Not so good Dr Appointment

[deea]

Had doctor appt. Friday to discuss results of latest hearing and balance test.  Not good.  Both were abnormal.  Earlier testing had shown min. hearing loss in AN ear so Dr. was hopeful to retain hearing.  Had thought that my chances would be at least 50/50 and hopefully 80 % or better.  Things have changed.  Now telling me that it is more likely that I will lose the hearing but is still using middle fossa and will try to save it.

I have had a really bad week last week.  Having to be down in bed most of the day, unable to lift my head or even open my eyes at times.  Unable to eat.....Just plain miserable.  When I went to my appointment on Friday along with my husband and sister we were put in an exam room with just exam chair and a couple of other chairs.  After a bit I could not  sit up and was laying my head on the sink, asking my sister to get the nurse to see if they had some where I could lay down.  They moved some poor soul out on the treatment room so I could lie down.  Then nurse stayed with and they switched the patient order so the Dr. seen me next.  I could not move with out feeling like I was going to die.  It was awful, I have never felt so bad in my life.  This is so much more intense than I was expecting.

Bless his heart, the Dr. actually sat down on the top of the trash can so he could talk to me face to face with out me having to move and asked to have the lights tuned off for me.  So much had changed since my last appt.  He asked about  the surg. date, uable to move it up any sooner due to vacations and booking difficulties.  He put me back on high dose steroids for 2 weeks and then taper down, valium, pherergan, and  tylenol #3 for the ice pick pain in the ear.  Hopefully after the steroids kick in the pain will let up. 

It is unbelievable how much better I am today already.  I went shopping with my sister, ate dinner out and shopped some more.  Yesterday seems like a bad dream, how could I feel so much better just a day later!  I have been trying to rest and not do too much, but after the past week it  just seems so wonderful to feel good.  Life is good and I am thankful for each and every minute that I feel good!

Hanging in there, just waiting for the surg. date.  Looking forward to it actually. I want to get this behind me and start on the road to healing.  The doc. has been very honest and straight forward about how rough the days, weeks and even the months after surg. may be, but I am ready, willing and waiting to go.  Not my idea of fun but what has to be done, has to be done.

Will keep in touch, Thanks
Deea

[Pembo]

I'm sorry you were feeling so lousy but it sounds like you have a great doctor!  I too had days where I could barely get out of bed bc of the dizziness prior to surgery. Post-surgery was much better. The dizziness was gone and I could eat and function, even if it was slower.

Recovery will be slow and may bring new challenges but life post AN was definitely better. Good luck to you. and How long until your surgery?

[Yvette]

Keep us posted Deea. Best wishes, Yvette

[Sam Rush]

If they are pretty sure you are going to lose your hearing, then you should consider the easier translab surgery, less chance of facial problems.

Good luck

[NF-2er]

Hi;

   I agree here, Sam. The first thing encountered when performing a Mid Fossa is the facial nerve after the IAC is entered. Surgeons must then work around and under the facial nerve.
   Re, the remaining hearing, if it's already taking a hit and the % odds are going down, I've an idea the remaining hearing will be lost during/after a Mid Fossa anyhow.
   
   NF-2er

If they are pretty sure you are going to lose your hearing, then you should consider the easier translab surgery, less chance of facial problems.

Good luck

[marg]

I had pretty good hearing in my AN ear before my middle fossa surgery (6 weeks ago today) and after surgery lost all my hearing in my AN ear and I have some facial paralysis  -( which is slowly improving).  I did have good hearing right after surgery in my AN ear  ... but 4 weeks later at my hearing test- I  only heard garbled sound and by one week later couldn't hear anything at all.  My neursurgeon said maybe the hearing nerve 'stroked' after surgery.  I am currently dealing with an eye that doesn't close when I blink, a metal taste on the left side of my tongue, 1/2 of a mouth that won't smile (these are all improving slowing)  and a jaw that doesn't open as wide right now (they cut the jaw mussle in a middle fossa approach)... but it too is getting better.   
     Even with these things I am dealing with now... I am not sorry that they tried the middle fossa approach.  I was told that I had a 50 - 80% chance of keeping useable hearing.  It was worth the risk.  I'm glad they tried.  I'm also glad that I didn't 'watch and wait' .  When they got in there, they found that the AN tumor was on my facial nerve too and they had to scrape it off... which is why I have the facial paralysis problems I do.  How much worse it could have become if I had waited and let it get much bigger before I had surgery . 
     Anyway,  once again we all have to make the decision that seems right to us.... there is no   'one right choice'.
Deea, I wish you the best outcome for your surgery..... and although the first several weeks post-op are a real challenge - at least the tumor has been dealt with and you can move on.
Margaret

