Author Topic: What a way to finally find out.  (Read 4278 times)

Christine

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What a way to finally find out.
« on: December 04, 2007, 10:40:30 am »
Hi, My name is Christine and I had an AN removed in Aug of this year after being misdiagnosed for 10 years. In 1997 I awoke with a ringing in my left ear. It was driving me nuts, then the phone rang and I answered it. But, could not hear anyone respond, this happened 3 times before I switched the phone to the other ear and my sister wanted to know what the heck was going on as I kept saying "hello...hello" then hanging up. Come to find out I could not hear her when I put the phone on my left ear. I called my doctor who sent me to the ENT who was treating my sinuses issue. I saw him 2 days after the ringing started he did a hearing test and found a 20% loss of hearing. He placed me on steroids for a membrane issue and ordered a follow up hearing test in 1 month. I had the follow up visit and he stated that it was a little lower and ordered another follow up in 2 months. I went to the next visit and he advised me that I had a ruptured membrane in my left ear. That there was no surgery to correct it, I was not a candidate for a hearing aid, I did not require any follow up hearing test, and the ringing would go away. The ringing went away I thought, but really you just get use to it.

Over the years I continued to see him for my sinuses and my normal comment to "how are you today" was "great I can't hear and I can't breathe". He never requested a hearing test no matter how many times I responded with that comment. In 2003 he performed surgery for a deviated septum which never fixed my breathing issue. He stated that even after the surgery I had non-allergic rhinitis that there was nothing but nasal inhalers for that.

I continued to have hearing and breathing issues. Saying "excuse me", "can you please repeat that" until this year. I was awakened by a bird outside of my window and turned over on my good ear (right ear). I could not hear the bird at all from my left ear. In the past I could just not as clear. I called the doctor for a hearing test and a recheck on my sinuses. When I saw him he states that I need to stop taking my nasal inhaler that I did not have non-allergic rhinitis and there were no issues with my septum. That I had weakened cartilage in my nose and they need to take cartilage from my ear and graph it into my nose to fix it. That he would discuss it more after my hearing test. I have the test and they found a 65% hearing loss. That audiologist stated "I have nothing to compare it to as your last hearing test was in 1997". I stated to her " Dr. Bartel's stated that I did not require follow up hearing test", she stated "I see that". Anyway she stated that a hearing aid would help which she tested and I noticed that WOW I can hear. I go back to the room and wait for the doctor and he states that he needs to do an MRI to rule out a tumor. That it was just procedure and as I had a ruptured membrane it was not an issue.

I have the MRI and hear nothing from him in a week and a half. Then while driving home from work he calls me. Tells me I have a tumor, that these are always benign and slow growing. That as long as I see the ear surgeon within a month it will be fine. I was not prepared with questions as I was on the highway and in shock. I go home and start looking up tumors of the ear and find what seems to be the tumor that he was describing. The next day I call him and ask questions. He confirms that I have an AN, but it was really small and slow growing so it was okay if I waited no longer then a month to see the surgeon. I told him that I read that it can affect the facial nerve. He stated "it can but yours is so small it would not be affecting that" at this I told him that for approx 1 month I have been having a twitch on the left side under my eye. That I scheduled an eye exam but felt that this was not an eye issue and was related to the tumor as it was only on the left side. He now was more concerned and made it more urgent for me to see the surgeon. Funny thing as soon as he told me it was a tumor I heard the ringing I was ignoring for the last 10 years. No wonder why I said huh? excuse me? etc all those years. I told him I was hearing the ringing again to which he says "it never went away?"

