My update..

[wind6]

Hi everyone, sorry it took me a bit to build up my courage and thoughts to be able to update you all. I had my surgery on Aug.2nd. It was kind of tough but I think I am actually doing quite well considering what my body has been through. I am home and taking care of myself again with minimal help from others.
I had a surprise during my surgery. The tumor was growing on the facial nerve...not the acoustic nerve afterall. Needless to say I do have facial paralysis.That was my biggest fear so I am not sure how I will end up dealing with this, trying really hard to stay positive tho. After watching others around me in the ICU I became really grateful for my own condition. Really eye opening to see what others are going through and to see that some dont make it at all.
My doctors monitored my facial nerve throughout surgery and I had movement until about 4 hours post-op. It was strange because I could feel my face beginning to droop and at the same time my hearing was fading. Docs reassure me that my hearing loss will be temporary because my acoustic nerve was not involved except from the effects of swelling.
I have surgery again tomorrow morning to place the gold bar in my eyelid. It is currently sewn shut to protect it until surgery could be done. I will be so happy to be able to rub my eye again!!
Well enough rambling...has anyone heard from the others that were having surgery on the 2nd??? Hope all is well with everyone. Maybe I will write more about my story later..I'm a little too tired to tackle that project for now.
My thoughts and prayers to you all.         Sherry

[gemaste]

Hey this is Glenn and I am one of the three would had surgery on the 2nd.  I lost my hearing on the right side and I am having a lot of ringing in my deaf ear.  I had a infection on my cut but some meds. are clearing it up.   Otherwise I am doing very good.  I am so sorry to read about your face.  I hope and pray that you will get it back.  It really helped me to know that there was 3 people all having surgery that day.  Please keep me updated.  I go back to the Dr. on Thurs.  Then I go back on the 12,13 to my other 2 doctors.  I hope you are getting around well.  Thanks again for your update  Glenn

[ppearl214]

Sherry and Glenn.....speedy recoveries to you both!!!!!!!!

Phyl

[russ]

Hi Sherry!
  Don't give up on that facial nerve. It is anatomically intact as per your statements of monitoring and post op function.
  It is probably traumatized and has swelling around it. Some report regaining facial function yet after two years.
  Russ

[matti]

Hi Sherry - I have been thinking about you. My surgeons were caught with a surprise during my surgery, as my tumor had completely wrapped itself around my facial nerve and splayed it. I did have paralysis, but my nerve functions through testing were intact. My surgeons said it was all due to the trauma and swelling. It really bummed me out, because I was prepared for the loss of my hearing, but not my facial function as well. I started to feel slight movements 2 1/2 to 3 months after surgery. I am 7 years post op and back to about 85% and I am very happy with that.

I know what you mean about being in ICU, as sick as I felt, I also felt so very blessed. I think being in there put it all into perspective for me. Take care and stay positive. Please keep in touch.

matti

[wind6]

  Hi everyone, New news...I saw my surgeons this week and am still on cloud nine!!! I have slight facial movement in all areas now I am so incredibly happy and thankful. The surgeon that put in my gold bar told me I should be the poster-child for how this wieght is supposed to function. I do still have some dryness to deal with but hey......I am not gonna complain about that.
There is also a good likelyhood that my hearing is beginning to come back. I am having testing on October 5th to make sure.
I just cant tell you all how relieved I am. Some things really are still hard at times but at four and a half weeks I think my progress is great.
Glenn..How are you doing? I am so happy that you came here and posted too. Now we need to find Cookiesecond. You two are in my thoughts allllllllllllll the time. I hope everything is well for you. Hold on to your fighting spirit and soon all of this will pass too. Then we can inspire others as they have inspired me.
Thank you Russ, Matti, and ppearl.

