Author Topic: Newbie looking for advice on decision-making  (Read 1246 times)

forecast

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Newbie looking for advice on decision-making
« on: July 08, 2022, 07:35:00 am »
Dear all,

I'm hoping to seek some advice from all of you about decision-making; here is my situation below.

I am a woman in my early 30s and got diagnosed this April. I was feeling head pressure, headache, and dizziness in mid-March, plus one episode of vision blurriness. These symptoms led me to see several neurologists, and finally, an MRI with an intention to "rule out" serious problems found a right-side AN. Three years ago, I had one episode of serious vertigo, which would likely be linked to this AN! The original report only noted the tumor is "8mm", then several other second opinions reading the MRI said it's "10x6x6mm" or "9x6x6mm" or "10x6x7mm" - I guess there are some measurement differences. Docs said I could have the AN for 4-8 years. My hearing has been quite normal so far, despite there being like a 10-DB difference between my two ears at the highest frequency when last tested in May. Word recognitions are similar like 100%/96%.

Since the diagnosis, I have been consulting doctors across the nation (UCSD, House, NYU, JHU, Columbia, Cornell, Mayo, Penn, Houston Methodist)... Non-surprisingly, I have received so many different recommendations. I am pretty convinced that I should have surgery at some point, but I feel unsure about the best time for surgery weighing all pros and cons. Currently, my dizziness and headache are gone (I guess my balance nerve adapted) but with the main symptom of ear pressure/fullness, which happens 3 days a week but I can bear with it. 

My biggest hesitation is hearing loss during the surgery. Although my AN is not huge, I was told that it's very further extended into the internal auditory canal (i.e., close to the cochlea) and almost fills the IAC. One doc said there is only a 20-30% chance of hearing preservation, two said around 50%, and two said 60%-ish. Docs also said there is a 50/50 chance that I could still have a hearing in the next 5 years if I do not do anything (of course, the risk of surgical hearing loss would be much higher at that point I guess). There is one experienced Doc even suggested waiting until I lose all hearing then doing a Translab + cochlear implant... I am in a profession where hearing is quite critical (I teach in a college); I am quite concerned about how the prospect of SSD would affect my career...

I have a couple of questions hoping to get your insights:
1) Any of you have AN similar to my situation (e.g., filling the canal and/or close to the cochlea)? What's the surgical outcome like?
2) Any of you have hearing loss and are in a similar profession to mine? What should I expect when being SSD in a classroom or a conference?
3) My husband and I are planning to have kids while this AN news hit... I know there is inclusive evidence on pregnancy and AN growth (Docs said no firmed relationship but it seems there are several cases of rapid AN growth during pregnancy I learned on this forum and elsewhere). Have any of you gotten pregnant while having AN? What to expect in that case? How much would 1-2 years (presuming we have a baby) significantly alternate the surgical outcome?
4) Any advice on reducing ear pressure/fullness?

Thank you very much!!

donjehle

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Re: Newbie looking for advice on decision-making
« Reply #1 on: July 09, 2022, 01:24:53 pm »
Dear forecast,

First of all, I want to thank you for making your first post on the ANA Forums!  That is where we gain the most benefit -- when we share our experience with others who are also dealing with acoustic neuromas.  Posting your story not only can help you, but can help hundreds of others who read what you have written but never post anything themselves.

Secondly, I want to commend you for your vast research!  Obviously, you have learned a lot about acoustic neuromas (or vestibular schwannomas).  And I am impressed that you have consulted specialists at several of the top AN hospitals across the country.  I am sure it must be confusing to you to receive so many different recommendations -- but that just underscores the importance of doing what you have done.  Some people just go to a neurosurgeon who is closest to them and only receive one opinion on what they should do.  You, on the other hand, have been given a lot of options.  While that may feel overwhelming, it is a blessing in disguise.  You can go to the place where you feel most comfortable with the neurosurgeon and his/her recommendation.  I wish others would do what you have done and investigate their options.

The timing of the surgery can be tricky, especially if your symptoms are not debilitating.  Some would say. "You are young, so just watch and wait.  Why risk having surgery which could cause you to lose your hearing or paralyze part of your face until the tumor grows big enough to where you have to do something?"  Others might say, "Have them cut it out as soon as possible!  Why let the tumor grow any larger?  The larger it grows, the more risks you face."  So, the timing issue is critical, and only you can determine what timing works best for you.

And speaking about timing, that could have an impact on what you plan to do about having children.  If you plan to have the surgery soon, then my recommendation would be to wait for having kids until after the surgery so that there is no risk or rapid growth during pregnancy (since you wouldn't become pregnant until after your surgery).  On the other hand, if you take the watch and wait approach, then it may not be practical to wait until after the surgery.  The timing of your surgery affects so many things!

My initial MRI revealed a vestibular schwannoma half the size of yours.  My neurosurgeon recommended watching and waiting.  He said we should wait six months and then take another MRI and see how fast the AN is growing since it was so small.  At the time of that recommendation, my word recognition was nearly 100% and my audiogram revealed very little hearing loss in my AN ear.  While waiting during these six months, I lost my hearing almost completely in my AN ear.  My WRS is now less than 12%.  So, there is no guarantee that you will keep your hearing while you wait for surgery, and, as I said, my AN was half the size of yours.  And my neurologist says there is nothing that can be done now to restore my hearing.

