Removing tumor for the 2nd time

[Kathyaquino]

I had surgery 6 years ago, but some of the tumor was left and is growing again.  I need to decide to have surgery or cyberknife to try & remove the tumor hopefully once and for all.  I already have facial paralysis, synkenesis, one eye that's lots smaller than the other & lost hearing & balance problems.  Even though most of the time I think nothing could be worse I know there's a chance that it could turn out worse.  I just don't know what to do because I'm so afraid of my face looking even worse than it already does.

I'd like to hear from people who have had cyberknife after having surgery to remove a residual tumor and those who have had a 2nd surgery.  I saw Mary Jo Buttafuoco on television today and what a bullet did to her face, surgery did to mine.  I wish there was something that could be done for facial paralysis, but I guess short of a miracle there is nothing that can be done.

Please let me know about your experiences.  I know only I can decide, but I'd like to hear what other people have done.  Thank you

[msuscottie]

Kathy, I am in the same boat. I am 30y/o and had partial removal of my AN last year (oct. 04) and a recent MRI has shown blood flow to the risidual tumor and all involved are confident that it will begin growing again. My original tumor was 3.5cm, now it's about 8-10mm but it's proximity to the brain stem has my Dr's on alert. My first sugery left me with facial paralysis, eye problems, balance issues, SSD & major loss of confidence. What is synkenesis?

My Dr's have recommended that I have surgery in the spring to remove the risidual tumor, but with our first baby due in May, I'm thinking about doing it even sooner. They seem to discard radiation because of the proximity to the brainstem, but I'm wondering if that is even an option for me. I too, want to avoid surgery (again) but I also want to be somewhat in tact and able to hold my baby. I know we're into throwing around good thoughts on this board, but let me satisfy myself with a quick dose of reality. THIS SUCKS!

[wind6]

My heart goes out to you both on this. You are living my worst fear. I don't know what I would do in this situation but I have to say...the thought of surgery "AGAIN" scares the begeebers out of me.
Scottie...I am so happy to hear you are going to be a daddy. What a wonderful blessing. I hope and pray that you will soon be past all of this and be able to find peace and joy in your life again.         Always, Sherry

[Kathyaquino]

I agree, it does suck.  Sometimes I get so disgusted that I write very melodramatic things on this website, but I'm not allowed to complain to family about how badly this whole thing has affected me.  I don't know what SSD is so maybe you could tell me.  I don't know if it's the same thing as synkenesis, but when I talk my eye blinks.  The nerves healed to the wrong muscles so I can be eating & winking at people at the same time.  I have this very unrealistic thought that if a better doctor does this second surgery he might be able to repair some of the damage the first doctor did.  I guess the truth is that I can only hope that I don't come out any worse than I am now.

I am so sorry that you have ended up with so many problems  You are so young and have a family to raise.  I am older & have granchildren.  One of my wishes is to have a picture with my grandchildren & have an actual smile on my face.  I guess that's really the absolute worst part of this is that I will never be able to smile again.  Because of the paralysis I look like I'm in severe pain when in actuality I'm trying to smile.

I wish you the very best for your second surgery - we can always hope for a miracle.  Please let me know how everything turns out.  Could you also let me know who your doctor is?  I'm going to the House Ear Institute next month.

Kathy

[msuscottie]

I'm actually in Michigan and my surgery was peformed at Providence Hospital in Southfield with Dr. Pieper (Director, Michigan Head & Spine Institute) and Dr. LaRouere (Michigan Ear Institute), both very highly regarded and my experience with them has been, dare I say, positive?

[Kathleen_Mc]

Kathy: I am currently  about 10 weeks post-op from having my tumor operated on for the second (and hopefully last) time. During the first surgery I lost my hearing, balance and facial nerves leaving me with the same problems you have. I had many repairative surgeries to my face and regained some of the tone, at rest a great improvement as well as some movement and also improvement to my eye.  8 years after the first surgery I found out that the tumor had regrown, I remained under observation for over six years, the growth remained very little but finally I had the tumor removed. I found it very upsetting to have a tumor growing inside me so the surgery was done at my request, it was not medically necessary. My only "ill effects" from the surgery is recovering from the surgery itself and that just takes time, then I will be back to where I was. I can fully understand you not wanting another surgery and it wasn't something I wanted but it was the lesser of the two evils in my case....my anxiety level greatly decreased as soon as I awakened in I.C.U. and knew I was through the surgery and things were going to get better now not worse.
Kathleen

[jenifyer]

Kathy,

I'm in the same boat too.   I was also watching Mary Jo Buttafuoco and felt the same. i got all teary eyed but then thought to myself, i am still here!

I had my first tumor removed june of 2000.  My second tumor was removed in May.  It was such a different experience...night and day.  i am in a new city and have a great new doctor who is MUCH more experienced.  My hospital stay was only 2 days compared to almost 7.  The whole thing was much less traumatic.  My surgeon was even able to remove a scar plane from my facial nerve and i got even more facial tone and function back than i had before. 

I was contemplating GK but in the long run decided surgery was the way to go.  it was definitely the right decision for me.  if i can be of any help please email me.

jennifer

[Karen]

MSUSCOTTIE, I also have facial paralysis, some balance problems, hearing loss and one eye is smaller than the other.  you are the first one I have seen with the eye problem..I have a gold weight in that eye, since I have no feeling the Doctor says  I should keep that eye not open as wide as the other one to protect it.  I also have to keep so much ointment in it that it is blurry all the time.  I have an appointment with Jacqueline Diels in Wisconsin this week for facial retraining and I hope she can help me.  Did you have the 12/7 done?  Do you have feeling in your face?  My surgery was 2 years ago in Dec,  Let me know about yoyr eye problems.  Karen

[jenifyer]

Msuscottie-

I just wanted to let you know that when my baby was about 6 weeks old i found out my tumor had grown back. it was about 3 cm this time and the thought of surgery was devastating, especially with a new baby.  I was able to breastfeed him for about 4 months and had a lot of stored milk for after the surgery.  I had my mom move in with us for a while to help, but the bottom line is, we got through it. The whole experience was much better than my first one.  And, i have all the issues that everyone else does too...dry eye, facial paralysis, deaf ear, and when i smile i look like i have a small eye etc. 

When i look at my 2 kid though, everything seems to be ok because in the long run, i am still here and can have my kids and see them grow up.  I know it is a terrible thing to have to endure, especially a second time, but try to remain positive.

jennifer