Hi again; am back with a couple more questions

[Keri]

Hello,
I first posted under this section (AN issues) on Nov 22. I've read all of your answers and really appreciate the input.

I have a 1.5 AN. I'm now scheduled for translab on Jan 29. My doctor said that with the two other type of surgeries I'd most likely lose my hearing anyway, so he thought translab would be best. I'm usually comfortable with my surgery decision, but sometimes I have second thoughts like, 'am I sacrificing what's left of my hearing?" or 'should I do radiation?' From reading here I know some of you have had great success with radiation, but with the way my head feels now (weird... is that the 'wonky' thing?) I would rather have it out... for sure...  I think. Like I said, sometimes I doubt my decision. But if I suddenly decided to do radiation, I think I'd doubt that more.

Some of you brought up some interesting things - I got lots of BAHA info from Jan. Paul mentioned being a musician and losing some of the dexterity on the AN side.  I had never thought about dexterity as part of this AN problem and I'm not looking forward to that!  Donnalyn mentioned some type of musician's aid (or something that blocks out a lot of noise to hear sounds closer). I'd really be interested in knowing more about that. It's like my hearing stinks in my left ear, but at the same time noisy and echo-y environments drive me nuts these days.

My ringing is always there, but I have gotten used to it. My head does feel weird... off balance. It seems to increase when I'm really tired. Is that natural? I'm not really off balance, I mean, I'm not stumbling around, although I feel a little tipsy sometimes. But my head feels weird. Sometimes I have a mild ear ache in my AN ear, and sometimes in my good ear. With these symptoms sometimes I wonder if I'm imagining things, or am just more aware of these feelings.

I've appreciated the feedback from other runners (bikers, etc) about recovery. I'm not a fast runner - you could call me 'back of the pack'. But I've done a dozen or so half marathons and one marathon (killer)! I actually ran a half the other day and was hoping for a good finish because I figured it was my last half before surgery. I actually did the fastest half I've ever done! I was happy with that; I almost cried. My next half is two months after surgery (I signed up for it a long time ago). I don't know realistically if I'll be able to do it but I put it on Steve's calendar (hope it's ok to put something like that on). It'll give me a goal to try to reach.

Thanks again for reading my long posts, and for everyone's encouragement and help - both to me and for everyone else who writes.

Keri
translab on Jan 29 at University of Maryland in Baltimore with Dr. Eisenman and Dr. Eisenberg

[Syl]

Keri,

I had retrosig to save my hearing. The nerve was preserved, but my hearing stinks anyway. I'm not SSD and hope that a hearing aid will help though my Dr. and 2 audiologists say it may not do anything for me. I may be stuck in a bad place with my hearing. As for the wonky head...I'm just shy of 6 mos post-op and still have a wonky head and I still walk like a drunk, esp when I'm tired. As a bonus I have the headaches. But I don't know that I'd be better off with any of the other procedures. I'm very happy that my facial nerve was not affected and that the tumor is out.

Good luck with your decision.

Syl

[sgerrard]

Hi Keri,

First a correction - the calendar is our calendar, not mine. I just work here. 

I can understand that little bit of doubt; I have heard the same thing from those going in for radiation. Dr. Chang at Stanford does both radiation and surgery; Mark, a long time member here, says that as he was entering the Cyberknife room for his first treatment and feeling a little unsure, Dr. Chang offered to book the OR for him instead, right on the spot. "Nevermind" was pretty much Mark's reply.

I think it is natural to have that doubt, but it is the choice that you keep coming back to, the one that really sticks, that you have to go with. If I had done surgery, I think I would have done translab, and given up the hearing. It is harder to preserve it when it is already down 50% before treatment, and translab has always seemed to me like the safest approach.

As for your half marathon in March, it might be a little early, but even if you just show up or walk it, I will be impressed. A few months after that I think you will be right back in the pack - even if it is at the back.