While I am not a college teacher (like you are), I am in a profession where listening is absolutely critical (I am a hospital chaplain).  When I lost my hearing while waiting and watching, I was afraid I would also lose my job.  However, there are cochlear implants and other options available to you to help with your hearing.  I chose to go with a CROS hearing aid system where I wear a listening device on my AN ear which resembles a hearing aid.  I also wear a receive on my good ear which also resembles a hearing aid.  Now when a patient or a nurse at my hospital says something in my AN ear, the microphones hear it and transmit it to the device in my good ear.  So, I'm able to hear everything that is said.  I had heard that some people have a hard time hearing with the systems at conferences or in restaurants.  But my audiologist put a setting on mine to hear in noisy places, and I was surprised at how well I could hear in restaurants, and I have not had any problem hearing while at conferences.  CROS or BICROS systems are very expensive and are not for everyone, but it works well for me.  I have a friend who teaches in college, and he had a cochlear implant done.  It took him a while to become adjusted to it, but now he is teaching his classes without any problem.  I share this with you just so that you know that, even if you do lose your hearing, there are hearing options available and functioning well on your job should not be in jeopardy.

My heart goes out to those who have had AN surgery and have had facial paralysis as a result.  I think that is a more challenging road than those of us with SSD have experienced.  Most people cannot tell that I'm essentially deaf on one side.

But keep us posted, forecast, on your continued journey and on when and where you will have your surgery.  Thanks again for sharing with us!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

TrueKnits

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Re: Newbie looking for advice on decision-making
« Reply #2 on: July 11, 2022, 05:23:54 pm »
Hi,
Our tumors are similar in size and location relevant to the internal auditory canal. I'm glad to hear you still have such good hearing!
Mine has already caused significant loss above 1khz and dropped my word recognition to 65%.
I have retrosigmoid surgery scheduled for August 12th. I was given a 33% chance of hearing preservation.
I don't teach college but do teach Sunday School and am the Bassist for our church. My hearing is very important (as is everyones) and I'd rather take the shot at keeping what I still have left than wait and lose it all by the time I'm 50 anyway.
I'm also experiencing significant balance issues and some facial twitching. I'm highly motivated to just get this thing out and work on recovery.
« Last Edit: July 11, 2022, 05:28:35 pm by TrueKnits »
10.4 mm Right Side AN Diagnosed 5/25/2022
Retrosigmoid Surgery Scheduled for 08/12/2022
Doctors Neff and Van Gompel Mayo Rochester

kathleen08

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Re: Newbie looking for advice on decision-making
« Reply #3 on: July 12, 2022, 11:14:26 am »
Hi, Forecast. I am so sorry you have an acoustic neuroma to learn about, when starting a family and so many other things are more naturally front and center. It's a sucky diagnosis, but hopefully it is only a speed bump in life.

I am long time member of the club, frequent reader of posts, but very infrequent poster here. Your story has several things has several similarities and things I can relate to, so I thought I would chime.

When I was 40 (in 2010), and with a newborn baby (my second), my AN was discovered due to balance issues, headaches and a sudden numbness in my cheek. It was large (3.25 cm), growing in the IAC, had some brain stem compression, and I was told by three different AN specialists (Mayo, University of Iowa and House) that it had to come out and there was no chance of hearing preservation. In my case, I opted for trans-lab approach so knew going in that the hearing nerve would be cut to provide the best access to the tumor, and to provide the best chance at preserving the facial nerve, which was a primary goal of surgery.

Fast forward to December 2021, I am now 52 and the [insert really not nice word here] tumor is back and bigger. In December 2021, the tumor was similar size to the original (3cm), surgery was scheduled for April 7 2022 - I could have done it sooner, but staying with the idea of them being slow growing, kids birthdays, first spring break trip since covid, April it was. In mid-March, headaches were persistent, neck pain was constant, and I generally was freaked out that I would go to sleep and not wake up. An MRI in March had my AN at almost 4cm at it's longest point, with significantly increased brain stem compression. Not only was is supposed to be one and done lifetime event, but my tumor was clearly not slow growing, or had a healthy growth spurt.

From 2010 surgery, waking up being SSD, totally removed balance nerve on AN side, and facial paralysis, it was most definitely tough. I was a nursing mom, and that was also tough potentially letting that go (I was able to nurse once off heavy pain meds, but supplement with formula because my supply was not enough). I was back to work five weeks post-op, and able to pick up my baby six weeks post-op.

In the time between 2010 and 2022, my facial paralysis improved quite a bit - it was a very slow process. By 2013 I had total eye closure, some spontaneous blink, had learned to relax my facial muscles and had a small, albeit uneven, grin.