Long story short both the ENT surgeon and the Nero surgeon asked "You never had a scan" and my response was "NO" not until this year. The ENT surgeon stated we cannot save your hearing, that the main concern was my facial nerve. I was not a candidate for watch and wait. That my tumor was consistent with a tumor that has been growing for 10 years. My tumor was out of the ear canal and into the space below the brain. It was attached to my facial nerve. During the surgery they could not remove it all from my facial nerve and had to leave a small piece. Removing it would have caused facial paralysis. They had to remove my left inner ear in the 10 hour long surgery. I have balance issues, eye issues (see double looking to the left), I bite the left side of my lip all the time, I do not produce tears in my left eye,  issues driving and I work 45 miles from home, and now headaches.

Will this get better……………………
Misdiagnosed in 1997 by my ENT
AN found June 2007

Translab August 14, 2007
Dartmouth-Hitchcock medical Center, Lebanon NH.
Dr. Kadir Erkmen & Dr. Daniel H. Morrison

Inner ear removed on left, small portion of AN remains on Facial nerve. Dissiness, headaches, facial issues, dry eye.

lori67

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Re: What a way to finally find out.
« Reply #1 on: December 04, 2007, 11:23:55 am »
Hi Christine.  Sounds like you've really been through a lot!

Your story sounds similar to mine - being treated for sinus issues for years with no relief and then finding out I had this AN growing in my head for about 14 years.  At least now we know we weren't crazy, right?

Your surgery was pretty recently, so you still have a way to go in your recovery.  I had mine in February and things DO get better - we just have to force ourselves to be patient and let our bodies recover when they are good and ready to.  This is the first time I've been patient in my life!!  I have had the eye issues, the biting of my bottom lip thing, having to drink through a straw.. you name it - all the usuals.  I really didn't see any improvement in my facial function until about 7 or 8 months after surgery.  Everyone is different though - some people got function back in a few weeks, some haven't gotten it back at all.  I have been going to PT about once a month, not for balance issues, but for facial therapy.  It's been helping a lot.  Not that you can really exercise your face, but we do biofeedback and work on exercises I do at home to try to get the correct muscles working again.  At the moment, if I try really hard to close my eye, my upper lip moves (it's called synkinesis), so we're trying to fix that.  If you are having balance issues, you might want to try some vestibular therapy - or walking - that helps a lot too.

I'm sorry you've had to deal with all the things that seem to go wrong after they fix one thing!  And I'm sorry your doctor was so rude as to tell you over the phone what your diagnosis was.  Geez, he should be slapped in the head for that.

Now to make my long story short - things do eventually get better.  Just hang in there and know that a 10 hour surgery is bound to take a while to recover from.  Give yourself the time you need!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Christine

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Re: What a way to finally find out.
« Reply #2 on: December 04, 2007, 11:59:58 am »
Funny huh? People say "you must feel alot better now that the tumor was removed". I tell them I felt better before. Before it was just that I bad hearing nothing else. Now I have all the other symptoms and no hearing at all on one side. I changed my ENT as he just did not do right by me. And they are going to fix my nose for real this time. It was broken in a car accident in 1989 which stated my sinsus problems. My reg doctor said it needed to be broken and reset back in 1995 but my ENT said it was a deviated septum. After all these years, septum surgery, I find out my reg doctor was right all along.

I'm one of those people that can't sit still. After being in ICU for 4 days I wanted up and wanted to walk. First with a cane then slowly around the house. I walk all over the house I get tipsy at times. I find that if I walk around the mall the balance issue is not as good. But, it is getting better. I'm working from home at the moment as the 45 mile drive is a lot with the eye issues....lol...after surgery I was seeing double so after 2 weeks I started knitting a sweater, ripped it apart so many times I almost gave up. Figured if I forced myself to focus that would help and it did. My nero surgeron laughed at how I did my home eye therapy but was glad to see it helped my vision.

Thanks for letting me know it gets better :)
Misdiagnosed in 1997 by my ENT
AN found June 2007

Translab August 14, 2007
Dartmouth-Hitchcock medical Center, Lebanon NH.
Dr. Kadir Erkmen & Dr. Daniel H. Morrison

Inner ear removed on left, small portion of AN remains on Facial nerve. Dissiness, headaches, facial issues, dry eye.

