Big problem the size of a BB

[heylo]

My name is Lora and I'm a 38 year married mom of 2 (Hayes 8 and Olivia 5).  I work part-time as a Neonatal Nurse Pracitioner here in Charleston, SC.  I have been reading this board for a few days and appreciate all the helpful info.  I don't qualify as having a "monster AN"....in fact...it's probally the smallest detectable, but is causing problems. 

My story is that I have been having left side tinnitis since Fall and occasional dizzy spells where I feel woozy...no spinning...just really dizzy.  Went to Internist who wrote off dizziness as dehydration.  Finally went to ENT for L tinnitis and he ordered a hearing test showing Moderate High Freq.and mild spoken word discrimination hearing loss in the L ear.  MRI next day revealed 3mmx4mmx3mm intracanalicular AN in distal IAC of Left Ear.  My ENT says he sees one case of this a year and I'm the lucky one!  He said although it's small....it's just "located in a bad place".  Unsure what to make of that.......

So I'm scheduled to see Dr. Paul Lambert, a Neurotologist at The Medical University of SC on Tues for followup.  In the mean time, have researched online and HIE in LA always noticed as one of the leaders in this; but could not imaging going cross country for treatment and leaving my kids for that long.  I called and left a message requesting referral on East Coast.  Same day, received phone call/message from HEI's Dr. Jose Fayed.  He called next day and left second message...both times providing his cell phone number.  I phoned and left him a message and finally today (Saturday) we talked at length.  Turns out my doc on Tues is a friend of his and trained at HEI...unsure of how many procedures he does though.  Discussed at length my "small problem" and am forwarding him my info, chart copy, test results and MRI copy for review as well.  He stated best case scenario would be the tumor being in the middle of IAC ( mine is defined as "in distal IAC" which I didn't know at the time of our conversation), and the results of an ANG and ABR would provide more evidence as to it's location as far as being anterior (best case) or posterior.  All of these things would provide more info as to how to proceed.  Am most impressed of a doc being so available though.....that just doesn't happen here

SO..although small, I'm symptomatic (tinnitis, dizziness, mod hearing loss high freq, fullness) and OBSESSED with this and the "not knowing".  I don't do well with that.  I'd love to keep as much hearing as possible.... I play piano by ear and love beautiful music/concerts.  And as awful and shallow as it sounds, I am most afraid of my facial appearance changing......talk about wanting to have your cake and eat it too!!!  I'm also concerned with post-treatment/healing seeing as I'm very busy with my 2 kids and with work ( I do x6 24 hour shifts a month taking call from home when not in house and traveling 30 minutes to and from 2 hospitals when paged out with sick babies/consults at all hours of the night).  Also depend on hearing alot in examining babies ie... picking up heart murmurs, breathing and breath sounds with intubations, etc.   

Anway, just wanted to introduce myself since I've been reading post on here for a few days.  I welcome any info/advice that anyone feels would be helpful.  Will update as to my appointment on Tues and the phone consult results with HEI after they see my chart/studies.  Thanks for creating a great sounding board to help people like me who feel like they've been sucker punched and the rug pulled out from under them when life was going just a little too perfect!!!! 
   

[Sue]

Hi Lora,

Welcome to the Forum.  Every single one of us knows exactly how you feel to be given this news.  You feel like you've been run over by a Mac Truck, or are on a runaway train to unknown territory.  It's an awful feeling.  And just like Real Estate, it's all about location, location, location in many instances.  Small ones can cause trouble right away, but sometimes they get huge and the person doesn't have any symptoms. It amazes me that there is such a variety of consequences depending on where they start to grow, and the area that these AN's occupy isn't that big of a place.  Just one of nature's mysteries, I guess.  At least to me.    It sounds like you have things well in hand and that you are on the right path to getting some good advice from various doctors.  There have been other people on here that are in the medical field, including two doctors that I know of.  In fact, one doctor, Sam Rush, found out that his DOG has an AN.  Unbelievable, but true. 

I hope you get some answers soon and  I hope your eventual treatment and recovery go smoothly.  This is pretty much the weirdest ride most of us have ever taken.  Sorry you had to jump on board our speeding train, but we welcome you and I think we should just all head for the Club Car and commiserate over a few drinks.   

