Author Topic: Tumours on Spine (NF2)  (Read 7022 times)

nicolej

  • New Member
  • *
  • Posts: 3
Tumours on Spine (NF2)
« on: May 23, 2011, 11:25:45 am »
Hi, as some of you may know I was talking a while ago about NF2. I am the 18 year old from Scotland. Well on the 20th May I got told by my conultants I have 3 very smal neruoma's on the nerves at the base of my spine. They are easily treatable if they ever grow. I have been confirmed with NF2 however it is a different case which the consultants have not seen before, as nothing has been passed on from my parents. Is anyone else in the same situation where it has not been passed on from their parents. (I had an AN on my left and right side of the brain. Right side has been removed)
4.2cm AN removed April 2009 (right side) Small tumour wait and watch on Left side.

Cheryl R

  • Hero Member
  • *****
  • Posts: 1824
Re: Tumours on Spine (NF2)
« Reply #1 on: May 23, 2011, 12:40:14 pm »
Nicole, I am sorry to hear that you are confirmed to be NF2.     I also probably have the genetic mutation version.  I say probably as my parents died when I was 20 and 21 and I do not think they did but can't say 100%.  I had very old parents so think they did not have it.  No other family did.        I have had 2ANs and 1 facial neuroma and hope that is it.     I have been checked for spinal tumors twice with none so far.       There is a greater percentage now being found to have the mutation.          It has been well explained on here about why by a couple ANers who have looked into well.    I had my first AN surgery at age 49 and the tumor on the other side not even found until a couple years later.     AN and facial one on the rt and AN on the left.   There are others here with the same situitation and some with the family gene.              I hope you have drs well informed on NF2 and think there would some others in Scotland.         There should be some others who can add to this here and help answer any questions you have.
                                                   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

Mark241

  • Full Member
  • ***
  • Posts: 131
Re: Tumours on Spine (NF2)
« Reply #2 on: May 24, 2011, 10:19:11 pm »
Hi Nicole, I'm also NF2. Had a right an and also have one the size of a pea on the left side, and two small spinal hitch hikers. Neither of my parants have been diagnosed as nf2, however I do believe my Dad may be. He Say's he's to old to deal with it, but my sister isn't nf2. So who knows', if it mutated with me. Kinda had to laugh, sounds like we have the same amount of these guys in the same places. Best of luck to you!
4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w

nftwoed

  • Guest
Re: Tumours on Spine (NF2)
« Reply #3 on: May 30, 2011, 03:26:19 pm »
Hi Nicole;

  I'm 61 with 10 small either ependyomas or schwannomas at the base of the spine ( cauda equina ). They are 1 - 2 mm. in diameter and have done nothing in the 10 years Dr's have known about them. They look like BBs on MRI. A spinal series MRI is performed annually as well as the head. Seldom will a facility do both MRI series at one time because of the duration of time and also the body must be repositioned between the two series.
  Of course, you are quite a bit younger when tumors tend to be more active, so, it is well to keep close eye on these as the potential for some pretty serious effects exist if they should grow.
  Like you, one AN has been removed Translab and the other remains. I'm deaf left and have about 15% hearing left right side.
  Re, "passed on from parents", as two mutations of the NF-2 gene are required to develop the full blown disease, in some, the second and spontaneous mutation often occurs at conception or very young age. In this situation, one of the parents has an NF-2 gene which has only mutated once. That will not give the disease, NF-2.
  Re, "passed on from parents", if a parent has full blown NF-2, the chances of having it as an embryo are high. This is an ethical issue ( for some ) following amniocentesis revealing the disease presence.
  Direct inheritance or spontaneous new mutation are about an equal 50/50 chance.

Raven

  • Full Member
  • ***
  • Posts: 129
Re: Tumours on Spine (NF2)
« Reply #4 on: June 01, 2011, 06:51:58 pm »
Hi Nicole,

I was diagnosed almost 4 years ago with bilateral ANs at age 48. I had the tumor on the left side removed since the damage was already done (lost hearing overnight). The right side is still very good, so W & W for now. My Dr. ordered an MRI of my spine which showed 5 small tumors, but I don't even think about them. I'm NF2 but there is no history of anybody in my family having NF2.

John
« Last Edit: June 01, 2011, 06:55:12 pm by Raven »
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

nftwoed

  • Guest
Re: Tumours on Spine (NF2)
« Reply #5 on: June 14, 2011, 03:34:03 pm »
Hi;

  Of those small spinal tumors, I believe only about 1/3rd ever cause problems.