NF2, waiting and children

[hall0602]

I am 23 years old and I had my A.N. removed in 2005. my doctor told me because of my age that I could have NF2 and i have to constanly get MRI's to check. So far I am clear but he also said that it may not show untill I am older. I was just wondering if anyone else had to wait to find out. Also I am getting married next year so  the topic of children always comes up. My problem is that if i have NF2 i don't want my child to have it so I am arfaid to have children because if they grow up and have AN of NF2 i would feel as though it is my fault? has anyone gone through anything like this? Thank you always!

[NF-2er]

Hello;

   It is apparent your Dr. is relying heavily upon the latest diagonstic criteria for NF-2. Remember, this is a rare disease and being under 30 is but one piece of suspect criteria.!
   I had first symptoms at 19 and first AN removal at 27 in 1977. The second AN was not visualized on MRI until 1994 and was very small. I was not given an NF-2 Dx at the time. That came in 2000, so one counts a 33 year difference between obviously suspect ANs. I still have that AN at 57.

   Following is the latest diagnostic criteria ( modified form 1988 ) for NF-2 and also see note at the end. Dr Mia Macallum would probably have large input in this criteria as is probably the premier researcher and Tx specialist for NF in the USA:

  -> In the past decade, a revision to these diagnostic criteria of NF2 was proposed that concerns the addition of a section for presumptive or probable diagnosis of NF2. These modified criteria are listed as follows (adapted from Gutmann et al, 1997):


Definite diagnosis of NF2

Bilateral CN VIII schwannomas on MRI or CT scan (no biopsy necessary)

First-degree relative with NF2 and either unilateral early-onset CN VIII schwannoma (age <30 y) or any 2 of the following:

Meningioma

Glioma

Schwannoma

Juvenile posterior subcapsular lenticular opacity (juvenile cortical cataract)

Presumptive diagnosis of NF2

Early onset of unilateral CN VIII schwannomas on MRI or CT scan detected in patients younger than 30 years and 1 of the following:

Meningioma

Glioma

Schwannoma

Juvenile posterior subcapsular lenticular opacity

Multiple meningiomas (>2) and unilateral CN VIII schwannoma or 1 of the following:

Glioma

Schwannoma

Juvenile posterior subcapsular lenticular opacity
Baser et al studied 4 different sets of diagnostic criteria and concluded that none of them is adequate in diagnosing patients who do not have bilateral acoustic neuromas at the initial workup. They have proposed that a single set of diagnostic criteria should be devised to supplant the 4 existing sets, although when or if this will occur is not certain. <-


   If you are planning a family, know NF-2 inheritance is 50 % and you're not sure you have it. There is a blood test which is about 60% accurate. I would visit with a genetics specialist. A child born with NF-2 ( Wishart Variety ) usually has the most aggressive and debilitating variety of NF-2. One may or not think of the potential ethical concerns of the situation and I would visit with spouse, Genetics, and Clergy before conceiving. Especially if a blood test does show NF-2 even at the 60% accuracy factor. My real feeling is it is unlikely you have NF-2 considering the odds and lack of simultaneously occurring ANs, however.

   I hope this helps some. Please feel free to email me at russnf2@copper.net if you have further question and/or need.

   Best wishes for your best choice here!

   Russ

[tony]

A very detailed post from Russ - and thanks again
- if it really is the uncertanty for you, in terms of passing any problems on
There is one way to put the odds beyond doubt
Please do not be offended here - its probably the only way of
being near certain it cant happen
This is one to discuss with other halves etc
Basically within the various means of conception
- usually where young couples are struggling to concieve
There are ways where the genetic link from father to child
is no longer direct line - a compromise for sure
but the odds of further trouble drop back to 1:40,000
rather than maybe 1:2 - much better all round
I am not saying an easy choice
- but it is an option
Meantime
Best Regards
Tony

[Jeff]

This is a really sticky topic, but one that has to be discussed with significant others. I would like to share as one with NF2. I inherited NF2 from my father. This was before the NF2 mutation was identified. My brother and I have NF2. We were both born before our father had any problems.

My life has been so much more than NF2. I was diagnosed relatively late (36) and have had this condition progress so that now I am totally deaf. I have facial paralysis on one side.  I have balance problems too. But, I still have a great family, wonderful co-workers, and much to be thankful for. I have a daughter that I worry for. She has to have regular hearing tests and MRIs. Thankfully, the results have been good thus far. She was born before I was diagnosed, so I can't say what we would have done. I can say that I am glad that I was born..Nf2 or not. I had a rough surgery in April and nearly died, but I am thankful that I didn't.

I guess that what I am trying to say is that my life has been much more than this condition. I still am able to work, support my family, and maintain relationships with friends. I know others with NF2 who have more difficulties. One thing that I have learned is that there are no guarantees in life. I have resolved to make the best of my situation.

I wish you the best,

Jeff

[jerseygirl]

Hall0602,

I have grappled with this decision when I was 25 (I am now 44). Nothing was available back then, no genetic testing. Doctors argued over what I have and they still argue. We looked into what Tony is suggesting but decided to go the natural way because like Jeff said there are no guarantees in life. You could be passing on autism, cancer, lupus, MS, etc. and your child might have an NF-2 (or other!). It is a lifelong thing and nothing new came up. My AN , not previously  totally removed, regrew on the same side. My oldest is 17 now and will be scanned soon. That is what I have.

If I were you, I would do genetic testing to see what mutation I have on Chromosome 22, if any. Then I would make sure the child does not have it. The only unfortunate thing is that genetic testing is not 100% accurate, so if they cannot find it does not mean you don't have it.  I perfectly understand why you don't want your child to have NF2.

Another thing is the reason to be optimistic because NF2 is the genetic condition that is a lot of people are working on. The drug is in a pipeline and AN no longer means a death sentence. Moreover, if you find it soon and small, doctors can most likely save hearing! with the advent of genetic therapy, NF2 will be put to rest. This will definitely happen in your children's lifetime, maybe you will benefit as well... or may be you won't need to! Good luck with everything!

                               Eve