Gennysmom

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Re: What a way to finally find out.
« Reply #3 on: December 04, 2007, 03:00:39 pm »
Christine,

It does get better, it just takes a while.  I went back to work 2 months after surgery, and it's been rough there since.  I am just about at the 1 1/2 year mark, and have been told that you really start feeling good between there and 2 years.  I have to say, this last month I've really felt like I'm coming out of it.   I know that seems forever from now, and there were some hard bits, but ride it out (not like you have a choice, but...)  it WILL get better.  Keep reading the site, there's lots of helpful hints on how to cope with the day to day crap.  Luckily I have transit to work, as I'm still not liking driving yet, but if I had no choice I could do it. 

Hang in there!!!!

Kathleen
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Omaschwannoma

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Re: What a way to finally find out.
« Reply #4 on: December 05, 2007, 01:25:39 pm »
Hi Christine,

Wow, your story sounds vaguely familiar as it took 15 years from onset of first symptom for me and many, many so called specialists.  It wasn't until my hearing took a complete nose dive that anyone sat up and took notice!  Sorry you too had much too long before an answer.

I will say same as Gennysmom, it truly takes time, diligence with vestibular rehab exercises, eyes closed for 5 to 10 minutes during the course of the day helps alot and of course, learning how far you can push yourself before too much fatigue.  It's a learning process that does change.  Once you get used to your limitations it changes again all for the good.  Stick around here and check in from time to time with other questions you may have.  Welcome?!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Pembo

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Re: What a way to finally find out.
« Reply #5 on: December 05, 2007, 01:58:45 pm »
I hate the words "be patient" but unfortunately that is what AN recovery is all about.  Your post surgery symptoms will decrease, people saying stupid things-won't. :)

Glad you found us and we can all relate.....
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

marg

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Re: What a way to finally find out.
« Reply #6 on: December 05, 2007, 10:18:14 pm »
Christine,
     What a wild ride you have had.  That ENT should be reported !   >:( .  Your doctor should have at least granted you the hearing test to find out what was wrong
     .... Last December when I had a hearing test and the audiologist told the doctor that my hearing loss was nerve related (and it was a slight loss) he immediately had me scheduled for an MRI and told me I had  'a slight chance of a BENIGN brain tumor called an Acoustic Neuroma'.    Well, as it turned out I was one of the:  " 1 in 100,000 who get this"  and as you can read below you can see my recovery condition.
         Christine - the past is past and things will get better - than they are right now.  I had to realize that I have a new 'normal' now..... things will never be exactly the same way as they were for me before surgery -  and dealing with that is a process - some days better than others.  I don't know how long it has been for you since surgery ( for me it is almost 7 months) and I am not a patient person either - but hang in there.  We are here for you.
Margaret
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

4cm in Pacific Northwest

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Re: What a way to finally find out.
« Reply #7 on: December 05, 2007, 10:58:54 pm »

Christine,

Sorry for the reasons you have joined us but welcome.

You and I both had surgery in August.

Quoting you
Will this get better?

Yes it will…

Leaving tumor next to the facial nerve was a good choice by your surgeons, Hopefully the acoustic nerve was the source and the tumor will not re-grow. Dry eye is part of the facial nerve and typically this improved with time.

Re
"...eye issues (see double looking to the left) ..."

This is not from the facial never but from the optic nerve. Remember that the “E� in ENT does not stand for eye. Make an appointment to see an ophthalmologist… if this has not resolved here at our 3 month bench mark this needs to be attended to (mine corrected at around week #4 post-op). There are things that can be done to improve this.

Re
"I do not produce tears in my left eye "
Do you have an eye weight- inserted or a stuck-on temporarily with double-sided-sticky tape? I ask as this made a huge difference to my dry eye. When I have the weight on I hardly need the drops. Also did they show you how to tape under the eye to keep your tears in? (Taping the eye shut is old school and I would not recommend this as you can scratch the cornea). Extensive time at the computer will dry your eye out too- at this stage.

