Pretty sure I have an AN...

[miltoney]

Hi, new guy here. About a year and a half ago I had a tumor removed from my spinal cord in the lumbar region. It was totally resected and my recovery was great, one year mri was clean (mri was only of the lower back). About two months ago I developed a slight ringing in my right ear that I just ignored for about a month, figured it would go away. Then I noticed that I was starting to have trouble understanding what people were saying unless they were talking directly to me. So I conducted my own crude little hearing test, clicking a mouse with the ringing ear plugged, I hear it fine...plug the good ear and uncover other ear, couldn't hear the clicking.

So I went to my Dr. and he said my ears look perfect, which only further confirmed my fears. I have an appointment tomorrow with an ENT, but I'm pretty sure of whats going on here.

My question is, does the fact that I had a tumor in my spine somehow increase the odds that I also have one in my head...could they be related somehow?

[MDemisay]

Dear Milt,

Not sure about the question you posted!  But if you have an AN (and I hope you don't), you've found the excellent place to talk about it , vent your frustrations and get referrals for doctors and treatment centers.

 It will start with an MRI from your ENT then proceed to a consultation with a physician of your choice. Usually, a neurologist ,neurootlogist or a neurosurgeon. There are several around the country that specialize in this delicate procedure. You can get referals by going to the Physians section.

If you have one, the options will be to watch and wait if it is small or to radiate, or if it is large (and will do some damage ) they will want to operate. I caution you go slowly but not too slowly, you are at the very beginning of a long journey.....My journey has been a long one and I am hopefully recovering from Gamma Knife radiation. Initially, because of a prior surgery in 1974 (for an unrelated AVM) I was extremely doubtful that this could be happening again.  Consequently, I did my best to ignore what I call "the Yellow Flags" of symptoms, had I caught it earlier I might have avoided surgery.

Hopefully, you can avoid it. I will pray for you if you'd like. Welcome to our forum!

I got 14 recommendations which I'm sad to say was too ..... many. I went with "my gut" with the neurosurgeon that made me feel the most comfortable. I would advise getting 3 opinions and settling on the best from there and then letting God do the rest!

Please feel free to come here and update us as to how it goes!

Mike

[CHD63]

Hi miltoney .....

Adding my welcome to this forum .....

None of us are doctors on the forum, but we have a large, collective database of personal experiences.

Since your original post was the day before yesterday and you were to see your ENT yesterday, I hope you have an order for an MRI with contrast of your brain, which is the only truly definitive test for an acoustic neuroma.

In answer to whether you are more likely to have a tumor in your head since you had one in your spine ..... some people are NF2, which is shorthand for neurofibromatosis type 2 (see:  http://ghr.nlm.nih.gov/condition/neurofibromatosis-type-2 ).  I am not NF2 so I am far from knowing much about it.  However, several posters on here are and hopefully they will chime in here soon.  From what little I know about it ..... in the people I know about ..... most have had ANs first.  If, indeed, you do have an AN, then you certainly need to ask some questions of your doctors about the possible connection.

Please let us know what you find out as it helps others to know this information.

Many thoughts and prayers.

Clarice

[miltoney]

Thank you both for the great info! I did go to the ENT yesterday and had my hearing tested. I do have a significant hearing loss in the right ear, which was no surprise. The doctor wants me to take another hearing test on Tuesday to confirm the results, and he said something in the results just didn't make sense...he tried explaining but I didn't really get it.

In our discussion he did say that there appears to be something going on with the nerve going to the ear, but before we jump into an mri, he said he may put me on a regimen for Meniere's disease, to try and rule that out. My problem with this is, this can take a month to see any results, and the results can be minimal even if I did have the disease...I just think it would be very inconclusive. I would think he would want to rule a tumor out, and then try to treat the disease. Why are Doctors so hesitant on ordering mri's? It took me years of going to the doc for the same back issue before I finally got an mri which revealed my tumor.

I think I'm going to insist on an mri, even though it will cost me alot of money with my crappy insurance. I don't feel like wasting time again on this like they did on my back.

[CHD63]

There may be other extenuating circumstances in your case, but with your history, I do not see why the doctor wants to try a regimen for Meniere's Disease before an MRI ..... maybe there is a good explanation.

Just curious ..... do you live in the US?  (We have a number of posters on this forum from Canada, UK, and Australia where the protocol for ordering MRIs is quite different.)

Sorry you might have to pay some out-of-pocket expense for an MRI, but it would certainly be worth it to me to know.  If you are in the US, you should be able to argue with your insurance company for coverage.

Prayers .....

Clarice

[Susan A]

Milt,
I started out with similar loss of hearing, tho I did not have a spinal tumor like you. When I went to my ENT, his first reaction was to put me on a course of steroids. I had gone to the ENT because my husband was having the same symptoms . . . the ENT said it was likely we had a virus, but thought the steroids were the best first route. My husband's hearing came back after the steroids. Mine did not. He was eventually diagnosed with Meniere's  and is on diuretics, blood pressure meds, and anti-histamines which together are keeping the symptoms minimal - he still has some tinnitus, but no dizziness.

When the steroids didn't work for me, the ENT sent me for blood tests and threw in the MRI because there was a small chance (he said) that it might be an AN.