Sue in Vancouver, USA

[MAlegant]

Hi Lora and welcome,
Sounds like you are doing all you can to take care of the problem.  And even the doctors understand that facial nerve functionality is not a vanity issue, but a quality of life issue.  We can all relate to what you are going through.  The good news is that most of us do just fine.  Some with post-op issues, some not so much.  And most people heal eventually.  Those that deal with issues on a daily basis are heroic and determined to live life to the fullest.  And we mostly do.  Hang in there and keep posting.
Best,
Marci

[leapyrtwins]

Lora -

welcome to the forum.  I'm sorry your AN is causing so much trouble for you    With ANs size seems to have no relation to "issues".  Some patients have large ANs and very few symptoms; some have tiny ANs and huge symptoms.

First and foremost, I'd like to recommend that you contact the ANA and ask them to send you their informational literature.  IMO you'll find it very helpful in sorting things out and deciding on your course of treatment.  Treatment is a personal choice, and I chose surgery, but if my AN were as small as yours is, I think I'd look into radiation - either GK or CK.

As you research your options further, I'd suggest you talk to doctors who do radiation, doctors who do surgery, and doctors who do both procedures.   You really need a well-rounded opinion on what is best for you in order to make your treatment decision. 

I can relate to your thoughts on HEI.  It has an excellent reputation and the docs there are stellar, but it's just not practical for everyone to go there for treatment.  As a single parent living in Illinois and working full-time to support myself and my children, there was just no way I could have spent the time or the money to go to HEI.  The good news is, I found wonderful, very experienced doctors, about 40 minutes from me.

Good luck and, as Marci said, keep posting.  Don't hesitate to ask us anything - that's one of the things we're here for.

Jan

[Jim Scott]

Lora ~

Hello and welcome!  Thanks for your kind words regarding the site and forums and thanks, too, for posting. 

You seem to be on the right track with your research and doctor consultations, which is not surprising, considering that you're a medical professional.

Your concerns regarding the potential for hearing loss and/or facial paralysis are certainly understandable.  It's hardly vain to want to avoid these problems.  Most AN patients have the exact same concerns.  I did.  At this point, I doubt anyone can guarantee hearing preservation but with a small AN, it may be possible, especially if you haven't suffered much (if any) hearing loss up until now.  Generally speaking, whatever hearing you have in the AN-affected ear should remain after surgery or radiation.  Some hearing loss may occur, but usually not too much.  Unfortunately, the tinnitus is usually not affected and will remain.  It could lessen a bit or possibly increase, but it rarely disappears. 

I'm sorry you have to deal with an acoustic neuroma but I'm pleased you found this website and the forums.  I trust we'll continue to be of help to you, Lora.  We've all experienced the feeling of being, as you put it: 'sucker punched'.  It isn't pleasant but it doesn't have to be scary.  We've all been where you are and we can empathize with your fears, frustrations and concerns.  Please consider the message boards and our members as a resource because when we say: "we know how you feel"....we really do. 

Jim

[sgerrard]

He said although it's small....it's just "located in a bad place".  Unsure what to make of that.......

Hi Lora,

I think he just means that sometimes the small ones can be very pesky about symptoms. 

For a little bitty AN that is causing symptoms, radiation seems a natural choice to me, so I would suggest giving it a good look, along with the other avenues you are investigating. It is less invasive, more likely to preserve hearing, and less likely to cause other problems for that size range. I also think getting the vestibular lab tests (ABR, etc) is a good idea.

Welcome to the forum, please feel free to make yourself at home.

Steve

[JerseyGirl2]

Hi, Lora,

Like all the other posters have said, I'm sorry that you've been diagnosed with an acoustic neuroma ... and I certainly hope that things will go well for you. Your message caught my eye since you live in South Carolina -- my husband's from SC and we both love Charleston!

It sounds as though you're doing all the right research and I'm sure your medical background will come in handy as you continue the process and reach the decision that's best for you. I live in New Jersey and went to House Ear for my surgery last January -- I would go back there in an instant and will always be grateful for the wonderful doctors and amazing care I received there. That being said, I'm sure you know from this forum that other ANer's are passionate about the doctors and treatment they've encountered at a wide range of facilities throughout the country. The important thing is to feel confident with your decision -- whether it's surgery, radiation, or "wait and watch."

