Treat immediately or wait for growth?

[CA Marti]

Hi Everyone,

     I just had a video meeting with another radiologist. I've only had one MRI so far which was the time that diagnosed the acoustic neuroma in late May. This is the second gamma knife radiologist I spoke with that advised me to treat it right away and to not wait until my next MRI for growth before treating it.Why? I don't understand this. Everything I've read has advised people with small tumors to wait for growth before treating it. When I asked why he responded that because mine is extending out of the canal it is more likely to cause hearing loss, and that treating it with gamma knife would help to preserve the hearing. If this is so slow growing why would waiting six months make a difference? Has anyone else on watch and wait experienced rapid hearing loss within six months of their diagnosis? The neurosurgeons I met with advised me to watch and wait for six months and to take the conservative approach. My only symptoms now are tinnitus. This just gets more confusing as it goes along. Please let me know what your thoughts are on waiting or treating.
Thanks!
CA Marti

[alschneid]

Hi there. From my experience, it’s ultimately going to be your decision, which is what each surgeon that I met with told me. The first one told me that he would recommend removing it to preserve my hearing as well. This was a bit of a shock to me because I thought for sure I would be advised to just wait and watch as my AN was also relatively small.  In hindsight I almost wish I would’ve waited because I had close to perfect hearing and now I’ve lost all hearing in my right ear. But I knew what the risks were and wanted to move forward with my life without worrying about growth or putting my life on hold in the future to revisit treatment options. I would say wait and watch if you are comfortable with the possibility of losing some or all of your hearing. But then again it may not grow and your hearing may be fine! Have you had any noticeable hearing loss or just the tinnitus?

[CA Marti]

Thanks so much for your input. I do not have any further hearing loss since this was diagnosed in May,and have very functional hearing in my right ear. I do have sensorineural (high frequency) loss in my right ear but I have had that for the past 5-10 yrs or so. Since I have otosclerosis, a separate hearing disorder, I get hearing tests every 6 months. It's hard to know if the hearing loss is from the otosclerosis or from the acoustic neuroma. Now that I've had surgery for the otosclerosis on my right ear, and further hearing loss would likely be from the acoustic neuroma. I'm guessing that the high frequency loss in my right ear is due to the acoustic neuroma but that damage has already been done. I also have otosclerosis in my left ear but don't have the high frequency loss in that ear, thankfully.
     I just think it's strange that I got two opinions to treat this with gamma immediately and to not even wait to see if there is growth.

Thanks!

CA Marti

[CA Marti]

alschneid,

     I'm sorry that you lost your hearing, but glad you were able to remove the tumor and put all of this behind you. There is no question that there is an advantage to having it taken care of and being able to move on with life. Honestly, I think most of us with an acoustic neuroma are probably going to lose most if not all of our hearing eventually, with the exception of a small amount of people who happen to get lucky with their treatment. Congratulations on getting your surgery and being able to move on with life.


CA Marti

[judyl]

Marti,
I have been on W&W since 2017 when diagnosed with a 1.4cm x 6mm x 5mm AN in my left ear. My hearing loss has been stable with about 80% word recognition and I am thinking about a hearing aid.  My only other symptoms are occasional vertigo that is primarily positional in nature, which has improved. My most recent MRI showed at 1.2 cm x 5 x 5 AN and with a new finding of a pituitary microadenoma. My neurologist ordered some blood work, which came back within normal limits, and recommended follow up in a year with another MRI and office visit.  I saw an ENT at diagnosis and have a consultation with another ENT next week regarding the hearing loss. I also consulted with a surgeon by phone at the House Clinic. No one recommended any urgency to doing anything, although the House Clinic surgeon said my chances for a better surgical outcome and hearing preservation go down the longer I wait for surgery. However, I am 67 and not sure I want to go through a 7+ hour surgery that can result in more symptoms than I have now, even if I do lose more hearing.

It sounds like it is related to the growth pattern of your AN. If you wanted to consulted with House Clinic, you would need to send them copies of your CDs and any other relevant information.  What is your current word recognition for hearing? Do you have a hearing aid?

[CA Marti]

Judyl,
Thank you for your input. My speech recognition on the acoustic neuroma side (right ear) is currently 92% and the hearing hasn’t decreased or changed since the last hearing test 6 months ago. I have my second MRI coming up on Nov.22 so I am pretty anxious about that but trying to remain positive. It is encouraging to hear that yours hasn’t grown but I don’t know what a pituitary microadenoma is but I’m sure it’s good news that it hasn’t grown. I do have a hearing aid on my good ear but that’s because of a separate hearing disorder. I don’t use a hearing aid on my right side because I have sensitivity to noise in that ear and can still get by without one. At this point it has been almost six months since my first MRI, and so far I haven’t had any changes in my hearing.
Thank you for any suggestions you may have. I’m 51, so really could go either way with gamma or surgery but if it grows J am leaning towards gamma.
Thanks!
Marti

[Janoffh]

I hope the MRI went smoothly.  Your response from the doc was very different than mine.  I went to three people who all said W&W is the way to go.  I have hearing loss into the moderate-severe range now on my neuroma side, but no other symptoms thankfully!  The first doc, when I asked about preserving the hearing, said that I should assume that the hearing will eventually be lost.  Sure, there is a chance that a procedure may retain the hearing, however, it is more important to choose a what to do based on what is medically the better choice. I certainly get that and am glad to be on W&W for now...

[CA Marti]

Janoffh,
Thanks so much for your input. I did decide that wait and watch was the way to go and several of the doctors I’ve seen did suggest that approach as well. Dr.Link, Dr.Friedman and Schwartz, and Dr.Sheehan all suggested to initially wait 6 months.  There were only two radiologists who suggested treating it immediately, and that initially made me nervous.
     Thank you for asking about the MRI. I just had it done yesterday but haven’t received the results yet so I am very nervous and am really hoping for good news. Have you received your second MRI yet?
Best wishes,
Marti

[Janoffh]

Yes and short answer, very good as it didn't change at all.  I had a hearing drop in the left ear recently and was worried so the doc moved the mri up. Now instead of 6 months he wants me back in a year, so I am very glad about that. Thank you for asking

[CA Marti]

Just to update, I just got my 2nd MRI results back and it's good news. "no significant change in size." Measurements are now 10 X 8 X 6. I'm very relieved. I have been taking daily aspirin of 81 mg and turmeric off and on, I have no idea if that did anything or not but I will continue taking them just in case. I also have been trying to follow Derek's top tips for the watch and wait, although I don't get as much exercise as he suggests.

Thanks everyone for all of your support!

Marti