Author Topic: New here but kind of concerned!  (Read 4281 times)

PerfectEyes

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New here but kind of concerned!
« on: June 25, 2013, 09:06:57 pm »
I will start with basics and apologize for the length of my first post :( I'm 45, had all kinds of ear infections as a child, ruptured ear drum, tubes placed, and a hole appeared in the ear drum that was noticed when I was 16. It was always the left side! At that point I started having a small amount of hearing loss but I had a tympanoplasty done and the doctor said the surgery was a success. I since then had ear infections here and there but nothing like they were before age 16 and surgery was done. In the last few years (say around age 40) my daughter and I decided to goof off and do a hearing test at Walmart. Mine failed miserably and I was in the critical range with most of the test. Now, previous tests have shown some critical levels but most were ok so it kind of went reverse on me. I went to a specialist which I skipped many years of not seeing. He repeated the same test as Walmart and said yes, they were accurate and he would check me again in the next 6 months. I went to another specialist about a year or two later (age 42?) and they said my test now showed critical in all aspects of the test and said they would repeat in 6 months to a year. Their concern was a tumor (they did not go in to detail). I did not go back and repeat the hearing test but I noticed in the last year my hearing is horrible. Balance is on and off unsteady. Back late last year, I had a massive head pain that came on quickly and within minutes I was pacing the floor pulling my hair (very hard)! I went to the ER and they did a CT and said everything seemed fine. Within 3 hours of the start of this pain, it was gone with no pain relievers (strange)! The pain seemed to be in the back center but a little toward the right (affected ear is the left side). Just this week I started having a little discomfort in the left ear and didn't think much of it and put it off as getting water poured directly in my left ear the week before at the water park. On this past Saturday I went all day at work feeling fine, then toward the last few hours of early evening I started feeling sore all over, and felt like my ear was clogged and had pain from behind my ear down through the jaw and felt like a swollen lymph node. Then Sunday I woke up with a fever, sore throat and pain so bad down my left side of the neck and felt a knot (swollen lymph node), also had a very bad headache again. I had to go to the ER and he said my left ear looked ok and my blood work didn't show a white count, CT that he did was fine. On the way there I felt a massive pain in the left ear with severe ringing (which I get from time to time but not this severe) and lost all sound for a few minutes. Next day when I woke I actually had pain and swollen lymph nodes on both sides. Now it's just pain and swelling back to the left. Fevers are gone though. Does this sound like AN? The CT's I had done were for complaints of headaches, could they see behind the ear with those types of CT's? Can a doctor look in your ear and see this? Can you get severe headaches or head pain every now and then? So many questions! I'm just looking for any type of direction to go with this and any input would greatly help! Yes, I am calling the specialist again and getting an appointment the first of the week!
« Last Edit: June 25, 2013, 09:42:58 pm by PerfectEyes »

james e

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Re: New here but kind of concerned!
« Reply #1 on: June 26, 2013, 10:55:59 am »
It is time for you to see an ENT. There are several neurological reasons that can produce your symptoms, including an AN.  It might not even relate to your ears, but an ENT is a good place to start. I have always seen emergency rooms more as trauma centers. Not discounting your symptoms, but it is time to see a specialist, not an emergency room.

James


Jim Scott

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Re: New here but kind of concerned!
« Reply #2 on: June 26, 2013, 11:38:48 am »
Perfect Eyes ~

I'll offer my assent to the advice given by james e and add that I would ask the ENT to order an MRI head scan - with contrast - to 'rule out' the possibility of a skull-based tumor (acoustic neuroma).  At this juncture, the exact cause of your symptoms is unknown but by having the MRI, it will either help you and your doctor to be assured that the cause is not 'internal' (and, if tiny, difficult to see with a CT scan), or that you do have an acoustic neuroma.  If so, a treatment plan can be formed and save you a lot of time and possible discomfort chasing down phantom causes (for your symptoms) that don't exist.  If the ENT you consult does not want to order the MRI (a physician has to do this) seek out another doctor, perhaps a neurologist, who will order the MRI.   

