new as AN patient

[MichelleN]

Like i said, I am new to this. I was just diagnosed in February and I am scheduled for surgery in April. I will be having my surgery at the University of Pennsylvania Hosp. I am confident with my doctors as they do these often. The difference is my head and my side affects.I am very concerned about the side affects of the surgery. I know I will lose all my hearing in the right ear, but I am concerned with facial paralysis and eye difficulties. I would like to hear some positive feedback since all I have been able to read is negative. SOME HELP PEASE.

[Palace]

Hello:


I have read of successful surgeries but, what was the story on you?  Can you not consider the CK?  (or something else)  How big is that tumor, again?

You'll get there.  The deciding and waiting is sometimes the hardest part.



Palace

[jtd71465]

I had surgery on January 10th this year.  I took no complications...face is fine...tumor was totally removed...I just have decreased hearing on my right side.  My surgery was only 3.5 hours long...I had it done at NYU Medical Center, if placed in the same situation I would not do anything differently.

I'm at 80-90% and getting better each day.

Stay positive, I also had the same issue prior to surgery...it seemed like everything I was reading was negative.

Joe-

[rebarman]

Welcome to our "club" Nobody wants to be here, but you will find that the people here are friendly, knowledgeable, and always willing to lend support, information, or just a shoulder when you need to vent. I haven't been here that long, but I know without a doubt, that the information I received from the posters on this board before and after surgery made the whole process much, much easier.

Let me start by saying everyone one here is different, and their recovery/post-op experiences are just as different.

I had my surgery on Jan 29th of this year at Emory University Hosp. in Atlanta. My AN was only half (1.5cm) the size of yours, but here I am just shy of 6 weeks later and everything has returned to normal. In fact. it has pretty much been that way for 3-4 weeks now. 2 weeks after surgery, the DR's said that I was okay to drive as long as I used good common sense about it. Start out slow in areas with no traffic, build your way up. I had a slight facial paralysis but that has since gone away completely. My left eye did experience some dryness, but thanks to a heads-up from another poster on this board (Obita) I carried drops with me everywhere and that solved my problems. It still gets dry sometimes if I work longer than usual, or if I sit at the computer more than I probably should, but a few drops and all is well. Walking and balance has returned to pre-op capabilities.

As I said everyone is different and here's it to keeping my fingers crossed, that yours works out just as well.     

[krbonner]

I had translab surgery (6 months ago next week) and you'd never know it.  No facial problems, no eye problems, no headaches (beyond normal for raising 2 energetic little boys!), no real balance problems, etc.  I am deaf on that side now, but I was 90% deaf pre-op.  Tumor is supposedly completely gone.  By 4 weeks post-op, I was about 80% recovered.  By two months, it was close to 100%.

While no one can guarantee a particular outcome for *you* (even if you do thorough research and select the treatment and physicians that are well qualified for your case), there are a lot of us around who have had no complications post-op. 

Good luck!

Katie

[Jim Scott]

MichelleN:

Although I regret learning that anyone has been diagnosed with an acoustic neuroma tumor, because you have, you've certainly come to the right place.  Welcome.  You want success stories?  Here's mine:


I was diagnosed with a large (4.5 cm) acoustic neuroma tumor last May.  After a discouraging consult with the neurosurgeon my PCP recommended, the second neurosurgeon I consulted was throughly experienced (30+ years), seemed highly competent, compassionate and very concerned that the AN was beginning to press on my brain stem and had grown to the point where my brain had actually been pushed to one side.  He suggested that surgery be performed ASAP.  He recommended surgery followed by radiation (FSR).  I made it crystal clear that avoiding damage to facial nerves was my utmost concern, as I had no problems in that area, pre-op. I had read the accounts of surgeons removing the AN tumor while the patient suffered facial paralysis and other negative outcomes.  The neurosurgeon acknowledged my concern and told me that this approach (surgery followed by radiation of the remaining tumor) would have the best chance of avoiding facial paralysis while successfully removing/killing the tumor.  He was very optimistic - and so was I.   It turned out that our mutual optimism was well-founded. 

As my signature shows, I had the retrosigmoid AN removal surgery (about two weeks later - no time to waste) and came out just fine.  Just over 4 days in the hospital and no facial nerve damage, CSF leaks, etc.  I was driving two weeks after the surgery and resumed my normal routine within about 6 weeks of the surgery date.  I'm retired so I had no job obligations to be concerned with...a big help in my recovery, no doubt.  My wife was a rock.  Four months after my surgery I began my planned Fractionated Stereotactic Radiation (FSR) treatments (26 in all) in mid-September and finished by the second week in October (2006).  No complications there, either, I'm happy to report.  Oh, I have a few minor symptoms that linger: occasional 'dry eye' (not often) and a few tiny 'numb' spots on my tongue and lip but I attribute those to swelling of the remaining tumor that normally occurs within a few months of radiation treatment, as - I hope - necrosis begins to take place.  My balance is very close to what it always was (pretty good) and I have no trouble walking.  Yes, I lost the hearing in my left ear (the AN side) but that had gone some years earlier while I blissfully ignored it, assuming it was simply an 'aging issue' and nothing to worry about.  I've adjusted to single-sided hearing at this point.

