Author Topic: Hello -- back again  (Read 9022 times)

pfmarquez

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Hello -- back again
« on: March 14, 2011, 10:46:50 pm »
Where do I start....I'm back on the site reading posts and completely anxious and nervous.  In 1998, at the ripe age of 23, I was diagnosed with an acoustic schwanomma on my right side.  The tumor was approximately 3 cm, and the choice was made to remove it by surgery.  The surgical approach removed all the inner ear, and unfortunately, the facial nerve was severed as the tumor was growing from it.  Since, I've gotten married and have two beautiful and healthy children.  I was living my life, with my slight facial paralysis, but with no balance issues, tinnitus, or headaches.  I felt the surgery was a success and sometimes question myself if the gamma knife would have restored my smile.  Those are small things to worry about and I seemed content.  I've had follow-up MRIs every 5 years with clean results. 

A year ago, for the first time, I felt some auditory issues with my "good" ear.  I was going through a cold and was given decongestants and antibiotics along with earwax removal.  The issues went away within a few days and my hearing returned to normal.  Here I am a year later, and these auditory issues have returned.  My ear feels full and seems as if I'm in an auditorium with a motorcycle humming in the background.  I did the ear wax irrigation on my own, and did the nasal decongestant, but its not going away yet.  Its been 5 days or so.  I went to an urgent clinic to look at the ear hoping there was more ear wax, but it was clear.  The General Med doc said the ear drum was flat and suggested I had fluid build up - gave me a Z-pak and requested I follow up with an ENT.  I'm on day 2 of the Z-pak and not noticing any results.  I have some popping when I swallow at times, and maybe thats a good sign that it is just fluid built up in the eustachian tubes.

I can't help to think I may have another AN in my "good" ear and the possibility of being deaf or having NF2.  This forum helped me so much a decade or so ago, I regret not checking back and continuing to share my story of success.  My last MRI was about 3 yrs ago, so if there is one, it hasn't been growing long.  I need to get a CT or MRI to have some relief.  I do recall a situation, now, a few months back sitting in a restaurant bathroom playing on my cell, and having a dizzy spell where I thought the room was turning upside down.  I initially thought it was maybe the tile set-up causing some confusion with my vision.  I was able to leave with no other symptoms and balance did not seem to affect me after that. 

I just lost my father yesterday and this stress is adding to that one.  I just feel like something isn't right.  I pray that it is everything going on around me and my ears need to drain which could take more than a week?

I'm extremely worried about the possibilities and going down that road again with a rougher patch.  Can anyone tell me if they have had any issues with their "good" ear or recall similar symptoms in their AN ear prior to any procedures?  I'm trying to get into the ENT, but have been pushing it off due to my circumstances.  I need to get this addressed quickly, and unfortunately, this process is anything but quick.

Totally appreciate the feedback.

Thanks,

Pablo

kenneth_k

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Re: Hello -- back again
« Reply #1 on: March 14, 2011, 11:40:53 pm »
Hi Pablo.

Welcome back. Sorry to hear you feel in distress. I hope you can get looked at soon.

There are a lot of conditions that can affect balance and hearing. Virus, a cold, stress, BPPV etc.

Try and relax and tell yourself, while you are waiting, that yes - you need to get it looked at, and yes - it's OK to be anxious - but the odds that you have another AN show up 13 years after the original surgery in the other ear are really, really low.

It is perfectly normal that we register every little sensation because we have been trough a lot.

Best regards, Kenneth

pfmarquez

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Re: Hello -- back again
« Reply #2 on: March 15, 2011, 12:32:47 am »
Thanks for the reply Ken - it appears you've been through a lot in the last few years.  I never looked at the statistics of having a second AN, sure they are low, but I won't be at ease until I know for sure.  BTW, I've had hearing tests each year (and last time this happened) with no setbacks.  I hear fine right now, just muffled.  Its comparable to listening to a stereo with blown out speakers.  Thanks again for the reply it helped.

sunfish

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Re: Hello -- back again
« Reply #3 on: March 15, 2011, 04:44:52 am »
Very sorry about the loss of your father.  Lots of stress in your life right now, so just take it one day at a time.  Hopefully, you'll get an appointment with the ENT, who can figure out what's going on with you.  It is positive that you had the "clean" MRI a few years ago.  You're right - all this stuff is not quick, and tends to be ongoing.  Now that I have significant hearing loss on the AN side, I also worry about my good ear more.  Take care, and let us know what you find out!
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

Kaybo

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Re: Hello -- back again
« Reply #4 on: March 15, 2011, 08:01:44 am »
Pablo-
My condolences for your loss - I know how hard it is to lose a parent as I lost my father to Alzheimer's a few years ago. I had surgery in 1995 when I was 25...our stories sound amazingly similar!  There have been times over the years where I was almost certain my tumor was growing back; however, I was experiencing headaches, not ear problems. I hope that everything works out and there's an "easy" solution to all of this.
You & your family will be in my prayers...

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

moe

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Re: Hello -- back again
« Reply #5 on: March 15, 2011, 09:07:07 am »
Pablo,
I'm sorry to hear of your symptoms which are causing you concern, along with the passing of your father.

Hopefully nothing more than allergies causing your symptoms, (spring is coming....)so hang in there and see what the doctor says. Hopefully you can get an MRI to rule out anything. I understand the fear of getting an AN in the non AN ear. I definitely am more aware of what is going on in my "good"ear.  Your MRIs have been clear all these years, so you are on the ball by continuing to be alert to your symptoms and getting the MRI's.