Steve

[wendysig]

Hi Keri,
To put it bluntly, the AN diagnosis stinks and whatever treatment choice you make is something you don't really want to do, just a decision you;'ve made since you have to make one so doubts are not unusual.  My best advice to you is that since you've made that choice dont second guess yourself, you can drive yourself crazy.  When I was first diagnosed and started researching this thing, my first gut reaction was surgery, then radiation, then surgery, which I had (translab).  I was one of the lucky ones and had a very good outcome, but even if I hadn't, I knew in my heart this was the right choice, no matter what.  Once I made that decision I was no longer afraid -- I knew if there were issues to deal with, I would be able to deal with them.  That feeling of confidence made the time before surgery a lot easier to deal with.  I hope this happens for you.

As for wonky head, you probably do have it, I know I did  prior to surgery.  If you feel like you are noticing things llike that more now, it its probably not in your head (no pun intended) but because you probably brushed them off before as inconsequential.  Regarding running half marathons, first of all, congratulations on running your best time ever.  Two months post-op sounds optimistic, but you never know!

Best wishes,
Wendy

[texsooner]

Keri, congrats on running your fastest time on the half marathon...that's awesome. I'm with Steve, March may be a little early to run that distance again, especially if it's early March(since your surgery is Jan 29). I recovered pretty well and started back running about 4 weeks post op, but no way could have run 13 miles at that point. I am a firm believer in setting realistic goals to attain something like running in an event again.....like Steve said, you may want to walk the one in March if you're up to it.

I am going to try another half marathon next month myself and feel pretty confident about finishing it ok. Good luck to you on your surgery.

Patrick

[Omaschwannoma]

All here gave good advice on your "doubts", so I will touch on the "hyperacusis" you experience.

I use a muscician's plug to block noise coming into my serviceable ear.  This plug has three filters and I chose the middle one to block out background noise, but still can hear the person next to me talking.  This works great in restaurants or walking outside to keep loud buses, trucks, motorcycles and wind causing vertigo symptoms (I am blessed with Tulio's Phenomenon--noise induced vertigo).

I purchased one for, approximately, $80 from my audiologists office.  They squirt goo into your ear and this makes for a custom molded plug vs the screw type which are for swimming and can impact ear wax (that is why I chose to get the muscician's plug).  After your surgery you may find you will need a plug for your good ear as SOME people have found their serviceable ear becomes hypersensitive (hyperacusis) to everyday noise. 

[fbarbera]

One thought to help put your doubts to rest would be to have a thorough consultation with radiation doctors to get answers to any lingering questions you might have.  If after that consult you still know surgery is the way to go, you might feel even more confident in your decision. 

Best regards,
Francesco

[LADavid]

Hi Keri

I don't have much advice on your surgery decision but I am always there to give a fellow half-marathoner advice.  I'm with Patrick and Steve.  March may be too soon.  My surgery was last December.  I really didn't feel much like running (it's a balance thing) until April.  Comfortably ran a 5 K in May.  Then started training for a Half in June.  I was up to 10 mile runs by the beginning of August.  I may have been able to make it that far sooner.  But not by much.  Realistically, it will take you about two months just to recover -- so training may be out of the question.  But I'm with Steve.  Walking it would be a great goal.  Keep it on the calendar.  It's something to shoot for that we can all encourage you.

David

[bell]

Hi Keri, I am 2 1/2 weeks post op.  It is a very difficult decision but do not 2nd guess, it will drive you crazy.  I could not decide either one and one DR. said translab the other Dr. said retro.  The Dr. that I chose at the Mayo leans alittle toward GK but could not guarntee me anything down the road.  Since I am 45, good health, we opted for retro.  He wanted retro since my hearing was so good.  Guess what, the hearing nerve was preserved but I an deaf, so...  He told me 50/50 going in.  I truly trusted him and I know he did the best he coud.  The facial nerve was preserved but pretty messed up.  I have numdness, paralysis and eye closure issues. I am confident things will get better.  The Dr. informed 90% 6-12 months down the road.  I am recovering and relaxing!  Waiting for a Neew Year,   The best of luck to you and make sure you like your Neurosurgeon. Bell