[gemaste]

You have very good news.  I am very pleased to hear about your face.  That is very good news.  I am also glad to hear your hearing is coming back.  It sounds like you have it going on now. 
I am doing well.  I still have no hearing in my right ear and having a lot of ringing is that ear, other than that I am doing excellent.  Thanks for asking.  Glenn

[cookiesecond]

Hi wind6 and gemaste,
I am so glad to hear that you are recovering well. You have definitely been in my thoughts and prayers as I felt we were all in this boat together.My surgery was a success as they removed all of the tumor and I did good.
After being home almost a week I was diagnosed with spinal meningitis and that was a tough battle but I.m on the mend.I appreciate the thoughts and prayers. I know God has really been with me ALL the way.I am still recovering but I know I am on the uphill side.
Keep in touch,
Lynn(cookiesecond)

[luv2teachsped]

Hi cookiesecond- Glad to hear you're doing well.  Keep your positive attitude!  Wind6:  Did your Dr.'s say that some of the paralyis could go away?  I know many others here have had paralysis and over time it has improved. I'll keep you both in my thoughts and prayers.  luv2teach

[wind6]

Hiya Lynn........so good to hear from you. I felt the same about us three being in the same boat together. Glenn seems to be making good progress too. YEAH FOR US ALL!!!!

Luv2, my doctors seem very, very happy and quite surprised. They told me that my facial nerve was really devasted. However, during surgery the monitors was showing movement around my mouth. Now I am having movement around my eyes, mouth, and forehead. Since my last visit with my docs I have started having nerve twitches in the areas around my mouth and eye. I am not sure how much I will regain or if this is all I will get but I am soooooooo hopeful right now.

I was kind of wondering about my headaches lately though. This is recently started and usually wakes me in the mornings. Its very painful. Also having pain and stiffness in my neck Does anyone have any ideas if this is normal at 6 weeks post-op? Oh...I had retrosigmoid so I know that can make me more prone to these symptoms. Does anyone know good exercises and how long post-op were you told to start exercising? Thanks all.    Sherry

[gemaste]

Sherry, you seem to be making progress, I am glad you are doing better.  Keep your faith....  I am going back to St. Louis Barnes Hsspital today and tomorrow.  I am going to meet with both doctors and see how I am doing.  Hope they can stop or calm down this ringing before they release me to go back to work.  My balance is back at 80-85% and I am starting to get used to being deaf in one ear.  I suppose this will take more time or I will just get use to it. 
Tuesday will be 6 weeks and I am about back to normal.  Thanks for all the notes Glenn

[cookiesecond]

wind6,
I am also experiencing neck pain.I use a wrap that you heat in the microwave and it really feels good.I am also having headaches daily. I don't know if it is from the surgery or the meninitis. Where does your head hurt?
Overall, I think WE are on the mend. I know better days are on the way.
Take care and God bless,
Lynn

[wind6]

wind6,
I am also experiencing neck pain.I use a wrap that you heat in the microwave and it really feels good.I am also having headaches daily. I don't know if it is from the surgery or the meninitis. Where does your head hurt?
Overall, I think WE are on the mend. I know better days are on the way.
Take care and God bless,
Lynn

Lynn, My headaches are usually at their worst early in the mornings(wakes me up everyday) and all of the pain is in the operated side. It is a throbbing, stabbing pain that travels from my neck up to behind my eye.
Thanks for the tip on the heat pack...I will try that today.

I am so happy to be talking to you and Glenn. Amazing how two people I have never met can feel so close. I hope you get some good answers at Barnes Glenn. Be sure and keep us posted.  Sherry

[gemaste]

Hey Sherry I noticed you are in Springfield,Il  Our oldest son was born at St. Johns.  My wife is from Jacksonville.  I got released from one doc. today and I will see the other tomorrow.  Good keeping in touch.  Glenn

[luv2teachsped]

Hi Wind6:  I am 4 months post surgery and I still get headaches, however i"catch" them early, and they are nowhere near the migraines I had up to 2 &1/2 months after my surgery.  I still get the pains in my neck and up by my incision, but I think some of its just the nerves "healing", as I had a lot of facial numbness before surgery, plus I've notice when I'm tired and/ or  stressed, its worse.  I use heat wraps too, plus I do the exercises they gave me at the hospital, it all seems to help.  It sounds like you're on your way to recovery girl.  Don't get too impatient, I frequently over did things those first few months because I was feeling good. and I paid the price with those "whomper" of headaches! Take Care, luv2teach