Author Topic: Referred by Dr. Google...  (Read 477 times)

MaureenInNJ

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Referred by Dr. Google...
« on: April 06, 2021, 07:29:23 am »
Well, here I am, scared out of my mind without even knowing what's happening...TRULY the cart before the horse.  I hope you don't mind me posting.

52 y/o female

In February I started to experience what I can only describe as a tightness on the side of my face, sometimes extending to the neck.  At times it was both sides, but mostly on the left.  At the same time my ear became very full.  A twinge of pain here and there, but not much.  I figured an ear infection, doctor said nope.

Went to the dentist, it isn't my teeth.  Had a jaw scan, not my jaw.

Nothing has helped 'unclog' this ear.  Finally got to the ENT.  Ordered allergy tests first and I am 'one of the most allergic people I've ever seen!'  No kidding. 

My left nostril is also congested. Nothing showed in nasal scope.

Went back and met with the neurotologist after completing my hearing test.

He said my hearing was symmetric, normal, and my 'pressure' was good in both ears.  To him, 'that makes an acoustic neuroma a low possibility.' So, take some steroids, add this other nasal spray, return in a month.  If necessary we can do a CT....

Now, I've been reading a lot here and this sounds like a familiar refrain.  'It's allergies, your hearing is good, this is good, take these steroids...'

I get tinnitus here and there, lasts for seconds.  I had 2 dizzy spells in about a month - once in bed when waking up and once when out walking.  Very mild. Nothing for the past couple of weeks.

I'm not aware of any balance issues HOWEVER I've read plenty of posts on that as well and some had no idea until tested that they had a balance issue!

All this particular doctor did is have my raise my shoulders up and down(??), raise my eyebrows, scrunch my nose and tightly shut my eyes.  Then he touched a few parts of my forehead and asked if I could feel it.  (No idea what any of these 'tests' are looking for.) 

IF I was only having this clogged/full ear I might not have myself as frightened as I am now.  It is this tightness.  Not really numb, but odd. It still does extend into the neck at times, I also have pain right under the ear on and off, sometimes in the neck.

I should also mention I have 3 bulging and 2 herniated discs in my neck with mild bilateral neuroforaminal stenosis. I mentioned to the ENT that my physiatrist said some of this could be because of my neck, but the ENT dismissed that entirely.

I'm rambling, sorry.  I'm just very scared.  Like many people I'd never heard of acoustic neuroma until I was googling my symptoms.

One thing I have learned from reading here is that a CT will be fairly useless unless there is a large growth.  SO, if none of this is better I'll clearly need to push for a contrast MRI.  Or I guess find a different doctor.

I'm not due to return until the end of April.  Of course, if I continue to panic I can probably get in sooner.

My husband's diagnosis is..."you're fine, you don't have a tumor."  LOL, he is forever the optimist about everything!  He also has the gift of living in the moment and not "worrying until there is something to worry about."

Sooooo, do I wait this out, see if the steroids do anything at all, or call this week and push the doctor sooner?

I know that no one here can diagnosis anything - IF ONLY!  But I'd love any feedback at all.  On the symptoms, the tests I've had, whether to wait and see if anything helps and keep the end of the month appointment, etc.

Thank you for reading my ramblings!

MarlaB

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Re: Referred by Dr. Google...
« Reply #1 on: April 13, 2021, 08:28:55 am »
I'm having PTSD reading your email.

Unless your doctor has a phone booth nearby and turns into Superman with Xray vision with MRI capabilities...a CT scan is not the best practices way to rule out an AN...At least that's what I surmised from all the ANA stuff I have read. But then, I'm NOT A DOCTOR....

I don't know why ENTs throw steroids and antibiotics on symptoms that they suspect MIGHT be a tumor. I have read that steroids in your system also can influence the MRI.

Don't stop advocating for yourself until you get that clean MRI read by someone experienced in the AN realm, an untrained eye might miss it.)

Best to you. You don't want to be in this club, but we are an awesome bunch of people!!


MaureenInNJ

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Re: Referred by Dr. Google...
« Reply #2 on: April 13, 2021, 11:04:46 am »
Thank you so much for your reply, and sorry for the flashbacks!

I will be seeing a neurologist before the follow up with the ENT and I am so nervous.

I have no idea what to expect at this consultation, but it has to be done.

Guessing there will be some balance tests, etc.? Either way, hopefully the neurologist will order the correct testing and go from there.

But I am not looking forward to it!

Greece Lover

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Re: Referred by Dr. Google...
« Reply #3 on: April 13, 2021, 02:26:53 pm »
Maureen,

RELAX. Whatever happens it will be OK!  One reason on here you read stories like yours that always result in the tumor is because people who didn't have a tumor DON'T COME ON HERE! There are lots of things that can cause various symptoms. No need to freak out over what you don't know. (I know it's easier said than done.)

That being said, maybe a second opinion would be a good idea, or at least go back to the Dr. to have her/him explain why the CT instead of the MRI. 

Good luck!

Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

chloes mema

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Re: Referred by Dr. Google...
« Reply #4 on: April 15, 2021, 07:19:56 am »
I was speeding reading thru your post so if I missed this my apologies.

I would insist on an MRI with contrast to finally determine if you do or don't have a AN. 

You have to be your own health advocate!

Good luck.
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

MaureenInNJ

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Re: Referred by Dr. Google...
« Reply #5 on: April 15, 2021, 01:51:47 pm »
Maureen,

RELAX. Whatever happens it will be OK!  One reason on here you read stories like yours that always result in the tumor is because people who didn't have a tumor DON'T COME ON HERE! There are lots of things that can cause various symptoms. No need to freak out over what you don't know. (I know it's easier said than done.)

