than if I had to do surgery later when I was older and less healthy. So with all those crazy thoughts in my mind and the fact that I never had headaches and didn't want to risk them I opted for translab. I had no problems with the surgery, was back to work in a month and feel fine now. I have a dry eye and my facial weakness is 98% gone. I had the surgery in mid July. I don't regret doing this. I had my abutment placed for my BAHA and will get that in Jan so I can hear on that side (by transferring sound to the good side) Happy with my decision. Just make sure you ask anything you think you need to and get as many opinions that you want to (not from people like us) from doctors. It is your money, your life. Good luck!