finally getting MRI's next week

[windingshores]

Hello, new here.  I am a  73 year old woman with a slew of medical issues  but hardy.   Spinal stenosis in neck with radiculopathy and myelopathy.  Lupus and possible scleroderma.  Had  breast  cancer, am being treated for osteoporosis and  have several spinal fractures.

For maybe two or even three years I have had increasing  numbness of my left cheek. Feels like I had lidocaine at the dentist.  All the time but intensity fluctuates. Also what has been diagnoses as trigeminal and occipital neuralgia also on left side.

I can't even remember when tnnitus started but it got a lot worse two years ago from music.   It has been louder in the last 6 months for no reason.  I also seem to have  hyperacusis  though only certain frequencies (leaf blowers!). Loud noises greatly increase pain and numbness on left side of face, I would say  8-9/10.     

I tried playing rain sounds overnight last year to deal with tinnitus, and woke up with terrible balance. Not room spinning. I felt like I was being pulled to the side and couldn't tell where I was in space.

Some high frequency hearing loss on left side, going again for hearing test tomorrow.

Neuro had an MRI done 2021 w/out contrast . Report said it could not tell about tumors  w/out contrast.  He took that  MRI as a no.

I have bouts of vertigo and have been told I have "central vertigo" and "vestibular migraine."   These are brief one day episodes. Also nystagmus on one side at times- jsut did paraneoplastic  syndrome blood test because nystagmus warned me of cancer in the past.


My neck and shoulder issues definitely pull on muscles that could press on nerves or blood vessels. My left arm is often shorter than the right because of a knot in  that shoulder, and pain goes down my arm.   My back is very tight from fractures and that affects the neck too.

A couple of doctors over the years have suggested I have MS.

So?  My PCP has ordered   MRI brain, MRI brain angio, MRI neck.   I am seeing an acoustic neuroma doctor this week to address that possiblity.

I am concerned about MRI's effect on tinnitus.  Has anyone had their tinnitus worsen on an  MRI? This would be a long session and I am wondering if I should prioritize brain over neck and just do one, since I already know about my neck.

I am also concerned for kidneys with contrast and want to talk to MEEI about newer  contrast that is more benign.

So neck issues causing symptoms or acoustic neuroma?  It seems that my auditory and facial nerves are affecting each other since loud noises like  leaf blowers  cause the pain and numbness on left side to get worse.   I have been living with these symptoms for quite awhile but they have kind of reached a crisis point.   The thing is, if I don't have surgery, is there a point in doing MRI's?  Thanks!

[BertH]

Hi, I'm Roberta Hutchings, one of the moderators on the ANA site. I felt compelled to respond to your post.

Please have the MRI with contrast. A neurosurgeon with extensive AN experience will not do surgery without diagnosis without an MRI scan to confirm the tumor.

I'm close to your age, 16 years out from retrosigmoid surgery to remove a 3.5 cm. acoustic neuroma. My hearing was gone years before my diagnosis, but symptoms were exhaustion, tinnitus, facial numbness, dizziness and balance problems. Those are typical symptoms of acoustic neuroma, some of which you are evincing.

Please ask your doctor how much experience they have with acoustic neuromas. If he/she is only doing the surgery occasionally, please another neurosurgeon who's experienced with them. There are several centers around the country who specialize in treating them.

Like I said, please get the MRI done asap. At that point you'll know exactly what you're dealing with, and can make a plan for moving forward.

If you'd like to talk, my number is 720-225-7421.

Bert

[windingshores]

Thanks Bert!  I am seeing a "top doc" who specializes in AN among other things, at a top  eye and ear facility.  I see him before the MRI. I am having kidneys tested today but expect the eGFR to be stage 3 at the best.  I will ask about any contrast I can tolerate.  I think I will prioritize MRI of brain over neck.

This has reached a point where it is impacting my life.  I bought a small condo and am selling it due to the effect of the hum of the AC of the person downstairs. I had to go out to my car in the middle of the night to get away from it.  This is not misophonia. It is the same effect that I experienced playing rain sounds overnight, causing pain, numbness and loss of balance.  My daughter stayed here and could barely hear it.

The pain and numbness is almost constant now but fluctuates, as does the tinnitus but overall louder. I have learned to accommodate the tinnitus and not stress when it goes up in volume.

I don't feel anxious about the idea of an AN though maybe I should be. I have already dealt with a lot.  I would actually just like to know what the heck is going on.

I may call you!

[windingshores]

@BertH my hearing test did not reveal any changes and hearing loss is minimal, and might even be worse on the right side when my symptoms are on the left.

The testing included audiometry and tympanetry and induced  increased pain, numbness,  as well as dizziness and nausea, the latter two for about 90 minutes.

Without substantial unilateral hearing loss, is an acoustic neuroma still a possibility?

Audiologist suggested that if a neuroma is big enough to require surgery, contrast would not be needed, so I could skip the contrast. She mentioned x-ray!  I will discuss with neuro-otologist in a couple of days.

[BertH]

It's typical to have single sided hearing loss on the side where the tumor is growing. My hearing loss started when I was 33. The audiologist said it was due to nerve damage from when the ex and I were farming. By 2008 when the AN was diagnosed my hearing was gone; it took my hearing on the right side. Hearing on the left is pretty much unimpaired.
The consistent thing I heard over the years from other patients was that their doctors dismissed their AN symptoms. Don't let any doctor dismiss your symptoms. They're real. Even small acoustic neuromas can be very symptomatic.  (Anything under 1 cm is classified as small.) Because you don't know the size, please do the contrast! You want to find this sucker!
I'm happy you've found someone you can trust.

[windingshores]

Does my benign hearing test make an acoustic neuroma unlikely.

I wonder why I have tinnitus and hypearcuse (as well as facial pain/numbness and dizziness) since doctors have explained that tinnitus and hyperacusis are caused by hearing loss.

I read somewhere that typical audiometry may not pick up a certain type of hearing loss. Can't remember details.

[windingshores]

I just got the actual report that says "mild to moderate hearing loss" . This happened in 2021. This audiologist told me I was fine and the following week another one told me I had hearing loss. 

[windingshores]

Mass. Eye and Ear doctor said that with symmetric hearing loss an acousic neuroma is not a concern and he would not do an MRI.  He also said my 2021 MRI, even without contrast, would have picked something up since I had symptoms then.

He did a lot of shrugging and "sorry I don't know" and "sorry I don't have anything to offer you."  It may be my neck.  The MD has said he has had tinnitus since birth (oddly two MD's I have seen have had tinnitus forever and it makes them less empathetic, not more...not that I need empathy for it at this point). He mentioned that when he puts his head back, the tinnitus gets worse and has no explanation for that anymore than he can connect loud noise to facial pain and numbness extending down my neck. Honest but overall dismissive.

Dizziness is "vestibular migraine." according to MD.

It does seem that my bilateral hearing loss, that is roughly equal on each side, would seem to indicate no AN. 

Sorry for repeated posts.  Just went today.