That being said, maybe a second opinion would be a good idea, or at least go back to the Dr. to have her/him explain why the CT instead of the MRI. 

Good luck!

Indeed. Whatever it is, intellectually I know that worrying about it does nothing! Most things in life are simply out of our control.

Trying my best to not obsess, working on taking this one step at a time. It ain’t easy

MaureenInNJ

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Re: Referred by Dr. Google...
« Reply #6 on: April 15, 2021, 01:55:14 pm »
I was speeding reading thru your post so if I missed this my apologies.

I would insist on an MRI with contrast to finally determine if you do or don't have a AN. 

You have to be your own health advocate!

Good luck.

This is something I have learned well over the years. It is unfortunate but true that we can too easily be dismissed. Or symptoms can be chalked up to anxiety, etc. My appointment with the neurologist is tomorrow, Friday, afternoon. I certainly plan to push for an MRI with contrast and just move this along. If this doctor doesn’t agree, I will start the process of finding a new one. Which of course is never fun because it’s impossible to get appointments in a timely manner, but we do what we have to!

Greece Lover

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Re: Referred by Dr. Google...
« Reply #7 on: April 16, 2021, 08:23:11 am »
Good luck today and let us know what happens.  One "GOOD" thing about these tumors (if you even have one) is that they're rarely an emergency.  You have time. But you're also right--it's hard not to be anxious.

I live in Iowa now, but I spent 7 years in New Jersey.  Didn't think I would ever miss it, but sometimes I do!

Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

MaureenInNJ

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Re: Referred by Dr. Google...
« Reply #8 on: April 17, 2021, 06:30:38 am »
Good luck today and let us know what happens.  One "GOOD" thing about these tumors (if you even have one) is that they're rarely an emergency.  You have time. But you're also right--it's hard not to be anxious.

I live in Iowa now, but I spent 7 years in New Jersey.  Didn't think I would ever miss it, but sometimes I do!

Hello former New Jerseyan!

Well.  I waited over an hour for a doctor to spend 10 minutes with me and put it back on the ENT.  One of the most disappointing doctor visits I've ever had.  Totally dismissed me.

She had me take maybe 6 steps heel to toe, close my eyes, basic exam.  Then pokes me over my face and tells me if I can feel it I'm not numb.  I said, "I never used the word numb, I said a strange tightness, an odd sensation."

I didn't expect a diagnosis, but at the very least I'd had no doubt I've have a script for an MRI.  Nope.  Told me to follow up with the ENT.  I left there MORE anxious than when I arrived.

She said, 'you are sniffling, have a lot of allergies.'  Yes, NOW my allergies are in full swing.  They were not when this started in FEBRUARY.  I've been in my body for 52 years, I know what is normal for me and what is not.  Frankly there was also a great language barrier that didn't help matters.

I called a few other neuros on our plan, all booked solid.  The soonest I can see one is JUNE. I'm on the waitlist for a cancellation.

I'm going to see if I can at least get in sooner with the ENT and push him.

I'm so upset, so anxious, so frustrated.  As everyone here knows it is difficult to distract yourself from any symptoms taking place in your head or face or ear.  If my toe was bothering me it would be a bit less distressing!

No one WANTS to have an MRI, but I know I need one. I'm in such a scary, anxious place right now. 

Greece Lover

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Re: Referred by Dr. Google...
« Reply #9 on: April 19, 2021, 07:39:55 am »
June will come sooner than you think!  I looked back at your original message, and it doesn't seem to me that you actually have any of the classic presenting symptoms. Having symmetrical hearing is a counter-indicator for a tumor.  In the lead-up to my surgery, I felt what I thought was tingly sensations in my face and my Dr. said that it likely was not from the tumor and more from my own hyper-sensitivity knowing there's a tumor in there.  At any rate, I know it doesn't help, but there are a hundred things that could be causing your symptoms that don't involve a tumor. 

good luck, and let us know what happens in June!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

MaureenInNJ

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Re: Referred by Dr. Google...
« Reply #10 on: April 21, 2021, 06:10:34 am »
June will come sooner than you think!  I looked back at your original message, and it doesn't seem to me that you actually have any of the classic presenting symptoms. Having symmetrical hearing is a counter-indicator for a tumor.  In the lead-up to my surgery, I felt what I thought was tingly sensations in my face and my Dr. said that it likely was not from the tumor and more from my own hyper-sensitivity knowing there's a tumor in there.  At any rate, I know it doesn't help, but there are a hundred things that could be causing your symptoms that don't involve a tumor. 

good luck, and let us know what happens in June!

Thank you for this. Time will tell, it always does!

Cheryl R

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Re: Referred by Dr. Google...
« Reply #11 on: April 21, 2021, 02:42:12 pm »
Any dr can order an MRI.     My family practice got me my first MRI.         Was this a neurosurgeon or neurologist who even do ANs.       Many don't.       I go to a wonderful neurotologist.                     The right one is out there.                  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

MaureenInNJ

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Re: Referred by Dr. Google...
« Reply #12 on: April 24, 2021, 02:14:35 pm »
Any dr can order an MRI.     My family practice got me my first MRI.         Was this a neurosurgeon or neurologist who even do ANs.       Many don't.       I go to a wonderful neurotologist.                     The right one is out there.                  Cheryl R

It used to be much easier with our insurance to get an MRI, but policies changed and now we have to dance this ridiculous dance. For my primary care it has to be an x-ray, physical therapy, CT scan, then review and then an MRI. It is easier for a specialist on our plan to order an MRI, after other tests have been done.

So my hope is that the ENT, who should be able to order an MRI without a CT scan first, will simply do the MRI!