You make a very salient point when you mention that you're unsure of how many AN procedures have been performed by the local doctor you're seeing next week. I think everyone on this forum would agree that one of the major considerations in the decision-making process is the selection of a team that's very, very experienced with acoustic neuroma treatment.

Best wishes as you continue the journey,

Catherine (JerseyGirl2)

[Keeping Up]

My ENT says he sees one case of this a year and I'm the lucky one!  He said although it's small....it's just "located in a bad place".  Unsure what to make of that.......


   

I will put in my 2 cents - I am a newbie and Canadian, so likely even worth less!

It think the above refers to the nature of schwan cell tumors - as I understand it, the cells/tumors aren't dangerous at all - they just get dangerous because they are located in the inner ear, close to the brain stem and squeezing out some rather valuable nerves.   

My scenario seems very similar - I am 37 years old, a mom of 4 little ones (my eldest is 6 - yikes!) and a working mom.  I was diagnosed in early December with a tiny little sucker - 5mm x 8mm - all IAC (which is key) with mild hearing loss and tinnitus (and well fullness = 'airplane ear' - got a good dose of that) as my only symptoms (so no dizziness - I was dizzy in November around the diagnosis but I subsequently think it was either anxiety on my part or the new birth control - no 'drive for five' in this household!)  I am with a group of doctors that, while they leave the option to the patient, strongly encourage watch & wait if the symptoms aren't that bad (aside from hearing loss or tinnitus) with small IAC tumors.  So, I am waiting the 6 months until May for my next MRI to see what the sucker has done.  If it doesn't grow, I will continue to watch and research.  I will be referred eventually to a radiation oncologist for Gamma Knife consult (probably four months or so) and even longer term for a neurosurgeon consult (it is being done now, but my ENT said I wouldn't likely see the doctor until late in the year - no fast turn around here for the low/no risk cases which is where I sit right now!)

From what I have been told and while I am hopeful, I am not confident the prognosis of hearing preservation despite having very good hearing and word recognition scores and regardless of the treatment option over the next 5-10 years.  Jim - your words offer more encouragement.  MY ENT explained that all options don't offer much of useful hearing (but some options definitely offer some hearing versus SSD). As a baseline (and terminology I am quickly learning about) - hearing better than 30db/70% word recognition.

I actually am a spitfire of energy (what mother of 4 isn't??) and not at all letting this sucker slow me down or discourage me - so please don't read this as negative.  I am tickled pink I mightn't have to make a decision on treatment for several years.  I will have 'deficits' (i.e hearing loss) but heck as things come, a small AN is pretty easy peasy for me.  I will be ready for a decision when the time comes, but waiting for now fits me just fine.


Good luck this week - it is mind boggling how much I have learned about cranial nerves, audiograms, the 50/50 rule, the 70/30 rule, gamma knife, surgery and it goes on and on. 

Can't wait to read what you learn.

[Kaybo]

Lora~
I don't have much else to add - just wanted to say a big 'ole welcome from Texas!!  I am a 38 and the mother of three girlies so I know where you are coming from.  Even though I had my AN surgery 13 years ago (& no babies yet), I had a surgery to help regain some facial movement (T3) last spring and went all the way to Baltimore to get it.  At the time, that was the only place to go but it sure was hard leaving my girls (10, 6 & 5 then)!!  I have had SSD for 13 years now and I have learned to adjust - partly b/c there were really no other options THEN!  I even can listen to the girls & always tell if they are starting (very beginning) to have breathing problems - our Dr. has even commented on my ability to "hear" the early, early signs so well.  I know this is nothing in comparison to what you do every day, but I'm just saying that you will still be able to do your job.  AND there are many devices that are available to help now too.  Please PM me with your number if you would like to chat.  Also, check out my blog (address below) if you would like to see what life is like for me 13 years later!

K

[Dawn]

Hi Lora.

welcome to the forum, I am a new member myself, diagnosed in early December with a small AN, just a little bigger than yours and also in the IAC.  I have had consultation with 2 Neurosurgeons/ENT's.  I just yesterday sent all my information out to the House Clinic in LA and am waiting my phone call for the consult.  I am scheduling one other opinion after that with another Doctor in NYC...Dr. Post

after all the consults, I am scheduled for follow up MRI in March and I too will then  make decision.  I am kind of obsessed with it too but some days are better than others.