Turned out I had an AN AND a meningioma. He was stunned. It took a couple of months and several specialists, but I got a diagnosis of NF2. He had never seen a case of NF2 before, and didn't know that's what I had, but at least when he saw the second tumor he knew enough to refer me to a neurotologist - who knew about NF2, but knew that he didn't know enough about it (AND that with only 2 tumors I was an atypical NF2 patient) and referred me to the NF2 clinic at Mass General.

All by way of saying, your spinal tumor may or may not be related to your hearing loss - but if I were you I'd try the Meniere's regimen for a month and then if your hearing has not improved I'd push really hard to get an MRI. ANs are usually slow-growing - a month is not a long time (tho it may feel like it!!) If the MRI shows even one brain tumor, I'd then push for a referral to an NF2 specialist. NF2 tumors are not treated the same way as regular ANs. It's unusual I think for spinal tumors to show up first in NF2 patients, but there are always unusual cases!

Keep us posted!

[miltoney]

Clarice, yes, I live in New Hampshire. I don't mind the cost of the mri (even though my last one cost me $1700 OOP), I just can't stand the waiting and wondering what is wrong. I have learned that the cost can be drastically different depending on where you have it done, and lets just say that I know where I won't be having it done next time!

And Susan, thanks for your input, I will defenitely mention NF2 to my ENT to make sure he is aware of the condition. I should say that I have complete trust in him, he is very well regarded in this area, he put tubes in my son's ears nearly 18 years ago!

[mk]

Milt,

sometimes ENTs are not familiar with ANs, so they tend to dismiss the possibility and just assume it is something else, which might be easier to treat.  Do you know if your hearing loss is at high or low frequencies?  Meniere's is specifically associated with a specific frequency loss (I don't remember if it was the high or loss frequencies, but you can find it out easily by doing a quick Google search).

Just curious ..... do you live in the US?  (We have a number of posters on this forum from Canada, UK, and Australia where the protocol for ordering MRIs is quite different.)

Sorry you might have to pay some out-of-pocket expense for an MRI, but it would certainly be worth it to me to know.  If you are in the US, you should be able to argue with your insurance company for coverage.

Clarice,

just to clarify, that since Milt mentioned that this may cost him a lot because of the insurance, he could not be from Canada. In Canada we don't deal with insurance companies (other than for the drug plans, dental care etc). Medical costs are covered by the provincial health plans, so there is no direct out of pocket expense for the patient (and yes, the wait time for an MRI may be longer, depending on the priority that the requesting physician places on the requisition - it took me one month to get my diagnostic MRI).

Marianna

[miltoney]

Milt,

sometimes ENTs are not familiar with ANs, so they tend to dismiss the possibility and just assume it is something else, which might be easier to treat.  Do you know if your hearing loss is at high or low frequencies?  Meniere's is specifically associated with a specific frequency loss (I don't remember if it was the high or loss frequencies, but you can find it out easily by doing a quick Google search).

Interesting, I did not know this. Yes, it appears that the hearing loss associated with Meniere's is typically in the low frequency range. My hearing loss is equal across all frequencies...the line for my right ear went straight across the chart (but of course it was much lower on the chart than the line for my left ear). The other thing is, I do not have the most prevalent symptom for Meneire's, the vertigo.

[mk]

I am not a doctor, but from what I have heard on this forum, equal hearing loss across all the frequencies pretty much excludes Meniere's. Since you have another hearing test on Tuesday, you may want to ask your doctor this specific question.
I am not sure if vertigo is always present with Meniere's. It could be a "possible" symptom, just as it is possible with ANs, but some AN patients never experience it.

Marianna

[miltoney]

I am not a doctor, but from what I have heard on this forum, equal hearing loss across all the frequencies pretty much excludes Meniere's. Since you have another hearing test on Tuesday, you may want to ask your doctor this specific question.
I am not sure if vertigo is always present with Meniere's. It could be a "possible" symptom, just as it is possible with ANs, but some AN patients never experience it.

Marianna

Great, thank you all so much for your input, I learned alot in this one thread! The doc did mention an mri a couple times so it shouldn't be hard to tip the scales enough to get one.

And Marianna, I see "SSD" in your sig, what is that?

[PamJ]

SSD is Single Sided Deafness, I've this from the removal of my acoustic neuroma

[miltoney]

Well I had my repeat hearing test yesterday...still not sure why this was even needed, even the audiologist was confused as to why I was there again. A small part of me wonders if the doc suspected me of faking the first exam, because this time he also ordered an Evoked Otoacoustic Emissions test, which from what I have read is usually used on infants, the elderly, and those suspected of feigning an exam, because it doesn't require any input or response from the patient. Whatever the reason, I'm glad they did it because my right ear failed three out of the five frequencies tested. Not to mention my hearing exam results were identical to the one a week earlier.

So now I have to wait for them to get back to me with what the next step is...really hoping it's an mri.

[geexploitation]

I hope you get an MRI soon -- I must admit I don't understand why your doctor seems reticent to do so. Ordering an evoked emissions test seems strange if a) you have an audiogram that shows hearing loss and b) you aren't establishing a baseline for a surgical procedure.

[miltoney]

They told me Friday I was being scheduled for an mri, and then called me today and said the doc changed his mind, he wants me to do the Meniere's regime for a month and then go back for another hearing test. Whatever, I'll jump through their hoops, went through the same thing with my back. At $600 per office visit, I can see why they want to get as many visits out of me as possible.