Results of My Appointment

[lrobie]

I first should begin with telling you I did NOT have a good day yesterday.  My MRI was first.  It lasted way longer than normal.  Toward the end, I looked thru the mirror and could see several people in the room behind the glass who were staring at the monitor.  That was a very scary moment.  Then the technician came out and said that they were going to put this pulse rate thing on my finger and take a couple additional images.  That, in and of itself, caused my pulse rate to go up.  I still don't know the exact reason for this, but I'm guessing that the people staring at the monitor were medical students and they wanted to see how my pulse was, being unmedicated for an MRI.

My next appointment was with Dr. Gardner, the Neurosurgeon.  His fellow came in first and said that my tumor really hadn't grown much if at all.  The fellow asked me about my current symptoms.  He also asked me if I still used the phone with my AN ear.  I don't because I miss some of the words from the person on the other end of the line.  I had a list of questions ready to be asked of Dr. Gardner.  When Dr. Gardner came in, he said that he saw that I'm no longer using my ear on the AN side for phone calls.  He went on to say that he uses this as a guide in knowing whether I truly have serviceable hearing on that side...enough to want to try to preserve the hearing nerve.  He didn't think I did and thus, changed the type of surgery that he would recommend.  Now it's translab.  He said the mid fossa would have been more risky with the facial nerve.  Translab, as you know, will rid me of my hearing on that side.  So this is when I felt things went downhill.  I was going in thinking that I was going to go with the mid fossa surgery.  He said he could still do it, but again more risk to the facial nerve.

My next appointment was with Dr. Hirsch, ENT/neurotologist.  At that time, I had my hearing tested.  It went from 88% speech understanding in August 2011 to 64% currently.  Can anyone tell me what I should really be looking for on my hearing test paperwork?  I see dB results.  Dr. Hirsch felt that he would agree with Dr. Gardner with the translab.  He did, however, say that because it looks like I'll lose my hearing anyhow, I could stay in the W&W.  He didn't say much about Cyberknife and I forgot to ask those questions.

I also asked about numbers of surgeries, etc. from both doctors.  Dr. Gardner stated that "we" do about 1-2 a month or about 24 per year.  He does mid-fossa for other problems, not just ANs.  Dr. Gardner performs brain surgeries every day but Tuesdays.  Dr. Hirsch stated that he has done 100's of surgeries on ANs.  He was around prior to radiation being a treatment option.  He has done about 70 Cyberknife treatments.  That is another option, however, I'm not sure about going through a period of unknowns.  That's what I feel right now and it stinks!!  I did not feel as if Dr. Gardner was as compassionate at this appointment, which threw me for another loop.  My guess is that he might have been having a bad day.  It makes me worry that if I say I want mid fossa anyhow, will it make him not be extra careful around the facial nerve?

At this point, I don't know what I'm going to do.  I think I need to take some time to regroup.  I know a lot of you will recommend sending my results to another place or getting more opinions, but I'm getting so tired of this.  It's very stressful and has me worn out.  Especially when you get different answers and become more confused.

I appreciate you taking the time to read through my long post.  I guess it made me feel a little better to type things out.  If you have any questions, please ask.

Thanks,
Lisa

[mindyandy]

Lisa you poor thing. *hugs*
I know the decision process is very nerve racking. I have made my decision and I feel more comfortable, however I'm still very nervous. Dr. Friedman says they are very careful with the facial nerve. This makes me feel good but you know nobody is going to guarentee. It depends on the location of the tumor. I would keep searching till you find one you are comfortable with.
Keep us posted.

[james e]

Anxiety is our worst enemy. I fell asleep during my last MRI. My wife has to be medicated. I sweat bullets in the dentists chair. My wife sees it as a social visit. Go figure.

Now, what are YOU going to do. When I need to make an important decision, I try to take the anxiety out of it. It might help you to make a list of the types of treatments available and list the good and bad about each type of treatment. That is what I did when I wanted to get married. I made a list of what I wanted...non smoker, athletic, educated, etc. It was always easy to meet good looking women, but when I went over my check list, some just did not measure up. I think that is why most marriages end up in divorce...just bad early decisions.

