Chat with "kj"

[kjneuma]

Hello, I have written before but really need honest feedback to my situation...please.  I am told my tumor is relatively small at this time, but that it is growing.  I have already had the first tumor removed (surgery) and I have also already had Gamma Knife on the tumor I have now. 

My concern:  quality of life after the next surgery...with my next surgery, which by the way I am told is my only option at this point, they will have to remove my entire facial nerve.  UG! Has anyone had surgery twice? I need to hear from you soon on how the second time around goes compared to the first. 

I am also told they would like to remove it sometime this year, as it seems to be slow growing at this point.  When ever is there a good time to decide when to schedule something like this?  With my first surgery the tumor was so large they removed it almost as soon as they discovered it.  Anyway, I won't ramble on your time is valuable too....help

kj

[Raydean]

KJ

I know how difficult it is to think about a second go round of surgery.  I had surgery for residual tumor. My tumor was also large like yours.  My care was switched to a different, more experienced medical team, I was also in a larger hospital. I had a much faster, easier recovery the second time around. I was ready to come home the second day following  surgery but because I live in the 'boondocks" away from quality medical care the doctor kepted me the third day.  It was so much better then the first time.  I can't explain the difference, but my experience was good.
Best to you
Chet

[Captain Deb]

KJ,
I suggest you gather copies of all your surgical reports and medical records and MRI's if possible and get in touch with House Ear Clinic in LA for a free consult.  What is the current size of your AN? Who did and where were your previous treatments? In what part of the country do you live? There are so many different factors to consider when figuring out what the best course of action is.

Capt Deb

[kjneuma]

Thanks Raydean.,I hope my second go around is better too:-) 

Captain Deb-I have recently ordered copies of my medical records and MRI's.  Thank you for the suggestion of that clinic in LA.  I don't know the exact size of my an, but from what I have been told it is pretty small right now approximately 1.5cm. My original surgery was performed in North Dakota.  The gamma knife was performed at the Mayo Clinic in Rochester Minnesota.   Any other suggestions you have would be very beneficial. 

Thanks! kj

[Cheryl R]

Hi kj.      I had mid fossa surgery in 2001 and 2 yrs later was found to have a tumor in the other ear which we are watching but makes me be NF2.     I had a new tumor develop on the facial nerve on the same side I already had surgery on and had translab surgery March 23rd of this year.   The facial nerve was severed but my surgeon during the surgery took a nerve from my neck and did a graft of the facial nerve which should give me some function in 8 mos or more,I am told.      The earlobe and ear are numb but some feeling may come back there also I am told as other nerves can take over the area.    I did very well after this surgery as never had to get over the balance issue as had done that the first time.                 I did have a setback as had a CSF leak which had to have a second surgery 2 weeks later which my doctors think was probably due to a new colloidal implant they had switched to did not take hold and cause scarring for the tissues to hold onto.     They had 2 other leaks so will go back to the previous material they used.   This was done at the Univ of Iowa where they do AN's on a weekly basis.        The thought of more surgery is scary but it wasn't any worse than the first even with the nerve graft.        I am in central Iowa and had a choice of Mayos or Iowa City.                  I have an AN friend in Oregon who had a regowth and her doctor mentioned Iowa City as a possible place to go for her second surgery but she went to House in LA.           Good luck in your choice.                      Cheryl R.

[kjneuma]

Thanks for your information Cheryl...I am curious about the nerve grafting.  I am told they can do that in my case as well, but does it connect to the tounge? If so what is that like? My facial nerve was severed during the first surgery, but to make sure they get ALL of the tumor this time they will be removing the nerve.? I will lose function on the left side of my face and am curious if you have any input regarding that...thanks  kj

[Cheryl R]

Kj,      Guess I hadn't caught you already had a severed nerve so that might be a whole different
situitation and one they may not know till they get in there,what can be done.        I had part of my nerve removed too but the new nerve piece was sewn in right away at the same time and hopefully the body will think in time it is still a facial nerve and send the impulses over it.    I can only hope!     
The other thing you are thinking of is different but can't think of the name of it right now. 
 On a different note the talk of Shel Silverstein brings memories  too of my kids younger days as we had one of his books too and I can still recite parts of some of the poems.    I can not remember which one and it is driving me nuts now trying to remember!
                                                Cheryl R.