Author Topic: *New to the site...Need your help...  (Read 5818 times)

kjneuma

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*New to the site...Need your help...
« on: April 30, 2006, 08:44:19 pm »
I am a 31 year old woman who had a very large left-side acoustic neuroma removed in 1998.  In 2001 a follow up MRI detected a small acoustic neuroma in the same location.  I received Gamma Knife radiation right away on that tumor.  This past weekend a follow up MRI had identified that the tumor is growing and my doctor at the Mayo Clinic in Rochester Minnesota would like to take it out again sometime this year.

After the surgery in 1998 I didn't have any hearing and experience moderate facial paralysis which I have become used to, but this second surgery would involve the complete removal of my facial nerve on the left side.  Not sure how I feel about that.  I guess they will have to do what ever they need to in order to get all of the tumor removed this time.  I am just scared of how I will live with out hearing, facial function, and possibly lose my vision in the left eye?  Is there anyone that has gone through anything similar that can give my any input? Thanks


Battyp

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Re: *New to the site...Need your help...
« Reply #1 on: April 30, 2006, 09:31:58 pm »
You lost me...did you lose your hearing the first time?
Why do they have to completely remove your facial nerve this go round? 
Are you symptomatic?  Is it on the facial nerve?
Did they get all your tumor the first time?  Why the regrowth? How big is it now?

I can understand your concerns and fears.  I haven't had to go through that.  I'm 8 mos post op and still coming to terms with my residual problems that were not expected from my retro. back in august.

Please keep us posted how you are doing!  Know we're here for you. 

Michelle


Crazycat

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Re: *New to the site...Need your help...
« Reply #2 on: April 30, 2006, 11:10:07 pm »
kjneuma,

             My heart goes out to you. I'm so sorry that you've to deal with this.
I know this is easier said than done: get away from those hayseed doctors and try to get a second opinion at a hospital such as the House
Institute in L.A. or Mass General in Boston. Don't just settle for what they're telling you until you've solicited the opinions of the best people out there.

          Stay in touch......Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Joef

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Re: *New to the site...Need your help...
« Reply #3 on: May 01, 2006, 04:15:42 am »
Yes, get a second opion at House  http://www.houseearclinic.com/acousticneuroma.htm
« Last Edit: May 01, 2006, 04:27:00 am by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Cheryl R

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Re: *New to the site...Need your help...
« Reply #4 on: May 01, 2006, 08:11:39 am »
I had to have a second surgery in march due to a new tumor which had grown on my facial nerve. They severed the nerve and then did a nerve graft from a nerve in the neck and expect to have some function return in several months.      I had mid fossa surgery for my first tumor in 2001 and this was a new tumor and not  a regrowth due to having NF2.     The 2nd surgery was easier as never had to go thru the balance issues.             I had had facial paralysis with my first surgery for 3 1/2 mos but for some reason my face doesn't look as bad this time even though nerve was severed.               You might ask if you would be a candidate for this also and give you some hope for the future.         It would depend on what damage the facial nerve has but the nerve graft was done as part of surgery.     
I am from Iowa and go to the Univ of Iowa for treatment as they do many AN's.       
        Good luck to you.     This all gets so scary.     I am 53 so not as young as you.
                                                  Cheryl R.
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Crazycat

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Re: *New to the site...Need your help...
« Reply #5 on: May 01, 2006, 09:19:04 am »
Sorry for being so cynical about that hayseed comment! It was a reaction borne out of fear and anger on my part.
Seems that theses tumors, being cranial nerve shwanomas, can grow off of, or destroy any of those nerves back there, not just the auditory nerve.

  Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

DeniseSmith

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Re: *New to the site...Need your help...
« Reply #6 on: May 01, 2006, 10:49:45 am »
KJ,

I went to the Univ of MN for my surgery.  I have left sided facial paralysis of which the jury is still out on whether it will come back or not.  I am approaching my one year mark next week.

The drs. at the U of M had to cut my nerve to get the entire tumor out.   I am finding this to be one outcome of my surgery that is difficult for me to deal with.  I am actually angry about my outcome, but have started seeing a counselor, who I am hoping will help me come to terms and cope with the "new me".

If you want to email me away from this site, I would be more than happy to listen or tell you more about my "story".   

Denise

Kathleen_Mc

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Re: *New to the site...Need your help...
« Reply #7 on: May 01, 2006, 12:14:21 pm »
kjneuma: I lost my hearing, balance and facial nerves the first time around and although it is no picnic to recover from I can say that I was relieved at the time to know "they got it all" and over time I came to terms with "the new me". I did have many "plastic repairs" done to my face, I tried the bi-cross hearing aid, my balance improved greatly over time and I hardly notice the vertigo during the average day.
What I am trying to say is that although these seems like terrible things to overcome....you will. I have found coping with this issues less troublesome than then worry of residual tumor growing to the size that it will cause more harm......as it happens my tumor regrew and I just have the regrowth removed last fall.
You will survive
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Obita

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Re: *New to the site...Need your help...
« Reply #8 on: May 01, 2006, 03:48:22 pm »
kjneuma:  I am a new visitor also and saw your message first thing.  I had my 2 year MRI today (left side acoustic neuroma surgery 05/04) so I decided to visit this site to see how often these neuromas come back.  If you are in MN like I am I would suggest going to Dr. Sam Levine and Dr. Stephen Haines at the University of Minnesota for a second opinion.  At the time I had my surgery Dr. Levine had done over 500 Acoustic Neuroma surgeries.  My tumor was large also so I elected to have it removed Translab so I too am deaf in the left ear.  My facial nerve was barely affected and returned to normal after a month.  I am very grateful for my Doctors at the U of M. 

Best of luck,  Kathy O'Brien
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

kjneuma

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Re: *New to the site...Need your help...
« Reply #9 on: May 01, 2006, 08:00:36 pm »
You lost me...did you lose your hearing the first time?   
Why do they have to completely remove your facial nerve this go round? 
Are you symptomatic?  Is it on the facial nerve?
Did they get all your tumor the first time?  Why the regrowth? How big is it now?

I can understand your concerns and fears.  I haven't had to go through that.  I'm 8 mos post op and still coming to terms with my residual problems that were not expected from my retro. back in august.

Please keep us posted how you are doing!  Know we're here for you. 

Michelle

Yes, I lost my hearing as a result of my first surgery in 1998.  Yes they have to remove my facial nerve this time.  I am not symptomatic, but it is sitting on the facial nerve.  I thought they had gotten the first tumor out the first time, but a recheck showed recurrance of the tumor.  It is about 2-3cm right now.  Thanks for the feedback-kj



Battyp

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Re: *New to the site...Need your help...
« Reply #10 on: May 02, 2006, 08:12:27 am »
Yikes!  It's grown quite large so make sense now why they'd want to take it out.

I'm so sorry you have to go through that! 
Have you asked about them reattaching your facial nerve? 
I know I was told that if something happened to mine during surgry they had to reattach it during the surgery to have facial function come back.

Wish there was more I could say or do...

Know I'm sending you warm hugs and lots of prayers your way!