     

[Betsy]

Hi Deea,

My heart goes out to you in your misery, and I'm also heartened to hear about the kindness and compassion your doctor and his staff showed when they found out how miserable you were.  There are so many ups and downs with this thing, both literally (with the vertigo) and emotionally.  I like your attitude too..."what has to be done, has to be done".  I wish I could feel that certain about my decision!!

Let us know how it's going.

Betsy

[deea]

  Thank you all for your responses.  Believe me, I have done a lot of thinking and researching.  I am comfortable with my Dr. and at this point, my plan is to go with the middle fossa.  The way I look at it, any chance of retaining a % of my hearing is better than zero.  Sometimes you just have to go with your gut feeling, and it amazes me just how calm and ok I am with this.  Not happy, and there are times that I just lose it for, but for the most part I seem to be handeling it better than my family.  My family comes from a medical backround and they are always looking for the best for me.  I appreciate their efforts, but as you well know, ultimately I have to do what I feel is right for me.

The steroids and valium are doing their thing and I feel so much better.  I even plan on calling and getting my grandbaby over for a while tomorrow and the 5 year old later for just a little bit.  He is very ADHD and quite a handful, but he really misses his Nana and his Nana misses him.

Here's hoping that everything stays calm .  Take care.
Deea

[Sam Rush]

Deea

Think about it some more,  saving a tiny bit of garbled hearing is not worth the  increased risk of facial paralysis !!   Single sided deafness is not so bad. It's better than trying to sort thru garbled noises.  If SSD really concerns you, you can get a BAHA or trans ear.  Get some more opinions.  Panel, please help us out here.

[Jim Scott]

Deea:

I have to agree with Sam.  However, this is not our decision to make and I don't want to second-guess you, just offering an opinion.   As an recovering AN patient who suffered from SSD for 2 years prior to my diagnosis and subsequent (retrosigmoid) surgery plus FSR, I can attest that single-sided deafness is definitely a handicap - but hardly insurmountable.  I do just fine and most people don't know I have SSD unless I tell them, which is occasionally necessary, but not very often.  We simply adjust.

Had I managed to keep some usable hearing in the AN-affected ear pre-diagnosis, my doctors choice of surgical procedure and the calibration of the follow-up radiation treatment would have helped me to retain it, while doing everything possible to avoid facial paralysis and other complications that I was mercifully spared, mostly due to a very skilled surgical team that was focused on sparing the crucial nerves that often are damaged during surgery and/or radiation while attempting to destroy the tumor. 

Deea, you have a doctor that I can admire for his concern and compassion.  He sounds a bit like my neurosurgeon, who cleared his schedule to see me on short notice after I was referred to him by a fellow neurosurgeon (who specialized in spinal surgery and didn't operate on AN tumors).  His primary concern was my health (my tumor was huge) and nothing else. Although his services were much in demand, he graciously gave me all the time I needed with him during our initial consultation and acted as if he had nothing else to do that day but see me, explain what he would do if I 'hired him' (as he put it) and schedule a surgery date.  These kinds of doctors are special and, I believe, too rare.  I'm glad you have one like that.

I truly regret that you had to experience so much pain but I'm pleased that medication helps and it has passed.  I think its encouraging that your spirits are once again high, or as high as they can be under the circumstances.  You're right, we simply have to do what needs to be done.  I can testify that time passes quicker than you think.  My surgery was just over a year ago (see my signature for details) and it seems like twice that.  I'm pretty much back to normal with only one or two (very minor) residual symptoms and nothing that I can't either ignore or simply work around, when necessary.  I trust you'll have a similar experience. 

I wish you all the best in the days ahead and I look forward to reading your post-op messages. 

Jim