questions about issues pre-operation

[bpham]

I'll have my operation on Oct 8 at the HEI by Dr. Friedman.  I have a few questions.

Currently, even my tumor is small (around 1.2cm), I have lots of issues:

1.  Facial weakness, twitching, spasm...
2.  Loss almost all hearing (12% left).
3.  Dizziness ( is a lot worsen now without Prednisone.)
4.  Pain in the ear.
5.  At night the left head has lots of pressure and seems to be sensitive to the touch. At night, any part of the head resting on the pillow seems to have pressure and it is very uncomfortable to sleep and I kept waking up many times during the night.

Anyone had this before surgery?  If you did, did they give you Prednisone?  I was taking Prednisone until few days ago and when I stopped the symptoms got lots worse.  When I was taking it, I was almost normal with only mild symptoms listed above.  My hearing was a little better during that time.  I asked the doctor to let me take some more but they said that that would weaken my immunity and it is not good for the surgery, but I'm worrying that this may kill my facial nerve and would not recover after the surgery.

Let me know your experiences.  Thanks.

[slaboda]

I had surgery on Monday, September 10th by Dr. Friedman.  I was in ICU for 24 hours then moved to a private room.  I was up and walking by Wedneday and out of the hospital by Friday.  I can not say enough good things about Dr. Friedman, The House Ear Clinic or St. Vincent's.  Everyone was great and took good care of me.  Dr. Friendman worked with Dr. Schwartz and Dr. Stefan. 

My tumor was 1.2 cm and I had the Trans Lab surgery.  My hearing recognition in my right ear was at 0% so I had nothing left to lose.   My balance nerve was only at about 15%.  My tumor was first found in December of 2006.  I had lots of problems with balance and pressure in my ear early on.  Never had any facial issues. 

I also took Prednisone several weeks before surgery to see if it would help with my hearing.  It did a little bit but once I stopped taking it my hearing was bad again.

Post surgery the only issues I was having was with balance and pain.  Which both were expected.  My balance gets better every day.  I'm able to walk a straight line and balance on one foot.  Pain is going away and I think within three to four weeks I will be back to normal.  I can't wait. 

I know everyone's experience is different.  I was very blessed.  For me the worst part was the ENG Balance Test prior to surgery and the catheter.

Let me know if you have any other questions.

You are in good hands. 

[Captain Deb]

Wow all of us with +-1.2 cm tumor and Dr Friedman! My experience is--do what the doc tells you! No more, no less.  Drs Friedman and Hitselburger managed to spare my facial nerve of any damage whatsoever, you would never know I had a tumor glued to it at all--they are the best, so I would to exactly what they tell me to do.

Best of Luck!

Capt Deb

[bpham]

Had a CT Scan at HEI and a visit with Dr. Friedman to review the films.  First time in the last couple of months that I was actually glad to hear he said, "well, good news, it seems to be an Acoustic Neuroma".  Well, the problem was that he thought that it was odd that I had lots of issues with the facial nerve and he just wanted to confirm that it is NOT the tumor on other nerves, in this case, on the facial nerve.  He told me that "You'll be doing well...".

Anyway, last night I had such a terrible pain in the ear which radiated down to my neck and the whole entire head was so sensitive to the touch.  He gave me some tylenol/codeine to take care of that, but no more steroids.

Anyway, just wait for the day to come...Oct 8, to get rid of the thing...

Thanks for all replies.

[4cm in Pacific Northwest]

Quoting you

“and I kept waking up many times during the night.�

I can relate to that pre-surgery symptom. I went to a sleep clinic… the techy there told me to go to an ENT … my AN story started from there. (I can say I am now sleeping better … even having afternoon naps)


It is a good thing that you DR’s clearly think you have an AN. For me the pre-diagnoses was unclear and I had to deliberate between a Translab (TL) or an Retrosigmoid approach as I still has such good hearing. (The surgical route and outcome to be my decision to live with…).Your direction towards the TL is a clear one … and at HEI you will be in good hands. This surgical technique was actually developed there by Dr. House… for a TL you are heading to THE reputable place. Have confidence in that. (People fly there from all over the world just for the TL)


Oct 3 I will be at my 6 weeks post op mark. Remember that the first 4 weeks are the toughest but they DO get better. I am improving daily.