This is your decision time. Ask questions. When your MRI was over, you should have asked about what the crowd of people was about. You were probably correct about it being students, but you will never know if you don't ask questions. I had the same questions two years ago that you have today. I was almost totally deaf in my AN ear, and my doc said translab would save my face...forget about the ear. Another doc said Novalis was the way to go. I knew I was going to lose my AN ear regardless of what decision I made. I asked lots of questions HERE. No one told me what to do, but it helped me fill out my list of the good/bad items. I had translab, because it fit my set of circumstances and I would do the same again. It might not fit your circumstances. Start that list today and ask lots of questions.

James

[rupert]

[quote  I did not feel as if Dr. Gardner was as compassionate at this appointment, which threw me for another loop.  My guess is that he might have been having a bad day. 
[/quote]

   Probably doesn't have any hobbies either.    I think it is just the way a lot of brain surgeons are.  Very matter of fact.  I'm sure some actually have personalities, but think about it.  What kind of person does it take to be a brain surgeon?  Someone very smart and very focused. They have skills, not necessarily communication skills.    Did you ever have a person in high school they called "the brain"   They were usually standoffish and somewhat different. I think the word I'm looking for is eccentric.
   If you had your MRI at UPMC,  that is a teaching hospital and your right,  probably students.  I had students during my GK treatment,  but they were all introduced and I was told they were there strictly for observation purposes. I actually thought it was kind of neat having them there.

[PaulW]

For what it is worth, my hearing wasn't great before I had Cyberknife. I could not use the mobile phone at all in my AN ear, it was just a distorted, but quiet, annoying noise.
I had also lost the ability to locate where sound was coming from.
So ringing your mobile to find it, was pretty useless, as I could not work out where the sound was coming from any more.

My AN was 10mm x 5mm x 5mm

Since CK My hearing has slowly come back, and continues to improve 18 months after CK
I can use the phone again in my AN ear.
High frequencies are coming back
Speech Descrimination 100% again
PTA at last test was -25db which is within Normal range again, but down a bit compared with my good ear.

Getting your hearing back is not usual, but it does happen.

I am very greatful that I have normal hearing again in my AN ear.
Hopefully I will keep it!

If keeping your hearing is important, it could be worth looking into Cyberknife.

Hearing loss maybe from pressure on the nerve or blood vessels to the cochlear rather than permanant nerve damage.

[lrobie]

Rupert/Bryan,

I was reading some of your old posts.  I see that you were initially going to have surgery with Drs. Hirsch and Gardner and later chose GK.  What did you think of both doctors?  Since you don't have a signature below your posts with updated information, I'm wondering how your hearing is now and if you experienced other complications, etc. after GK.  Also, I'm in Erie, PA.  I'm assuming maybe you're in the Westfield, NY area??

Lisa

[rupert]

Lisa,   No I'm not from Westfield but your getting warmer.
 
    My hearing was poor before my GK procedure.  I could still hear some tones in the lower ranges,  but word recognition
was only about 30%.   It has been two years now and it is the same.   Hearing preservation would not have been a factor in my decisions for treatment options.
   I met with both Gardner and Hirsch.  I think both are fine and experienced surgeons.  Dr,  Hirsch   has been around a long time.  They would be using retrosig procedure as was explained to me they both had a level of comfort with that procedure
for success.   My tumor was a bit to big , and hearing preservation was not in the picture, so middle fossa was out of the equation.
   Once I got Dr Kondziolka involved for GK,  it was a tough decision of which procedure to go with.  Ultimately chose GK and have had no regrets.  No complications or issues.   My AN was about 2.2cm x 1.6cm at treatment.   I skipped the 6 month MRI.
At one year it was a tad smaller and showing signs of dying.  At two years,  it is just a tad smaller again.

[lrobie]

Jamestown??

Thank you for the response.  It sounds like your treatment and recovery has been very successful. 

Lisa

[rupert]

Yes, so far so good and I feel very fortunate at this point.

  Jamestown,  now your getting colder

[lrobie]

Ripley?

[rupert]

PM me and I will let you know.  Otherwise the Paparazzi will find me.