Waking up from surgery in April, I was never nauseous (the first time I puked for 3 days), and my physical recovery was much better. By two weeks post-op, I was walking 2-3 miles a day, and was cleared to go back to work and for all normal activities at 4 weeks post-op. My facial nerve, however, is the sleeper of the story. I have no movement on my AN side yet, my eye only closes about 80% of the way which means constant cornea care. My right side of my face is saggy. Team of doctors is monitoring the nerve healing and muscles, with more surgery in the future a possibility to perform nerve grafts to give my face symmetry, spontaneous movement, etc.

My surgeon (same surgeon both surgeries) said the tumor was very sticky near the brain stem and cerebellum, and the facial nerve (already damaged from the first surgery) was stretched so very thin. If I could go back to 2021, I wish I had been more persistent with finding a source for neck pain and constant sore throats (they both disappeared immediately after the tumor was removed). And when the "wonky head" reappeared in the fall, getting an MRI more quickly. But my dad was in the end stage of metastatic melanoma, and his care took center stage. Surgery sooner than April of this year might have found a smaller tumor, less attached to other things, less damage to my facial nerve.

Learning to live with SSD has definitely been an adjustment. It took me a couple years to learn to advocate for myself (usually just in subtle ways, walking on one side of someone, putting my good ear to conversation, sitting at the end of table or row with the bad ear to nothing rather than a person). But, going into surgery the first time, I actually wondered if things would sound different, like tinny or a bad radio, but they do not. They sound the same. Not being able to sound locate is sometimes a challenge. Family and close friends have realized they can't just say "I'm over here." In your original post, you mention translab + cochlear implant. It is my understanding that translab approach sacrifices the hearing nerve, so even with an intact cochlear or cochlear implant, that would not restore hearing. I know all cases are different, but the hearing solutions I have learned about are all solutions that take sound from the bad side to the good side. The "pieces" of my ear all intact, but the auditory nerve is not.

Knowing what I know today, if I had to choose between SSD and facial paralysis, or give myself a better chance at one being good, I would absolutely choose to have a fully functioning facial nerve and be SSD. I miss the ability to smile. I hate the limits of taking care of my eye - constant lubricant (it is always dry) causes basically monovision, with decreased depth perception and peripheral vision, a goopy eye.

Message me if you want to talk sometime.

~ Kathleen

kathleen08

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Re: Newbie looking for advice on decision-making
« Reply #4 on: July 12, 2022, 12:56:46 pm »
Forecast, one other thing I wanted to comment on. Back in 2010, I also asked why the tumor grew, how long had it been growing, why then. The fellow who was on my case and I talked about how she was doing research about hormones (mostly estrogen I think, but I am not positive). Speculation that there was some connection between female hormones and tumor growth. I had gone through IVF to get pregnant with my second child. Did all of that make a more rapid growth? Of course, since I had never had a MRI previously, there was no answer. The split between men and women who get ANs is close to 50-50, so what I heard is that there may be some connection, but the tumors are not overwhelmingly in females, and no significant link had been discovered as of yet.

alabamajane

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Re: Newbie looking for advice on decision-making
« Reply #5 on: July 13, 2022, 05:58:51 pm »
Just one comment concerning hearing loss and translab surgery and Cochlear implants.

I had translab surgery in 2011. Facial nerve was severed and , yes, it sucks,, but it isn’t the “ end of the world “ ,,, I had a second surgery 4 days after AN surgery to connect my facial nerve to my tongue nerve. The 7-12 anastomoses. So I have some facial movements and eye closure and muscle tone in face. But there are still daily issues for sure.

However,,, I wanted to say that you can get a Cochlear BAHA device for the SSD. I also have one of these. It is from the same company as the Cochlear implant but it is a different device entirely. Many AN users have them.

 The BAHA ( bone anchored hearing device) consists of a stud placed into the skull ( minor surgery) and a separate processor that attaches to it on exterior of the head. The processor comes off ( sleep, shower, swimming etc) but sends hearing signals through the bone ( skull) to the other “ good” ear. It allows you to hear sounds on the deaf side of your head and actually works very well. You do have to have pretty good hearing in your “ good” ear. 

 I just upgraded to the new 6 processor this week ( I started with a 4,, then 5 power) and so far it is wonderful. It will NOT give you “ normal” hearing , nothing will again, and not much help, unfortunately, with locating sound as Kathleen08 mentions. That is one of the most irritating issues of SSD.
Good luck to you,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

kathleen08

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Re: Newbie looking for advice on decision-making
« Reply #6 on: July 14, 2022, 08:14:49 am »
Jane / alabamajane, thanks for clarifying about the BAHA! When someone mentions cochlear device, I think of the traditional "cochlear implant" which does the job of stimulating the auditory nerve. Where the BAHA picks up sound on the SSD side, through the sound processor, titanium post and bone conduction takes the sound to the cochlear and ultimately a working auditory nerve on the working side. It is my understanding with translab surgery the auditory nerve is always (almost always?) cut.

Jane, I really to appreciate hearing your input on the BAHA and upgraded processor. After AN removal surgery the first time, the last thing I wanted was another surgery (even though minor). It's a good reminder to revisit options that are available.

In 12 years, and dealing with an acoustic neuroma twice, I have learned that although there are trade-offs, certainly things I wish were different, often not perfect solutions, but almost everything is workable! Good luck in your journey.

 


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