Worried about loss of hearing on non AN side

[tashakrny]

Hi, I'm new to this forum.  I had an AN removed 5 1/2 years ago.  I had already lost all of my hearing before surgery and remain completely deaf on that side (right side).  I recently got a BAHA, which I love!!!  A week ago I noticed that my "good" ear feels like it's stopped up, like I'm under water, and sometimes I can barely hear anything besides through the BAHA.  I saw my primary care doctor yesterday and he said my ear looked "perfect", no fluid or infection, but he wanted to treat me with medication to "open the ear canal".  I left his office very upset.  He dismissed my concern about another AN, saying "brain tumors are very rare".  I think that was a pretty obnoxious comment to make to a person who has had one!!.  The fact that he wanted to treat me with meds for a closed eustacian tube, with no evidence that it's closed bothered me because I'm pregnant.  He's prescribing medications that my OB said not to take while pregnant.  Well, I realized with my PPO, I don't need his referral to get a hearing test, so I called the doctor who did my BAHA surgery and scheduled a hearing test for a few weeks from now.  In the meantime, I'm getting more and more concerned.  The hearing loss is a constant reminder that something may again be amiss.  I'm overdue for my follow-up MRI for my original AN, but I don't want to have an MRI while pregnant.  Last MRI did show something where the original tumor was, but they didn't know whether it was post-surgical changes or regrowth of original tumor.  The doctor just said he'd keep following it with MRIs to look for growth.  Oddly, my body makes a lot of benign tumors in various locations (breast, thyroid as well as AN).  I'm having my 9th breast tumor removed in a week.  No doctor will speculate on a cause for the multiple tumors.  They just act like I should be glad they are all benign.  It makes me wonder where more tumors may be lurking that I don't know about.  I know that NF2 causes central nervous system tumors, not breast and thyroid, but I'm wondering how concerned I should be based on my recent hearing loss in my good ear.  I guess the mystery of all the other tumors is a separate issue, but I can't help but think it's odd for one person to make so many.  I'm also wondering if pregnancy hormones can cause an existing AN to grow faster.  I know that is true about breast tumors, but what about ANs?   Any thoughts would be much appreciated.

Thank you.

[jerseygirl]

Hi,

First of all, welcome to the forum! I hope you will find a lot of information and support here!

To answer your question: yes, pregnancy is known to increase AN growth via two mechanisms. First of all, pregnancy increases the growth of ALL tumors and even moles. Secondly, some ANs contain estrogen and progesterone receptors in them. The body if flooded with these hormones in pregnancy, so some ANs double and triple in size by the time the pregnancy is over. The same thing might happen with hormone replacement therapy, by the way. Some people with NF2 who have to live with their AN and other tumors for years, experience an increased growth during these times.

Besides NF2, there is another type of neurofibromatosis, called NF1. it is characterized by multiple benign tumors but not bilateral ANs. I think it is worth it for you to visit the closest neurofibromatosis clinic since they would know enough to make a connection or rule it out altogether.

As far as the clogged feeling in the ear during pregnancy goes, it can be absolutely normal during this period. I had it both times. If you are still concerned and the end is months  away, you can request Brainstem Auditory Evoked Response (sometimes it is named BAER, other times ABR). There is no radiation. The technician attaches electrodes to your head and tests an acoustic nerve on that side. If there is any growth on it, the response will be slow, hence the name. It is not 100% accurate but it's a good replacement for MRI when you cannot do it. For your sake, have an MRI w/without contrast as soon as you can!

                Eve