ANA Discussion Forum
General Category => AN Issues => Topic started by: pfmarquez on March 14, 2011, 10:46:50 pm
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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
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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
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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.
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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!
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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...
K ;D
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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
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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?
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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
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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
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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
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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.
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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
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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
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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
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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
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I learned the hard way to always pick up a copy (or copies) of the MRI CD right at the time of the MRI. Also at the time, I ask when the report will be ready and go back and pick up a copy of it. I had one too many experiences of not being given the information on the report in a timely fashion. You have a right to all of the information as soon as it is available. However, if you are going to be upset by any negative news, I would advise waiting to hear the report from your doctor.
Let us know what you find out.
Clarice
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Good luck!! I have had periodic problems with fluid/swelling in my good ear as well. Steroid nasal spray cleared it up for me. I have allergies and small eustachian tubes...nice combo. :-P It goes from sounding like being in a barrel or underwater, to everything being robotic sounding and off-key. I had these problems before, but it wasn't as bothersome with 2 ears to hear from.
I hope it turns out to be something minor and easily fixed!!!!
Vonda
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I'm happy to report the MRI came back negative and clean with no identification of any masses. This was such a huge weight lifted from my shoulders, and I praise GOD for blessing me! Yesterday, I had an ECOG & ABR test, and will go over it with the ENT on Thursday. I have a free day today to not have to deal with any doctors or tests...looking forward to that. This weekend I started to read up on Sudden Hearing Loss and called the ENT on-call and requested a dose of steroids. So, I'm on a pretty high dose tapered off for 15 days. My main symptoms were, 1) loss of high and low frequencies 2) pressure/fullness 3) some tinnitus (very little vertigo if any). It seems as though I notice less symptoms when I am outside. I spent most of the day outside yesterday which made me feel like the symptoms were almost gone, but they are still there. At least the pressure has subsided some which was the most unbearable of the symptoms. I still get some popping about 8 of 10 times I swallow.
I just wanted to Thank everyone for the kind comments, responses, and definitely prayers...you are all in my daily meditations. I am still grieving from the loss of my father, and I now feel I can grieve in peace. This setback has allowed me to re-focus on my life and the way I should be living..the husband, father, brother, son I should become. I turned my back on this forum and put my AN issues behind me a long time ago. I will not do that again. I am here to stay to help all of those in need with this problematic issue as much as I am able. I am going to start to look for a AN support group and continue to share with everyone's struggles. I live in KC, MO - so if anybody knows of one, please let me know.
Thanks Again & God bless
Pablo
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Pablo, I am very happy to hear of the good MRI. The swallowing noise is eustachian tube related as I have had it since my last surgery and my neurotologist is not concerned. Annoying but I ignore it now. I hope you do get some more answers. Right now is being a hard enough time. We are thinking of you! Cheryl R
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Pablo,
So glad the MRI came back clean! Enjoy your day.
(I grew up in Prairie Village, KS, a suburb of Overland Park~ family still lives there...I hope you find a support group.)
That is what is so nice about this forum. It is always there to come back to. So glad to hear that you are here to stay. Don't do the guilt thing about not staying on the forum, or "turning your back" on the forum. This IS a great place just "to be" as we all continue our "journey" in the post AN life that no one really gets :P
Cheers :D
Maureen
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Pablo ~
Congratulations on the fabulous news! Prayers were answered and I'm very happy for the positive outcome. Enjoy your day off!
Jim
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Pablo,
Great news.
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WONDERFUL news, Pablo!! ;D ;D
K ;D
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I'm so sorry for the loss of your father, Pablo. You got wonderful news and I hope everything continues to be good news.
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Whew! What a relief to learn that your MRI was clean! Perhaps this news and relief will now allow you to complete the grieving you need to do for your father. It is not an easy time.
Both of my parents are now gone, but my father died first ..... unexpectedly at age 70 and I can still remember the emptiness I felt for a very long time. Still wish I could talk with him and tell him all about his grandchildren (my kids), etc. He would be so excited for them.
Many thoughts and prayers for you.
Clarice
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Thanks Clarice - you know my pain...its a very empty feeling, I'd rather it be physical pain. I miss him dearly. Dealing with the anxiety of this latest auditory issues just added to the stress. Its been a very difficult couple of weeks.
I went to the ENT today, and found that the results for the ABR and ECOG test were both negative. So, from a grand scheme of things, the worst case scenario has been ruled out. Thats a big relief and I'm so happy to be blessed.
Unfortunately, I still am having the symptoms and its been 16 days now. The pressure is the most annoying. The ENT is treating it like Meniere's Disease. So, he started me on some diuretics and wants me to cut down my sodium and caffeine intake. I'm going to try this and hope the symptoms go away in a month or so.
Anybody here ever been diagnosed with Meniere's? Are there any other tests that you know of that I should try? Should I continue to be diligent and look for further answers? Maybe see an Otologist? I'm scheduled to see my AN ENT surgeon next Friday. Maybe he can shed some further light on my issue.
Thanks again for the kind responses -- I am forever grateful -- you are all in my prayers daily. GOD BLESS!
Pablo
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Hello Pablo,
So glad your recent MRI came back clear! So sorry for the loss of your father. How are you doing? Hope your ear issues have improved. Welcome back to the forum and please keep in touch.
God Bless,
Laura Lynn
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So, after seeing two different ENTs, they both concurred with a Meniere's Disease diagnosis. This diagnosis is somewhat of a fall-back once everything else has been ruled out. Although most sufferers of this disease have unbearable bouts of vertigo, I have not experienced any vertigo. My symptoms continue to this day 4/15 since 3/8 - so for about a month, and primarily include the pressure/fullness and a little tinnitus. During my second ENT visit, an audiogram showed my hearing was back to normal range, so that was good news. Perhaps (it might have been the steroids or the diuretic). I don't feel my hearing has gotten any worse.
Although Meniere's has no "cure". There are several remedies that can help the symptoms which are primarily: pressure/fullness, tinnitus, hearing loss (high/low frequencies), and vertigo. The ENT started me on a diuretic and a low salt diet. These helped relieve symptoms. I'm done with the steroids at this point. I'm simply taking the diuretic, trying to maintain a low sodium diet (<2500-3000), and taking certain vitamins and supplements.
I know I've been incognito, but all my spare time is being spent on a similar forum - menieres.org - trying to soak up as much knowledge as I can. I'm going to be in LA during June for work, and am planning on going to see someone at the House Ear Clinic.
Although I've found relief, it appears these symptoms may be with me for a long time if not ever.
Thanks for your thoughts and responses - I appreciate them. I hope everyone is well.
Pablo
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Sorry about your Dad, but good news about your MRI. When my vertigo was at it worst (prior to my surgery) I took Zofran and it was like a miracle to me. There is a generic available. Zofran was $60.00 per tablet, so ask your doctor if this drug or its generic might benefit you. Good luck to you.
James