Awaiting Daughter's Final Test Results....Some Questions

[dnamama]

Thanks for any thoughts.
Our 22 y o daughter is across the country. She is working in the city where she attended college. Whenever she flies home, she is somewhat nauseated and feeling off balance when she gets off of the plane. I am empathetic because I have Meniere's disease, and also find motion sickness can be familial. However, 6 months ago, on Labor Day weekend, she had that feeling when she arrived, recovered and then was quite sick the next day with vomiting/nausea/balance issues. I took her to the ER as she needed to travel back on a flight the next day. CT scan was read as nl and P.A. attempted to clean out her right ear, which was incredibly painful and I finally had to ask him to stop.

My daughter got back to Dallas and to work, but was in great pain and had no hearing on that side all week. I found a respected ENT and she visited him for follow-up. He worked her up with audiologic testing and she had conductive hearing loss in that ear, and he was concerned she had bony dehiscence. His CT scan ruled that out. He prescribed nortriptyline and said to take it for 6 weeks; when she returned then for f/up, if she was still symptomatic, he would do an MRI.

She never got the RX filled and felt better at 6 weeks, so no MRI was done.

She has a decent number of headaches, but has had them for about 5 years and we have a familiial pattern of those. Two weeks ago she wrote that she was having a numb tongue, lip, temple area, etc. Went to the internist the following day, who ordered a sleep study and an MRI. We were shocked when she called our daughter with the radiologist's impression of the MRI: an acoustic neuroma. She sent the MRI report and CD to our daughter's ENT. He is awaiting a contrast MRI of the auditory canal and is really not giving us any impression he has; just told my daughter not to lose one wink of sleep until he'd gotten his own scan's results in.

A few questions, please:
1) Have you gotten an impression of an AN on CT scan that was then found not to be an AN on contrast MRI?
2) Have you experienced transient symptoms of facial numbness?
3) Have you felt ill when flying prior to diagnosis?
4) At what size would surgery be recommended for a 22 yo with hearing in both ears, but who is symptomatic?
5) How long does one have to wait after surgery to fly?   

Obviously we are hoping that our daughter will not have to deal with this, but if she does, we have a lot of logistical issues about treatment location, etc. Thus the question about ability to fly afterward, since she already feels sick when she flies now.

Thanks for your patience with my barrage of questions. Trying to do my research with you and appreciate your assistance. Mom is being strong for daughter, but doing research all the while. Thank you!

[CHD63]

Hi dnamama .....

First of all, take a deep breath.  We are all here to walk with you and your daughter through these next steps.  It is, indeed, a scary and troubling time but do try to relax until you have all of the needed information.

I hope you and/or your daughter will send for the free informational material available from the Acoustic Neuroma Association.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy

The gold standard for diagnosing an AN is an MRI with contrast because it will pick up even small ones that CTs or MRIs without contrast might miss.

In answer to your questions, the symptoms we all have or had can vary widely depending on the exact place the AN starts growing and which direction it spreads.  ANs (also known more accurately as vestibular schwanomma) are an outgrowth of the covering of the vestibular nerve, which is part of the auditory nerve.  Therefore, it begins growing within the internal auditory canal, which also carries the facial nerve.

In my case, my first symptom was balance problems.  I never had vertigo nor nausea associated with my AN, just a very concerning disorientation feeling.  My first MRI was done without contrast (through a mistake by my doctor's office staff) and read as negative for abnormalities.  A year later when I began having a stuffed ear feeling, another MRI was done with contrast and found the 2+cm AN.  My first surgeon evaluated both MRIs and commented that he thought an AN that size should have at least shown a shadow on the MRI not done with contrast, but it did not.  I do not think I flew anywhere within that year.  I did fly from the eastern US to California for my second surgery and had no problems going out, nor coming back.  I flew home 12 days after surgery with no issues, other than fatigue, due to delayed flights related to the weather.

Thoughts and prayers.  Let us know the answers from her doctor.

Clarice

[ANGuy]

If I am understanding you correctly, she has had two CT scans?  CT scans deliver high doses of radiation and should be used sparingly.  She is very young and could very well require CT scans for other reasons over time and too many CT scans is a bad thing.

[ANER]

Thanks for any thoughts.
Our 22 y o daughter is across the country. She is working in the city where she attended college. Whenever she flies home, she is somewhat nauseated and feeling off balance when she gets off of the plane. I am empathetic because I have Meniere's disease, and also find motion sickness can be familial. However, 6 months ago, on Labor Day weekend, she had that feeling when she arrived, recovered and then was quite sick the next day with vomiting/nausea/balance issues. I took her to the ER as she needed to travel back on a flight the next day. CT scan was read as nl and P.A. attempted to clean out her right ear, which was incredibly painful and I finally had to ask him to stop.

