Author Topic: NF2 AND SURGERY?  (Read 4711 times)

mke

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NF2 AND SURGERY?
« on: August 02, 2012, 02:15:57 am »
HI Everybody!

I'm new here. first of all..sorry for my English!!  :)
I've a bilateral AN, two small hypoglossal neuromas and two meningiomas...nothing is missing!!
I'm making the DNA test for NF2 but it's negative. However now I've some problems with my right side, for ear and facial nerves. I'm thinking about the surgery option but i don't know exactly what i have to do. I've 2 "chosen surgeons", one (in Europe) tells me to wait because they don't know if my right AN born from vestibular nerve or for example facial nerve and she doesn't want to create me any other problem before is necessary. The other doctor (in Us) suggests me to make a surgery to stop the situation before is too late for ear or facial nerve. At least i can try.
What can i do? Consider that the right AN is about 2,9 cm. I have an acoustic decrease, some facial spasm and a light numbness of the skin. At the moment i haven't any facial paralysis but i can see a difference between left and right side of my face.

Thank you for you help.
Mirko
 

Jim Scott

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Re: NF2 AND SURGERY?
« Reply #1 on: August 02, 2012, 07:47:23 am »
Mirko ~

Hello - and welcome to the ANA discussion forums.  We're not doctors and cannot offer 'medical' advice but with a 2.9 cm tumor and symptoms manifesting, I would strongly suggest obtaining another doctor's opinion.  An MRI scan should help any knowledgeable physician to determine the location of the tumor and plan the surgery, accordingly.  Time is not on your side in this situation.  Although you don't want to make a decision in haste, you should not procrastinate.   

Not to worry, your English is excellent.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Cheryl R

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Re: NF2 AND SURGERY?
« Reply #2 on: August 02, 2012, 08:32:53 am »
Mirko, You have NF2 whether a test says so or not.       What country are you in?       I know the UK has some NF2 centers.       I would say yes to some surgery and to the most experienced dr with NF2 you can find.        In the US ,House ear Institute in Los Angeles would be my choice.         There are some other answers for the US as there is some NF2 centers in the east.       I have NF2 but only have had 2 ANs and 1 facial neuroma with good luck with my midwest surgeon.   So know about House but have not researched the other NF2 centers here.                  Have you had MRI of the spine also to check for tumors there?         Also how old are you?        Your age can play a part in it too.           Choices on which tumor to help can be different with a NF2 patient as to try and save some hearing.      The 2.9 tumor is past that stage.    Plus treating the facial nerve tumor can change things too.
I would do the most research you can to find the best surgeon.              Wish I could be of more help and hope for the best for 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

CHD63

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Re: NF2 AND SURGERY?
« Reply #3 on: August 02, 2012, 09:06:17 am »
Hi Mirko .....

Cheryl has given you excellent advice .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: NF2 AND SURGERY?
« Reply #4 on: August 02, 2012, 09:52:15 am »
Hi and welcome, Mirko.

I'm not NF2, but Cheryl is and has some great suggestions for you. 

I also like Jim's suggestion of getting a second opinion. 

Please keep us posted on your situation,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

BlueSky

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Re: NF2 AND SURGERY?
« Reply #5 on: August 02, 2012, 01:35:01 pm »
Hi Mirko,
If you are a member of the Acoustic Neuroma Association you can go to the members section and during the 2011 symposium there was a workshop presentation given by Dr. Brackmann called Hearing Preservation & Rehabilitation in Neurofibromatosis Type 2. It has some information that may be helpful to you.