All I can say is any questions you have....post them...guaranteed someone here will have experienced it as well and will offer you helpful information.

Its great how everyone helps out here!!!
Good luck to you

Dawn

[dizzyinca]

I was in a similar situation 6 months ago, new small, intracanicular, symptomatic tumor.  I am married, 35 years old, have 3 & 5 year olds, and worked FT in a hospital as an occupational therapist (which requires lifting and balance).  I quickly sought out 2 surgical opinions and went with the one the was able to give me options.  I chose the surgery based on minimizing equiliibrium complications.  I went and had Lasik prior to surgery, since I was extremely near sighted.  I had to travel out of the area for treatment/surgeries, and my parent/in-laws moved in shifts (from out of the area) for about 3 months so that my little guys had some consistency.  In California, my spouse was able to take paid family leave intermittently for 6 weeks so that he could accompany me to appointments/surgery.  Good luck.  I remember wanting the "wart" out immediately when I was shown the small culprit on the MRI, since it was impacting every aspect of my life.  I am now looking at return to work with a few accomodations (limited lifting and reduced work hours).  There is light through that tunnel...and some silver linings (that I laugh at every now and then).   

[heylo]

UPDATE:
Saw Neurotologist at MUSC last Tues...very nice and trained at House.  Said he'd have no issue what-so-ever referring to House...but feels they do a good job too!  Whereas HIE do about 5/week, he did 1 and saw 2 others.....we'll see.  When asked what he'd rec. to a family member with my scenario....he thought about it and then said "he'd rec to wait and watch but could be swayed either way". 
I had spoken with Dr. Fayed at HIE the Sat before my appt here...very nice guy and talked about an hour.  He had given me best case scenarios for surgery....AN in mid IAC and on superior vestibular nerve.  He got my MRI and info I sent to him this  past Sat and called to tell me mine appears "impacted in distal 1/3 and appears to be coming off the inferior vestibular".  He then began to rattle off a number of tests (ENG, ABR and another ....began with a V?) that he wants me to have done.  Says if they can see "a mm between the tumor and cochlea that still could attempt preservation surgery".  This worries me more not even for hearing but also for facial nerve preservation seeing as they'd have to remove it from the underside of the nerve...less accessible.  The Neuro Board at HIE meets on Tues and he stated he would call me back after they meet tues.  SO....until then, I'm freaked but putting on a normal happy face, and my sweet Internist whom I called this past week as I thought I was driving myself crazy with this gave me a prescription Lorazapan which has helped a non pill-taker to feel a little less freaked. 
So thank you to all who have responded and the offers to send personal mail for more info.  I am overwhelmed at the kindness of everyone I've come in contact with thus far in regards to this.  Thanks again and I'll keep you updated as to my findings on Tues!

[leapyrtwins]

Lora -

thanks for the update.  Please do let us know what the docs @ HEI say on Tuesday.

BTW, it's perfectly normal to feel freaked out by an acoustic neuroma diagnosis; I know I was 

Take care,

Jan

[sgerrard]

This worries me more not even for hearing but also for facial nerve preservation seeing as they'd have to remove it from the underside of the nerve...less accessible. 

Don't quote me on it, but I believe that the facial nerve is on its own little ledge on the side of the IAC, and is out of the way until you get up to the opening of the IAC into the CP angle (the end I believe they call the fundus). It is there that the sticking of the AN to the facial nerve gives the most problem, so you are probably okay on that score.

The "V" test you mentioned is most likely VEMP. See this link if you really want to know: http://www.dizziness-and-balance.com/testing/vemp.html. I am a fan of having vestibular testing, it seems to me it can't hurt to gather more information, and sometimes it reveals useful things for the doctor to know.

Steve

[Dawn]

Hi

I have been reading the posts here and I also spoke to Dr. Joe Fayad from House on Saturday and was told pretty much the same thing...I have a small tumor and is also going to review it tomorrow and get back to me Tuesday that they were going to review it and see exactly what position the tumor is in.  From what he said so far he is thinking they can do the Mid Fossa surgery and retain about 70-75% of my hearing.  Hopefully when he calls back tomorrow he will have good news for me.  Then it will be finding a doctor in NY/NJ area that performs the MF procedure.

Please keep me posted on how your consult goes tomorrow, hopefully we will both get some good news

Dawn