Getting Pregnant Post-Op: I worry

[emmalsack]

I am a year and a half post op and I am considering having another child. I have an almost 4 year old, and it was never my intention to raise her as an only child. I am less worried about my body coping (at this point I feel I have settled into my new normal) and more looking for reassurance for my worries.

1. Passing on my condition to my kids. I worry I may have NF2. When I asked my doc about genetic testing, he said it isn't reliable. So I then asked when we would think I was in the clear, and he said in a decade they would be pretty confident. I can't really wait a decade to make reproductive decisions.

2. My second issue is re-growth/ if a new tumor comes during pregnancy. My tumor was completely removed and my most recent mri in August looked good. But I worry that if something does crop up the pregnancy hormones will make it large again before it can be handled ( I was diagnosed with a 3 cm tumor).

3. I worry about being home alone with an infant and not hearing it. I currently still sleep on my hearing side (my baha site is still touchy) and then I sleep through everything, including the fire alarm. My 4 year old just crawls in my bed and hugs me to get me to wake up. I am concerned if my husband isn't home I won't hear the baby. Anyone have coping strategies?

4. The last is a stretch, but I will throw it out there to get it off my chest. I worry that I am not a good longevity bet and that more kids will just mean that my husband will end up saddled with more responsibility (either because I am incapacitated or passed away). I still struggle with guilt that my husband had to take care of a 2 year old and his wife most of last year.

So all that being said, it is just hard to take a leap of faith. I keep reminding myself no one has any guarantees ever. I could develop a whole different health issue that isn't on my radar. We never know what is in the genes we give our kids. Life comes with no securities or promises. And I feel like being pregnant is the holy grail of recovery. Finally healthy.

Thanks for any encouragement/ advice.

[PaulW]

1. Typically if you have NF2 and you have a 3cm tumour on one side you will have another acoustic neuroma on the other side as well. I would think it would be unusual to not have a second tumour, considering the size of your tumour. People with NF2 also are more prone to neuromas of the spine and meningiomas. I assume you don't have these. So all of that would indicate it is unlikely that you have NF2. Around 4% of AN sufferers have NF2. The chances of inheriting it are less than 50% as there is a sporadic NF2 which is not inheritable.
To summarise I don't think you fit the profile of NF2 without a second tumour.

2. Be comfortable that ANs do grow slowly and surgical removal is successful in 98% of cases.
If there is regrowth a very small amount of radiation can be given to stop the regrowth. Or you could have a second surgery too. If you are in the unlucky 2% you will probably face these decisions at least 2-3 years from now.

3. I know it's not the norm in our society to have children in the same bedroom or even the same bed. But for many societies this is the norm. We had both of our kids in our bedroom until they could walk. We had no problems moving them to their own bedroom when the time was right. If they are right next to you I imagine you will hear them.

4. Having an acoustic neuroma does not affect you life expectancy. Sometimes stuff just happens

I hope that helps

[emmalsack]

Thanks! The info on NF2 is particularly encouraging.

I am honestly not convinced I would hear an infant even in my room (which I would definitely do). I have slept through an alarm inches from my head for over 30 minutes...

[ccooper]

I had a 2 month old at the time of my surgery and I could hear him cry through my pillow in a room away from us. I also was very concerned about this so I got a vibrating monitor just in case but I didn't end up needing it because I just work up by hearing him. A mothers instincts If your last MRI showed clear, I wouldn't hesitate. I have to say, I think about your #4 all too often. I wonder how many years this ordeal took off my life and just the longterm pain (tolerable with Tylenol) wearing me down after the next few decades. And then I realize I'm just happy to be here, my husband as well, and life is already short. I certainly don't want to live to be a hundred so maybe this all did me a favor

[michellef08]

I am 3+ years post-op and 30 weeks pregnant with my first! My OB does want me to inquire of my ENT or surgeon if I will have any limitations when it comes to pushing, so I will do that. Has anyone ever asked this?

Honestly, for me, I trust that my surgeons said they got 100% of my tumor, and my follow-up MRIs have shown that. As far as re-growth - my thought is if mine does re-grow, it will most likely be so slow that I won't have to worry about treatment for another few years.  I'm just happy to be moving on with life!

Hope you can get past your worries!! Good luck!

[emmalsack]

ccooper, where did you get your monitor? I am very curious to check it out.

Thanks!

[Fran6774]

I am 3+ years post-op and 30 weeks pregnant with my first! My OB does want me to inquire of my ENT or surgeon if I will have any limitations when it comes to pushing, so I will do that. Has anyone ever asked this?

Honestly, for me, I trust that my surgeons said they got 100% of my tumor, and my follow-up MRIs have shown that. As far as re-growth - my thought is if mine does re-grow, it will most likely be so slow that I won't have to worry about treatment for another few years.  I'm just happy to be moving on with life!

Hope you can get past your worries!! Good luck!

I actually got pregnant 9 months post translab (surprise pregnancy!).  I was very worried and unprepared for this.  I felt it was too soon and was also worried about how my head would handle the pushing part.  I discussed it with my OB who responded that he's ok with it as long as I take an MRI w/o dye during the second trimester and he also needed a letter from my surgeon stating that I'm cleared to have a vaginal delivery.  Good Luck!  Wishing you an easy labor and delivery!

Fran

[michellef08]

Thanks! I called House and a doctor wrote me an note to give to my OB saying I should have no complications whatsoever with a vaginal delivery being 3+ years out from my AN surgery. She said the only thing she would maybe worry about is a CSF leak, but definitely not 3 years post-op.

[saratrehan]

Hi everyone,

I am considering getting pregnant again- i am 2.5 yrs post surgery , and 1 yr post gamma knife (after a regrowth). my doctor has given me the all clear, but i have many concerns that it seems this post highlighted - most notably a paranoia that my tumor will grow back or my symptoms will really flare up and i wont be able to take any medicines. my most recent scans have shown lots of necrosis, so that is obviously encouraging.

wondering how your pregnancy experiences were ? any encouraging words would be helpful!

my doctor said not to let my AN get in the way of life now, but its still so stressful considering the unknowns, or what ifs!

thanks,
Sara