I look forward to someone giving us an update on you. (If you are staying at Seton House there are computers there) You have a bunch of AN forum’ers rooting for you. FYI Oct 8 is Canadian Thanksgiving … and even though I am now here in “the states� celebrating- I’ll be thinking of you that day.


Best wishes for a successful surgery and a speedy recovery.


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[sgerrard]

Well, the problem was that he thought that it was odd that I had lots of issues with the facial nerve and he just wanted to confirm that it is NOT the tumor on other nerves, in this case, on the facial nerve.  He told me that "You'll be doing well...".

It is good to hear that Dr. Friedman says the tumor is not on the facial nerve. You are probably having a lot of swelling in the area, which the steroid would help, but they are not good to take before surgery. It is quite likely that the symptoms (except the hearing loss) will go down when the swelling goes down after surgery. Although not everyone has your symptoms, that area of the head is very sensitive, it only takes a little disturbance to give you an ear ache for instance. Just remember those words, after a little recovery time, "you'll be doing well..."

Have a good surgery, and let us know how you are doing when you are back on your feet.

All the best, Steve

[marg]

I think the hardest  part is waiting for surgery ..... mark the calendar for 6 weeks from the date of  surgery... and as you recover look at it and realize you will be much better by that date....
   In the mean time - we are all pulling for you - you are in my prayers.
Margaret

[leapyrtwins]

Glad to hear that you made a decision on how to treat your AN; I know it's a tough decision to make.

I'll be thinking of you, and praying for you, on the 8th.

Let us know how it goes when you can.

Best of luck,

Jan

[4cm in Pacific Northwest]

I have to tell you Marg is bang on there. She told me to write on the calendar, at 4 weeks, not expect to be walking unassisted -until then. She was right to the day ... and I did not set my self up with unrealistic expectations. Today I am at 6 weeks and am not sporting the totally drunken sailor look anymore. “Far from perfection… me is … mateyâ€?  ::)…but I can now look back and say “yes I have improved over the 6 weeks.â€? Some days it is 2 steps forward one step back … but it is my new AN family that is keeping me sane here.

They call us ‘patients’ for a reason.

We are rooting for you.

“4� (the impatient patient)

[bpham]

I feeling fine after 4 weeks.  started to drive about a week ago.  Thanks for all those who have rooted for me.

[4cm in Pacific Northwest]

Way to go!

It is good to hear from you and you are driving already (I just started at 10 weeks post op)

Glad things went well.

Cheers,
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[leapyrtwins]

Hey, that's great news    I didn't start to drive until 6 weeks post op.  I'm very impressed that you could do so in just 4 weeks.

Keep up the good work,

Jan

[tomano]

Everyday you'll see improvement and get stronger (maybe a few slight setbacks, but always remember how far you've come).
at almost 6 months post op, I have everyone fooled that I am back to "normal". Not yet, but getting closer everyday.
Keep it positive and heal quickly.
peace, tomas

[bpham]

I've started working about a week ago.  No major issue, except a little bit tired at the end of the day since I have to drive about 1 hour back home in LA (not fun with all the traffic), but I'll be OK.

Just got back from the trip to Vietnam with the 18 hour plane ride without any issue whatsoever.  I had to keep yarning to release the pressure but it was like that when I was normal too.  The trip helped greatly since I forgot everything happened with the surgery and just enjoyed and I'm energized to go back to work.

Actually, things improved significantly at the 8th week.  My right hearing is now back 100% with a hearing test 2 days ago (did not know why it degraded 10 days after the surgery) and I'm used to the noise and one-side hearing now.  Sometimes I'm not even aware that I'm SSD, which is good.

Only a slight imbalance left which will be OK after a while.  My facial issue is now almost gone.  MRI is scheduled in 1 year.

Thanks for everyone replies.

[4cm in Pacific Northwest]

Wow you sound fantastic! What a great success story.


Keep moving forward.

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