RE
" I have balance issues"
Walking daily (now hiking) and playing on my Pilates ball have helped me tremendously... with balance. The key is to get up and exercise 20 minutes (min) per day. Also your double vision will affect this. I wore an eye-patch until we sorted my eye issues out…

Here are some resources I recommend you read that are available through he ANA here.

https://secure.baxinternet.com/~anausa/for_sale.html


The Facial Nerve and Acoustic Neuroma: Possible Damage and Rehabilitation (AN4)
Tips and information for patients who have facial weakness or paralysis after treatment for acoustic neuroma. Includes an explanation of the facial grading system and some exercises that can be performed at home to improve facial tone.

Eye Care After Acoustic Neuroma Surgery (AN6)
Details on caring for eye problems caused by facial weakness following acoustic neuroma treatment. Includes information on corrective procedures and patient-maintained eye care.


Improving Balance Following Treatment for Acoustic Neuroma (AN8)
Explains the causes of balance disturbance and offers exercises that patients can perform with the goal of improving balance function.


There are some great people on this forum that certainly keep my spirits up.

Improvement does happen!

Keep moving forward.

4

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

marg

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Re: What a way to finally find out.
« Reply #8 on: December 07, 2007, 12:46:25 am »
4 I sure am glad that we have you in the research dept.... you are a great source lady... for all of us. ;)
Margaret
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

Christine

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Re: What a way to finally find out.
« Reply #9 on: December 20, 2007, 08:59:30 pm »
Re
"...eye issues (see double looking to the left) ..."

This is not from the facial never but from the optic nerve. Remember that the “E� in ENT does not stand for eye. Make an appointment to see an ophthalmologist… if this has not resolved here at our 3 month bench mark this needs to be attended to (mine corrected at around week #4 post-op). There are things that can be done to improve this.

It has been 4 months since surgery and same issue. My opthalmologist stated that my double vision looking to the left is because my left eye does not travel as far to the left, causing the double vision. It is from the tumor. :(

Re
"I do not produce tears in my left eye "
Do you have an eye weight- inserted or a stuck-on temporarily with double-sided-sticky tape? I ask as this made a huge difference to my dry eye. When I have the weight on I hardly need the drops. Also did they show you how to tape under the eye to keep your tears in? (Taping the eye shut is old school and I would not recommend this as you can scratch the cornea). Extensive time at the computer will dry your eye out too- at this stage.

I don't have an eye weight, the nero surgeon stated that if this did not improve they would send me to theraphy. Who gives you an eye weight the eye doctor, the ENT, or the nero surgeon? I'm so in the dark no one told me about these side effects before or after surgery. All I knew was that they had to remove the inner ear and I might have balance issues :( Problem is that I am a network support engineer and I work on the computer and phone all the time so need to figure out how to make this a little better.

RE
" I have balance issues"
Walking daily (now hiking) and playing on my Pilates ball have helped me tremendously... with balance. The key is to get up and exercise 20 minutes (min) per day. Also your double vision will affect this. I wore an eye-patch until we sorted my eye issues out…

I know what you mean I tend to close one eye alot. I walk but I find that walking in malls, or outside make the balance issue worse why is that? Is it because I have more to look at :).


Thanks for the links I will make sure to read them, I have been reading alot lately.
Misdiagnosed in 1997 by my ENT
AN found June 2007

Translab August 14, 2007
Dartmouth-Hitchcock medical Center, Lebanon NH.
Dr. Kadir Erkmen & Dr. Daniel H. Morrison

Inner ear removed on left, small portion of AN remains on Facial nerve. Dissiness, headaches, facial issues, dry eye.