Please keep us updated on the MRI results, AN or no AN (I hope it's the latter).  Thanks.

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.

PerfectEyes

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Re: New here but kind of concerned!
« Reply #3 on: June 26, 2013, 04:41:25 pm »
It is time for you to see an ENT. There are several neurological reasons that can produce your symptoms, including an AN.  It might not even relate to your ears, but an ENT is a good place to start. I have always seen emergency rooms more as trauma centers. Not discounting your symptoms, but it is time to see a specialist, not an emergency room.

James

Thanks James and I understand that the ER should not replace family doctors or specialists as they are there for 'emergency' treatment. But both times I felt like I needed that 'emergency' treatment! LOL! Yes, an ENT appointment will be made and I will be evaluated by the first of the week to start! I'm long overdue to see them anyway. I'm still hopeful to hear if this kind of appearance is common in AN? And if the CT for my headache/head pain should show my middle ear or if it has to be separate? Any ideas on those?
« Last Edit: June 26, 2013, 04:44:43 pm by PerfectEyes »

PerfectEyes

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Re: New here but kind of concerned!
« Reply #4 on: June 26, 2013, 04:49:21 pm »
Perfect Eyes ~

I'll offer my assent to the advice given by james e and add that I would ask the ENT to order an MRI head scan - with contrast - to 'rule out' the possibility of a skull-based tumor (acoustic neuroma).  At this juncture, the exact cause of your symptoms is unknown but by having the MRI, it will either help you and your doctor to be assured that the cause is not 'internal' (and, if tiny, difficult to see with a CT scan), or that you do have an acoustic neuroma.  If so, a treatment plan can be formed and save you a lot of time and possible discomfort chasing down phantom causes (for your symptoms) that don't exist.  If the ENT you consult does not want to order the MRI (a physician has to do this) seek out another doctor, perhaps a neurologist, who will order the MRI.   

Please keep us updated on the MRI results, AN or no AN (I hope it's the latter).  Thanks.

Jim

So an MRI with contrast is best to detect AN? I know the ENT said if hearing showed worse he would order a CT but he didn't mention with or without contrast. He really didn't even go in to detail about what his thoughts were except he would be looking for a tumor.

Jim Scott

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Re: New here but kind of concerned!
« Reply #5 on: June 27, 2013, 09:00:36 am »
So an MRI with contrast is best to detect AN?

Yes.  It's known around here as 'the gold standard'. 

Quote
I know the ENT said if hearing showed worse he would order a CT but he didn't mention with or without contrast. He really didn't even go in to detail about what his thoughts were except he would be looking for a tumor.

Unless you have a reason for not being able to undergo an MRI scan (there is no radiation involved) the MRI with contrast is preferable to the CT scan for detecting a small acoustic neuroma.  A big one, as I had, (4.5 cm) will glow like a 100-watt bulb on the scan results.

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.

arizonajack

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Re: New here but kind of concerned!
« Reply #6 on: June 27, 2013, 10:25:57 am »

So an MRI with contrast is best to detect AN? I know the ENT said if hearing showed worse he would order a CT but he didn't mention with or without contrast. He really didn't even go in to detail about what his thoughts were except he would be looking for a tumor.

Your ENT seems a bit wishy-washy.

At this point I'd be insisting on an MRI with contrast without any further delay or be looking for another specialist. Neurotologist perhaps.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Echo

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Re: New here but kind of concerned!
« Reply #7 on: June 27, 2013, 10:35:59 am »
I agree 100% with everyone here, please request an MRI with contrast.   I was diagnosed one year ago with a 1.8cm AN.  My ENT requested both an MRI and CT, explaining that each test looked for something different.  My CT was done first and came back clear - no issues!  The MRI followed within a week and the AN was found. 

Good luck!
Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital