Author Topic: ADVICE PLEASE  (Read 13167 times)

Kaybo

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Re: ADVICE PLEASE
« Reply #15 on: January 05, 2011, 06:41:56 am »
Chelsea and Chelseasmom - Phyl would know best...

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Cheryl R

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Re: ADVICE PLEASE
« Reply #16 on: January 05, 2011, 07:34:40 am »
Unless Chelsea was also there at the symposium, there was also Taylor and mom Kathy.        She is not NF2 but has had regrowth treated with radiation.          They have been at the last 2 symposiums.     They are in Illinois so bet will come this year as not super far for them to come.        She has been thru alot too and hope this is it now.                                   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

Kaybo

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Re: ADVICE PLEASE
« Reply #17 on: January 05, 2011, 08:05:26 am »
Taylor, of course...my bad - just used to seeing "chelseasmom"!!

K
*oops!*
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Cheryl R

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Re: ADVICE PLEASE
« Reply #18 on: January 05, 2011, 06:01:00 pm »
The forum profile is Taylor and also one is Taylorsmom.       Their home email is listed on the moms profile.      I should have wrote it down to send you but you can find it easily.              A pic of them also on it.
                                              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

nftwoed

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Re: ADVICE PLEASE
« Reply #19 on: March 24, 2011, 06:51:05 pm »
Hello;

  I believe you have NF-2 as have the hallmark, diagnosing sx, bilateral ANs. Spinal tumors occur in about 1/2 to 2/3 but are usually ( not always ) asymptomatic . I believe 30% are symptomatic.
  Re, an NF-2 gene, every person has one on Cromosome 12.2. The reason the gene exists is to produce tumor inhibitor protein 'merlin' ( same as schannomin ). To gain NF-2 one must have two or more mutations of the gene, or, a complete deletion of the gene.
  If one has NF-2, the disease, they are born with at least 1 mutated copy of the gene from a parent. However, one mutation isn't enough to give NF-2, so, a spontaneous mutation must occur if the full blown disease isn't inherited directly.
  The %s are of those who have NF-2 is that 50% inherit the disease directly, and 50% have another mutation, or deletion of the gene ( less common ).
  Current blood tests are only about 60% accurate.
 


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Thanks for everyones replies. Its really supportive. Its good that I don't have the NF2 gene, but somehow managed to get 2 tumours. I will always worry that the left side will grow but fingers crossed it won't as the doctors said both tumours came at the same time one grew and one didnt. I think I am the youngest person in the UK to have an Acoustic Neuroma. I found one person in Canada who is a year older than me. It would be good to find more people my age on here. I am just new to this website so not sure how to work it yet. Is there any way I can find people my age on here? x

 


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