Possible NF2... putting the baby thing on hold.

[MaryCPereira]

Hey everyone,
I'm new to this. Just signed up for the forum, and was just diagnosed this February. As of right now, the only diagnosis is one AN on the right side. However, he said there is a possibility for NF2 because he saw a tiny little spot on the MRI scans on the left side, and also because of my age. I'm going to Dr. Santos in Boston. He called the day after my first appointment to say that they looked at the scans more and think that the left side may be a blood vessel that they saw, but we are officially in the 6 month watch and wait period.

My question, I guess, is about symptoms. I guess nothing about my AN has been "normal". I woke up one morning after a migraine with decreased hearing. I know usually its gradual, mine was not. I also have a lot of headaches, and a ton of ear pain. It feels like I constantly have an ear infection. My hearing is still pretty good, but loud noises hurt. I love Adele, but if I have it on too loudly, it hurts a lot. I now carry around the wax ear plug things, so on days when it's bad, I can just plug it up and it seems to help a little bit.
Well, unfortunately, this is also happening on the left side. In fact, all of the symptoms are happening except for the hearing loss. Tinnitus is pretty bad in the right side, which, again, was a sudden thing, but it comes and goes in the left.
I went back to Dr. Santos, and he said that it could be because I clench my teeth at night. But I have always done this, and it's never hurt like this before. Also, I followed his instructions and now wear a mouth guard at night, but the pain hasn't changed.

So, I don't know what to think about the whole thing. I know it's only 6 months until my next scan, but that's a long time to put the child thing on hold when we have already been trying for over a year. We decided that if it is NF2 to stop trying to have children, and that we will be a pets family instead. But that's going to be a huge blow. My husband and I love each other very much, and I know we will get through it, but we just bought a big house to fill with babies, and now we might never have any.  Anyway, that is besides the point right now.

Does anyone else have similar symptoms? I know they are rare, to have the pain and what not, but I can't deny that it's definitely there. I also feel tired 95% of the time, and there are times when my ear feels or sounds funny and I check to see if I can hear from it.

Thanks for your time. I appreciate any advice I can get!

PS - I am meeting with Dr. Baker at the end of this month to discuss the surgery. Dr. Santos thought it would be a good idea, just to ask any questions I might have. I know I don't wanna wait for long. If it isn't NF2, I want it out asap so that we can get on with the baby thing.

[nftwoed]

Hello Mary;

  To my understanding, if neither you or your husband have full blown NF-2, the chances of the new child having NF-2 are still 50/50. I think waiting to see what the spot does is wise but I believe even then the odds for the infant are 50/50 if you indeed have NF-2. Hubby doesn't.  Re, your Sx, I wouldn't expect headaches or ear pain unless they are stress/tension/recruitment related.
  Ear pain from sound with a hearing loss would be known as 'recruitment', and is common, as well as tinnitus acccompanying hearing loss.
  I've hear good things re, Dr. Santos. I'm unsure if he would wish a blood test for NF-2. They are but 60% accurate.
  Your Sx, however, tell me ( an NF-2er ) you have NF-2, but please remember I am not a Dr. and obviously not qualified to make that Dx. Would say though, that nervousness can cause a host of problems!
  Best wishes to you, Mary.
 

[MaryCPereira]

Thanks for the reply. I appreciate it! It doesn't sound like Dr. Santos is looking to get a blood test done. I think we will just wait and see what happens, and if it's NF2 we will handle it then. Just this limbo period I'm struggling with. 

[krbonner]

I can't comment about nf2 as that's not an issue for me. I did have sudden onset of my symptoms and I did get a lot of pain on y AN side before having surgery.

Can I ask, what's the concern about having children? Is it the genetics of potentially passing on nf2? Are you waiting to see what the MRI says 6 months from now? I don't know what the risk is with that. But I did go through a pregnancy (and most likely two) with the AN in my head, and a third post-op. An AN, in and of itself, shouldn't be a barrier to having children if that's what you want.

Good luck!
Katie

[nftwoed]

Hi;
  If I understand correctly... Everyone has an NF-2 gene on chromosome 12. If anyone, parent or child, has only 1 mutation of the gene, they will not develop full blown NF-2.
  If you are a person with the disease NF-2, that means you either inherited the disease directly ( 50% ), or received a defective gene with 1 mutation from either of the parents and suffered another mutation ( spontaneous mutation ) of the gene, or deletion of the gene.
  As it takes 2 mutations of the gene, or a complete deletion of the NF-2 gene to have the disease NF-2, that other 50% suffered a spontaneous mutation of the one time, mutated gene.
  Thus, it requires 2 mutations of the gene, or a deletion of the gene to develop the disease and tumors.
  Hard to put into words. Will say again, anyone with the disease NF-2, received a defective gene from one of the parents. It likely had just 1 mutation, however, but, the gene mutated again upon conception, or shortly after, on it's own. Clear as mud? Yes?

[BeckyMax]

I don't even know what to say, I feel foolish for fretting over the possibilityof not being able to scuba dive.  Before you make a decision, I would definitely look into genetic counseling, if your concern is passing it you your children.  Perhaps you are concerned about losing hearing in both ears and you are concerned about raising a child while deaf.  Take the time to explore your options, 6 months sounds like forever, but it isn't all that long in reality considering many couples try for years to have children.

((((((((Hugs)))))))))

Becky