My daughter got back to Dallas and to work, but was in great pain and had no hearing on that side all week. I found a respected ENT and she visited him for follow-up. He worked her up with audiologic testing and she had conductive hearing loss in that ear, and he was concerned she had bony dehiscence. His CT scan ruled that out. He prescribed nortriptyline and said to take it for 6 weeks; when she returned then for f/up, if she was still symptomatic, he would do an MRI.

She never got the RX filled and felt better at 6 weeks, so no MRI was done.

She has a decent number of headaches, but has had them for about 5 years and we have a familiial pattern of those. Two weeks ago she wrote that she was having a numb tongue, lip, temple area, etc. Went to the internist the following day, who ordered a sleep study and an MRI. We were shocked when she called our daughter with the radiologist's impression of the MRI: an acoustic neuroma. She sent the MRI report and CD to our daughter's ENT. He is awaiting a contrast MRI of the auditory canal and is really not giving us any impression he has; just told my daughter not to lose one wink of sleep until he'd gotten his own scan's results in.

A few questions, please:
1) Have you gotten an impression of an AN on CT scan that was then found not to be an AN on contrast MRI?
2) Have you experienced transient symptoms of facial numbness?
3) Have you felt ill when flying prior to diagnosis?
4) At what size would surgery be recommended for a 22 yo with hearing in both ears, but who is symptomatic?
5) How long does one have to wait after surgery to fly?   

Obviously we are hoping that our daughter will not have to deal with this, but if she does, we have a lot of logistical issues about treatment location, etc. Thus the question about ability to fly afterward, since she already feels sick when she flies now.

Thanks for your patience with my barrage of questions. Trying to do my research with you and appreciate your assistance. Mom is being strong for daughter, but doing research all the while. Thank you!

Answers:
1) Mine was found with an MRI with contrast
2) My symptoms are mild, minor balance issues after working out hard, tinnitus, fatigue.
3) I have never felt ill while flying all though I fly pretty infrequently.
4) This decision is ultimately up to your daughter with input from her medical team. Hopefully, she gets several opinions and unless it's huge I wouldn't rush into a treatment option based upon a singular opinion.  I have had 4 opinions, two from California Doc's, one from the Local Doc and one from Boston, MA.. Personally, I have chosen the Boston team as it is a highly reputable team within an hours drive from where I live.  They haven't given me a "size" when we'll have to treat it but all of the opinions have told me that when the time comes they have all recommended surgery. 
5)Many patients fly across the country to get treatment and are able to fly back to their home areas within a few weeks.

Being her Dad I'm sure it's hard on you as well. I have told my wife that it's probably harder for her and my parents to deal with this than it is for me.  My old man took the news pretty rough as did my mom.  After the initial shock wore off we are all doing well.  Good luck to you and your family, we're here for you.

[dnamama]

Thanks for your comments. Eager to hear from anyone else who can share information, as well.
Here's another question: The ENT prescribed nortriptyline for 6 weeks initially. If she was still symptomatic after taking it, he was going to move to MRI. She never took it, because she started feeling better....and at her 6 week follow-up he did not order an MRI, because she was better. Anyone understand the nortriptyline? Just wondered why that would be used in this setting, so that I can better understand it physiologically.
My daughter is handling this very maturely. Did I mention in my first post that my mother had a significant meningioma by her optic nerve, found incidentally when she fell over a box and hit her head and required a CT? I feel like it's deja vu all over again. Has there been any research about the prevalence of meningiomas and acoustic neuromas in a familial pattern? Or does anyone have a similar, anecdotal story?
We are letting my daughter lead the way, but she knows that we are doing our research to best help her. I really appreciate your support and education!

[michellef08]

I was 27 when diagnosed so while rare, it does occur in younger patients.

Here are my answers based on my experience:
1 & 2) N/A - I didn't have a CT scan, only an MRI with contrast, and no facial numbness.
3) I definitely had motion sickness while flying pre-surgery. I was so sick on my flight out to California for my surgery that I threw up in the little bag provided on the plane, and then was out of commission for the rest of the day. Luckily - after surgery - I no longer have that motion sickness! I also had sporadic headaches pre-op that I thought were "normal - that everyone popped Advil a few times a week" and those have also stopped post-op!
4) I consulted with 3 teams of neurosurgeons and each recommended surgery due to my young age. As the long-term effects of radiation are not scientifically known, it wasn't recommended for me.
5) I flew home 10 days after my surgery across the entire country, with no issues at all!

