Having to have surgery again.

[Cheryl R]

    I got the distressing news this past week of having to have a second surgery.  My first was mid fossa 11-01-01 and did well post op with a 3 1/2 mo recovery from facial paralysis.     I was found to be NF2 in May 2003 when a small AN was found on the other side with only slight growth so far.   My MRI a year ago showed possible growth on the surgical side but my doctor coudln't say for sure with comparing trhe MRI's.     I do my MRI's at the hospital where I work and take with me to Iowa City where I go to the Univ of Iowa.    The radiologist report had said growth but it wasn't till I saw the MRI that saw how much.     My doctor was quite surprised as I don't seem to be the typical older adult onset pattern of NF2.        He does not believe in radiation for NF2 tumors.         I also have been having facial symptoms for the last 3-4 weeks.    He is not sure if this is a regrowth or a whole new tumor since am NF2 and won't know till get in there. If it is on the facial nerve then likely will sever the facial nerve and do a nerve graft at the same time and the gold weight in the eye.     I hope this does not have to happen.            The surgery is March 23rd.         I am over  the initial shock but wish this was not having to happen,    Once was quite enough.
                                     Cheryl R.

[becknell]

Hi, Cheryl. I am sorry you are facing this again. Don't know if you remember me, but you helped reassure me before my huband's surgery.  I know how hard it must be, having gone through it once. We're kind of in the same boat, but not looking at surgery. Looking at radiation for my husband, who had his large tumor partially resected and dr. now wants us to get radiation for the small remainder. I don't blame the doctors, as I think we had great docs & they did all they could, but sometimes I still feel like I'm living a bad dream. I'll send you a PM later. Jennifer

[HeadCase2]

Cheryl,
  Sorry to hear about the tumor regrowth.  I agree, once is certainly more than enough!  Sending good thoughts your way.
Regards,
 Rob

[Kathleen_Mc]

Cheryl: Is the surgery in March to be done on the regrowth? I had surgery in Sept. to remove my regrowth (so they suspect, highly unlikely I grew a new tumor on the same side) and I must say the recovery was much easier than the first time around (likely due to a smaller tumor= shorter surgery and also I had already lost the hearing/balance and facial nerves the first time around so I didn't have as much to adjust to post-op). The only thing I had to get through was some vertigo that was unexpected (likely due to swelling) and the pain of the surgery itself (leg from fat graft hurt more than the head). Needless to say brain surgery the second time around wasn't as bad as the first, at least not for me. Kathleen

[Larry]

Cheryl,

Seems to happen a fair bit with Middle Fossa. I have regrowth and am contemplatmg options. Maybe why my surgeon has now elected to not do any MF again.

Larry

[Cheryl R]

   Larry,  it was thought that the tumor was entirely removed the first time.    I was told at that time that he had only had one mid fossa regrowth on a pt in many years of doing AN's.       We are thinking this is caused by the NF2 as those tumors can be more aggressive.     Won't be able to tell till get in if is regrowth or a whole new tumor due to the NF2.               Cheryl R.

[Cheryl R]

I am hoping this time goes as well as I did very well the first time.    No dizziness,little pain, was up and walked easily right away.    I never realized had the spacy balance issue till walked outside.
 I am just scared over the possibility of losing the facial nerve.        I had facial paralyis for 3 1/2 months last time.              Is the nerve graft part painful?             
                               Cheryl R.

[vjharris]

Hi Cheryl,
I just read of your news regarding your impending second surgery. You will be in my thoughts and prayers. I have heard that a second surgery is sometimes easier than the first and I certainly hope that is the case for you.
vjh

[ppearl214]

Cheryl

Sending you hugs and good wishes as you work through this...

Phyl

[Kathleen_Mc]

Cheryl: Are you asking if the nerve graft involving removal of nerve from your leg to fix your face is painful or the one where they attach your remaining 7th nerve to your 12th? I have had both done and I understand in some they do the 7-12 before they close when they remove the tumor. When I had nerve taken from my leg and put in my face it was painful but heck "it ain't brain surgery". I think all things are relative and since the very first surgery I ever had in my life was brain surgery the others weren't all that bad. The one to join the 7th and 12th nerves wasn't a problem. In fact all the "plastic" surgeries I have had to fix my face since the loss from the AN haven't been all that bad (looking back on it now) and I always recover fairly quickly. Kathleen

[DeniseSmith]

Sorry to hear about your upcoming second surgery.

My nerve graft came from my stomach.  The first one they did was taken from an area around my waist line. It was sore when I tried to wear pants. My second one came from a little lower and did not bother me. I had two grafts since they had to go in a second time and repair a CSF leak.

[Cheryl R]

I wasn't exactly sure what I meant when asked how painful nerve graft is.   I have since found some info.    He said he would take it from the neck and I did find some info on this.      I go back in a couple weeks for my pre op work up so will ask more questions then.
                                  Cheryl R.

[Static]

Cheryl, Hang in there, you'll be in our thoughts and prayers.

[thecakes]

   Cheryl, be strong, my thoughts and prayers are with you.  Patti

[Cheryl R]

Hey Guys.  I am back from round 2  and going strong.      Surgery was Thurs and home Sun.   I did end up with the nerve graft and hopefully willl start to show some results in 8 mos or so.   Surgery was trans lab this time and had a approx 2 cm tumor on the facial nerve which has mostly grew over the past year.     I was not real sleepy this time like last and no new balance issues to contend with so up and around faster.     Am getting stronger every day.      Alittle more pain than last time but I got to take off the dressing today which will help and have took a few pain pills.    The old appetite is slowly coming back.                  I feel very lucky and hope the nerve graft does give some return to my face.     Post op this time it seems to look better than it did last time.    May have to get a gold weight once the swelling improves but eye isn't doing too bad and can close it most of the way.               Time will tell how it all goes and will keep my fingers crossed for the small tumor on the good side which makes me NF2.                   
I appreciate everyones pre surgery good wishes!                         Cheryl R.