Hi Carolina,

My first post here.  Saw your post and felt I must reply!

While I have not had the radiation treatment yet, I will in 3 months time.  I am in Switzerland and at the hospital in Lausanne where I am being treated (CHUV), this is standard practice.  They leave a little bit behind in order to ensure the nerves are not damaged.  I just had my 3cm AN/VS removed on 17 Feb, only 5 days ago with good results - have some hearing left in my left ear, balance is OK and no facial nerve issues.  It took 9 hours and I still feel in a fog which is annoying, but each day is better.  The retrosigmoid scar is quite impressive!

My surgeon told me the remains of the tumor "ball up" after a few months making it easy to zap with radiation.  They would normally use the gamma knife to do it, but now that importing radioactive substances into Switzerland is illegal, they cannot get the cobalt isotope for the GK machine and we will have to use another method. 

Rest assured you are not the only one.  And if you ask me, removing most of the tumor surgically and treating the small remainder with radiation makes good sense! It allows for the nerves to be preserved more easily.

Good luck!
Andy

I am unsure re hormones but was in our news how progesterone a factor for meningiomas. I think its this hormone more than estrogen which may be a factor. My AN diagnosed at age 55 - I had been on HRT and this may have increased growth. My specialist felt mine was a very old AN and I have had two children so possibly it had started and stopped - then started with the HRT years later.  Its interesting that mifpresterone is being looked at for AN. Mifepristone (RU486) is a progesterone and glucocorticoid receptor antagonist. The truth is there are many pathways that cause AN growth and hormones may or may not be a factor since from what I have read ANs are unpredictable and are not all the same. They can track without contrast. A baby is such a blessing!

Hi all,

I am considering pregnancy and am trying to understand the risk of regrowth after my tumor has been treated.  Here is the background on my tumor.  In October 2019 I got an MRI because I was having strange symptoms (I thought I had a brain tumor),  I was told the MRI was normal.  A year and half later I had my daughter in March, 2021.  3.5 weeks after having her I was diagnosed with a large Acoustic Neuroma.  I was told by my neurosurgeon that the tumor was actually present in the 2019 scan but was very small so it was missed.  The tumor when found in 2021 was 2.6 cm (large and pressing on my brain stem) so it seems anecdotally that pregnancy hormones may very well contributed to my tumors accelerated growth (though no one can tell me for sure).  I had retrosigmoid surgery to remove the tumor in July '21.  They left a small amount of tumor (10%) due to risk of compromising the facial nerve.  The residual tumor was treated with Radiation in February '22. 

Since that time, following radiation the tumor was initially stable for one year.  In August '24 the tumor doubled in size, initially my neurosurgeon told us we needed another brain surgery, however my radiation oncologist told us to wait as the tumor may have doubled in size due to the radiation treatment.  I have had 2 scans since (Nov '24 & Feb '25) both scans have been "stable and unchanged".

I am almost 40 and would like to expand my family, though have concerns about regrowth.  My radiation oncologist thinks it is safe for us to try for pregnancy.  He claims Acoustic neuromas are not typically affected by pregnancy hormones - though as I stated my history above that doesn't seem to be the case for me - anyone else??

Has anyone gotten pregnant after their tumor was treated?  If so, did you experience regrowth?  What type of treatment did you have radiation or surgery or both?  Were you able to get MRIs with contrast safely throughout your pregnancy? 

My biggest fear now is that my tumor is almost the same size it was when it was resected back in 2021.  So if it were to regrow their isn't a ton of space to expand, the risk feels higher to me, but no one is really able to give me a clear recommendation. 

Would love to connect with anyone who is able to offer insight here!  Thanks so much,
Michelle

Karin,

thanks for sharing, I am glad I am not the only one.  I hope it disappears for you too.

Take Care,

Dan

I must be crazy too, I’ve heard music a few times. I also get “pings” occasionally, from the aliens I guess…