No one: doctors, the people on this forum or anyone else who's being honest can guarantee your specific outcome.  It's brain surgery.  Very delicate and complicated, as you know.  We're all unique.  Having a surgical team with much experience in AN surgery is a big plus, in my opinion.  As with any surgery, being in good health pre-op is also a factor.  I wish I could promise you that you'll do just fine, as I did and many other AN surgical patients do....but I can't.  With experienced surgeons and a positive outlook, I think you're in good shape for the upcoming surgery.  Many of us do well, with few complications.  I trust that you'll be one of us, soon.  I wish you all the best.  Stay strong - and positive.

Jim

   

[Crazycat]

Well put Jim!!

   Paul

[Obita]

Hi Michelle and welcome:

I am another success story.  No long term problems at all except for the deaf in the left. 

The temporary stuff was the usual taste disturbance, facial weakness and dry eye.  All of that was no big deal and it all resolved in a few months.  My tumor was 2.5 cm so my good side had already compensated.  I didn't even have balance problems post op except for the first time they made me stand up........whoaaaaaaaaa.  I walked to the parking ramp without help on the third morning after surgery.  And as a bonus, I never had a headache.  Not even one.

You will need help with your children though.  The fatigue after surgery is something you should be prepared for.  Naps, naps and more naps will heal you.  Also, you will have lifting restrictions for a while.

If you have not read this on here I will tell you.  Many people with A+ outcomes never post after surgery.  That is why the good stuff is a little harder to find. 

Good luck to you and please write to me if you have any questions, Kathy

[krbonner]

You will need help with your children though.  The fatigue after surgery is something you should be prepared for.  Naps, naps and more naps will heal you.  Also, you will have lifting restrictions for a while.

Good point, Kathy.

I had full-time, live-in help with the kids (my mother) for 4 weeks post-op.  I had part-time help (friends who would come for a few hours) for an additional 2 weeks.  And I didn't cook anything for 6 weeks - my friends organized a food brigade so that every other night someone showed up with a full supper for all of us.  That was amazing, and made a huge difference.

Katie

[Shrnwldr]

All of you have made excellent points and I also concur. Everyone is unique thus everyone outcome is different. 

I see my neurosurgeon in one week.   Then it is all about setting a date and moving forward.

[Evan]

Hi Folks:

My name is Evan.  I was diagnosed on Thursday with a right sided, AC, 1.5 x 1.  Some minor hearing loss (only determined after tests following an Ear infection).  Some very minor facial paralysis, like a Bells Palsy.  Starting next week to get treatment options, but my own Doc says that based upon the size and lack of major symptoms and my age, surgery may be the best option.  But will have to wait to see.  I live in NYC and know that there are many good docs here.  I would appreciate any advice/thoughts that anyone may have.  It is scary, but the more I read the more hopeful I am that as soon as I select a treatment and get it done (or not done), the more I realize that it is just another bump in a road that has had many.  Thanks for all of your support.

[IAHeel]

Hi Evan,

Hang in there. No doubt there are fine docs in NYC. If you want a second opinion, you might check out the House Ear Clinic in LA. You can send your MRI there and talk with them on the phone. They also do a lot of research that is summarized on their site. Drs. Friedman and Schwartz did my wife's translab and they are world class. They will also do GK.

Good luck,

Fred

[Boppie]

Well Newbees, Keep on reading here.  I had great success and have encouragement for you. I am 65 and tumorless today.  As you can read from my signature below, I had translab.  I had a 4 day stay in the hospital, walked the halls on day 2, had no leaks, infections nor drug problems.  My balance recovery came very quickly.  I was able to take care of myself post op under the loving eye of my family.   I drove at 2 weeks.  I rode my bike in week 3.  Facial weakness and fatigue left me very quickly.   I was helping my daughter stage and clean her 2 story house for sale just four months post op.  My lifestyle is completely on track.  I have a deaf ear, but I have moved ahead with a bone conduction hearing aid.  My social life is as good as ever. 

[sharibari]

I too am also new to this diagnosis AN, I found out Monday 03/05/2007. Unsure of the exact size but it is over 2 cm and I have opted for surgery which will take place June 4. I too have the exact same worries, however I am already having facial numbness, my doctor seems confident that all will go well. He said he specializes in this type of surgery and he is the CEO and co-founder of the California ear institute in California, It will take place at Stanford Hospital. I appreciate some of the success stories as they are encouraging.
Shari

[Desilu]

Hi,

I too have a success story to tell.  I had surgery at HEC in July 2005. My tumor was small and actually as Dr. Hitselberger said it was "sitting on top of the nerves" so it was very easy to remove. I was in and out of the Hosptial in 4 days. I was off work for 8 weeks and had temporary facial paralysis and dry eye. When I went back to work, no one could tell that I had surgery. My only problem was that my hair was shorter on one side than the other. As someone stated earler, some people that have successful AN surgeries move on with their lives and don't bother to post anymore. There are success stories out there.  Hopefully we'll be reading about yours soon. I wish you the best!  Ann