The best advice I can give is to do as much research as you can handle until you find a treatment plan that feels right for you and your daughter. My mom is a nurse, so she had all the same feelings you did. We just started researching AN surgeons with the most experience, set up appointments, and scheduled my surgery with the team that felt right. Everyone's AN journey is different depending on tumor size, location, symptoms, risk aversion, willingness to travel, etc.

[areles]

hi, dnamama.  my heart goes out to you, as i JUST went through this with my son, likewise 22.  it's scary and daunting, but we're here for you.

1) in my son's case, it was found out of the gate with a contrast MRI, as the AN was suspected and so they went straight to that.  i can tell you that i saw the MRI both with and without contrast, and without, everything looked fine; with, that thing lit up like the moon.  i would expect that if it was seen on a CT, the contrast MRI will confirm it and provide more detail to its size and impact on the pons.  unfortunately.

2) my son reported no facial numbness before surgery or after (so far; four weeks post-op as of tomorrow), so i cannot speak with any authority on this other than to say that in my readings, it seems that those with large tumors (or tumors that are situated *just so*) will result in said facial numbness.

3) the last time my son flew was about two years ago; no reports of nausea at that time.

4) this is a question better answered by physicians, but i CAN offer that when we were consulting, it seemed there's a definite preference for surgery with ANs over 1.5cm, at which point it becomes about which method.  i'm not sure how large your daughter's is, of course, but that seemed to be where the docs we consulted with started recommending surgery.   in your daughter's case, i would anticipate the physicians would recommend surgery, regardless, by virtue of your daughter's age.  radiation on young people generally isn't a go-to, if for no other reason than the longterm effects are unknown (at least according to the doctors i spoke to, and everything i've read).  BUT, every case is different, and there's no anticipating what they'll recommend in your daughter's case.  i would echo others' advice to get multiple consults; at least three.
 
5) that's a question i'd like answered, as well!  i'll be discussing with my son's surgeon on thursday due to a trip coming up, and i'll be happy to comment again to tell you what she says.  i have heard of folks flying within a week of surgery (notably, to go home after treatment); i think a lot of it comes down to each individual case and how one recovers.

Thanks for any thoughts.
Our 22 y o daughter is across the country. She is working in the city where she attended college. Whenever she flies home, she is somewhat nauseated and feeling off balance when she gets off of the plane. I am empathetic because I have Meniere's disease, and also find motion sickness can be familial. However, 6 months ago, on Labor Day weekend, she had that feeling when she arrived, recovered and then was quite sick the next day with vomiting/nausea/balance issues. I took her to the ER as she needed to travel back on a flight the next day. CT scan was read as nl and P.A. attempted to clean out her right ear, which was incredibly painful and I finally had to ask him to stop.

My daughter got back to Dallas and to work, but was in great pain and had no hearing on that side all week. I found a respected ENT and she visited him for follow-up. He worked her up with audiologic testing and she had conductive hearing loss in that ear, and he was concerned she had bony dehiscence. His CT scan ruled that out. He prescribed nortriptyline and said to take it for 6 weeks; when she returned then for f/up, if she was still symptomatic, he would do an MRI.

She never got the RX filled and felt better at 6 weeks, so no MRI was done.

She has a decent number of headaches, but has had them for about 5 years and we have a familiial pattern of those. Two weeks ago she wrote that she was having a numb tongue, lip, temple area, etc. Went to the internist the following day, who ordered a sleep study and an MRI. We were shocked when she called our daughter with the radiologist's impression of the MRI: an acoustic neuroma. She sent the MRI report and CD to our daughter's ENT. He is awaiting a contrast MRI of the auditory canal and is really not giving us any impression he has; just told my daughter not to lose one wink of sleep until he'd gotten his own scan's results in.

A few questions, please:
1) Have you gotten an impression of an AN on CT scan that was then found not to be an AN on contrast MRI?
2) Have you experienced transient symptoms of facial numbness?
3) Have you felt ill when flying prior to diagnosis?
4) At what size would surgery be recommended for a 22 yo with hearing in both ears, but who is symptomatic?
5) How long does one have to wait after surgery to fly?   

Obviously we are hoping that our daughter will not have to deal with this, but if she does, we have a lot of logistical issues about treatment location, etc. Thus the question about ability to fly afterward, since she already feels sick when she flies now.

Thanks for your patience with my barrage of questions. Trying to do my research with you and appreciate your assistance. Mom is being strong for daughter, but doing research all the while. Thank you!

[dnamama]

We received the wonderful news that our daughter does not have an AN, as was the impression on the MRI w/o contrast and was in line with her symptomatology. THANK YOU for your graciousness and generosity in sharing thoughts with this unnerved "mother at a distance". You kept me from coming completely unhinged over the 2 week wait. I will continue to think of all of you, after learning so much about this very challenging diagnosis with challenging treatments. You are remarkable. All of you.