Have a nice day now and prayers for peace to you and your family in your time of grief.
Maureeen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

pfmarquez

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Re: Hello -- back again
« Reply #6 on: March 15, 2011, 09:26:48 am »
Thanks for the kind words all - I have a question to see if anybody has ever gotten a CT scan and whether anything would show up on that type of format.  I go see the ENT today.  I called to get an appt with the ENT that performed my surgery - its been quite some time since I've been back to see him (he used to be out of network for my insurance).  Anyway, they said the earliest they could fit me in was June - seriously?

Brewers7

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Re: Hello -- back again
« Reply #7 on: March 15, 2011, 10:14:39 am »
We all understand your concerns.  It is my understanding, however, that at this stage, your odds of having an AN would be roughly the same as anyone else - 1-2 out of 100,000.  Ask your ENT.  God bless you.  Susan
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

CHD63

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Re: Hello -- back again
« Reply #8 on: March 15, 2011, 11:29:16 am »
Hi Pablo and welcome back to the forum .....

When they say having an AN is a life-changing experience, I guess that includes always knowing it was there ..... and along with that, the fear of regrowth or another tumor.  So sorry you are having stuffy ear issues now.  Hopefully there will be a very treatable answer.

Re:  CT scan to show ANs ..... although the standard for diagnosing ANs is an MRI with contrast (especially very small ones), some people cannot have MRIs so it is my non-medically trained understanding is that larger ANs can be seen with CT scans.  Check with a doctor familiar with ANs on this.

Let us know what you find out.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Hello -- back again
« Reply #9 on: March 15, 2011, 01:43:05 pm »
Hi, Pablo and welcome back ~

My condolences on the death of your father. 

I'm sorry to learn about these ear issues you're experiencing.  Being a former AN patient, your concerns are understandable.  It would be inane to advise you not to worry but, in my experience, I only really start to worry when a (physical) problem has been medically confirmed.

Because all the good advice has already been offered I'll simply wish you well and hope that the CT scan doesn't show a tumor.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

pfmarquez

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Re: Hello -- back again
« Reply #10 on: March 15, 2011, 04:46:42 pm »
Thank you for all the replies -- truly from the bottom of my heart.  Its been such a difficult few days dealing with funeral arrangements and on top of it all...this ear issue.  I got in to see the ENT today and they performed a hearing test which showed some hearing deficiencies (unfortunately). No ear wax or fluid was noticed.  Its a lot to process at this time...especially now.  He suggested I do an ABI test and something else to test for Meniere's and an auditory tumor.  I would feel much better just getting the MRI over with.  I called my General Med doctor to see if he can order me one since I have done one for every five years for the past decade, but they want me to see him, and he's out of the office until next week.  So, at this point, I will plead with the ENT to just bypass any tests and get an MRI, otherwise, I go for those tests next Tuesday. 

I can't imagine the possibility of being 100% deaf or going through another surgery.  My first one was like 12-13 hours!  I am extremely worried and anxious and already in deep grief....

Is there any history of auditory nerve preservation, or facial/balance nerve preservation with any of these tumors?  I have never felt any balance issues, but only have the one nerve left at this point.

Thanks in advance for any information I can get.

BostonBill

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Re: Hello -- back again
« Reply #11 on: March 15, 2011, 05:00:27 pm »
Pablo,
I am sorry to read about your current issues. I would suggest you try and be positive until you can get your MRI. From what I have read it is extremly rare to have AN at each ear. Be positive! You will be ok!
Bill
Diagnosed Dec 21, 2010, 1.75 x 1.75cm plan is for retrosigmoid removal scheduled for June 15th at MGH by Dr Barker & Dr Lee. Putting off so I may enjoy my sons senior year varsity hockey, lacrosse seasons and graduation. That and our annual trip to Cancun in May.

pfmarquez

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Re: Hello -- back again
« Reply #12 on: March 21, 2011, 09:58:26 am »
MRI scheduled for today -- ABR test tomorrow.  How quickly can you get an MRI report, and will the hospital give you a copy of the one page summary?  I have been living with a ton of anxiety and stress lately, with no relief of symptoms -- its been 13 days.   

After reading over possible ear issues this past weekend, I had the ENT on call prescribe me some steroids.  I am taking some Prednisone 20mg 2X daily for 5 days, and tapering off from there.  I figured it couldn't hurt...does anyone know if taking steroids can have any negative effect on what I'm experiencing in my ear?  I also wonder whey the ENT didn't put me on it from the get go.  Has anybody read posts of ear issues that did not end up being a result of an AN (specifically hearing loss)? 

Last week I began to contact the surgeon -- Thedinger, (I live in KC, MO btw) who performed my AN removal, and their staff has been extremely helpful.  The nurse worked with me to get an MRI as quickly as possible, and made room for me to go see them sometime this week.   

Pray for me today as I will pray from all going through these difficult times.

Sincerely,

Pablo

BostonBill

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Re: Hello -- back again
« Reply #13 on: March 21, 2011, 10:45:24 am »
Hi Pablo,
I received the call from my Doctor within 4 hours of the imaging. Could have been a result of all principals schedules aligning and my early am appointment. The technicians will not be able to hand you a report as this is drafted by the expert reviewing your scans.
Best of luck,
Bill
Diagnosed Dec 21, 2010, 1.75 x 1.75cm plan is for retrosigmoid removal scheduled for June 15th at MGH by Dr Barker & Dr Lee. Putting off so I may enjoy my sons senior year varsity hockey, lacrosse seasons and graduation. That and our annual trip to Cancun in May.

Cheryl R

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Re: Hello -- back again
« Reply #14 on: March 21, 2011, 10:55:07 am »
The steroids will not hurt and may help.     If there is the small chance there is a tumor they will not take it away but may help with some swelling.         I was on the same dose recently for a possible eustachian tube blockage and did help.     I did that dose and then no tapering.     Good lcuk with the tests!                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care