Christine

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Re: What a way to finally find out.
« Reply #10 on: December 20, 2007, 09:16:24 pm »
That ENT should be reported !   >:( .  Your doctor should have at least granted you the hearing test to find out what was wrong
   

Guess the thing that kills me is that 10 years ago, 1997,  he stated that it was a ruptured membrane and that there was nothing they could do to fix it. I saw him 2 days after the ringing and the sudden hearing loss started, he did 3 test over 3 months which showed decreases each time. Over the years I continued to see him and he would always say how are you and my response was "great I can't hear and I can't breath". Never once since 1997  did he do another hearing test, no scans, nothing. To a person with a hearing loss you don't realize how much it decreases over the years. You are so use to it, so use to saying "huh?". It becomes a fact of life. When you are an active patient of an ENT he should perform the required test, and not assume.

I pulled all my records and provided them to someone for review. He did not cause the tumor, but he failed to perform the proper test. It was dumb luck that this was even found this year. I requested the test as I could not hear a bird chirping that was driving my good ear nuts. If I didn't do that I could of just not awoke one morning.

Thing is that he also messed up my sinsus. After he fixed a deviated septum in 2003 he is now telling me that I need cartlidge removed from my ear to graph into my nose as it is weakened. I think not. Per the MRI that they did for the AN, which he saw, my nose needs to be broken and reset as my reg doctor stated in 1995. But, my reg doctor sent me to the ENT and he told me that it was a deviated septum. This ENT is one of the best in the area...laughing at that one.

Sorry to rant, but your right someone should make sure that he doesn't do this to someone else.
Misdiagnosed in 1997 by my ENT
AN found June 2007

Translab August 14, 2007
Dartmouth-Hitchcock medical Center, Lebanon NH.
Dr. Kadir Erkmen & Dr. Daniel H. Morrison

Inner ear removed on left, small portion of AN remains on Facial nerve. Dissiness, headaches, facial issues, dry eye.

4cm in Pacific Northwest

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Re: What a way to finally find out.
« Reply #11 on: December 20, 2007, 09:37:12 pm »
Hugs to you Christine … you do sound frustrated.

I am swamped at least until Monday. Even before surgery being Santa was always a busy stress time… currently I am more challenged… hey-  but I am  still doing it…

I will try to get back to you on your excellent questions when things ease up a bit here on my home front

You wrote “network support engineerâ€?. I always tell techno keen students that the word GEEK is just a positive acronym for Good Electrical Engineer Keener   ;) :D  ::) … and not to take any notice of people who tease them …as the rest of the world is just jealous of their abilities. Hats off to you!

The reindeer need feeding and the sleigh is on overload – I’ll touch in with some links when I can… later

Ho Ho Ho … I gotta go!

4

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Christine

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Re: What a way to finally find out.
« Reply #12 on: December 20, 2007, 10:06:35 pm »
Hi 4, thanks.

I like that acronym I worked hard to get that job title. I was a high school drop out at 16, married at 18, 3 kids by 28, at 35 went back to school, and became a Network Support Engineer. And I love being a GEEK at 47 :) .

I know what you mean about busy holidays. I have 4 sisters and 4 brothers so you can imagine what my house will be like on Monday evening. My sisters always have the chair stuck to their butts, the kids are always running and making way to much noise....lol...good thing I have 3 daughters. They can't cook but they have helping hands. A typical Christmas Eve is 30 people for me, Thanksgiving was hard with the one sided hearing.....but sometimes it can be a blessing when you want to tune someone out :)

Thanks for all the help on my long list of questions. Hope you have a great Christmas and that we all have a fantistic New Year!!

OH!!! Don't over feed those reindeer don't want them crashing through my roof when they get to my house.
Misdiagnosed in 1997 by my ENT
AN found June 2007

Translab August 14, 2007
Dartmouth-Hitchcock medical Center, Lebanon NH.
Dr. Kadir Erkmen & Dr. Daniel H. Morrison

Inner ear removed on left, small portion of AN remains on Facial nerve. Dissiness, headaches, facial issues, dry eye.