Author Topic: MRI and AN Detection or Missed One  (Read 1408 times)

ptarpey

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MRI and AN Detection or Missed One
« on: May 25, 2023, 09:45:31 am »
Hello everyone, I have just joined this board in hopes to find out more about having an AN, and definitely not disappointed in the knowledge and caring people giving support to one another!  Back story...

In Dec. 2023 I came down with full blown powerful left side headaches (after having a tingling/burning spot on my left temporal area for over a year, but ignored it). I've never dealt with headaches before.  My PCP ordered a couple of tests to rule out large cell arteritis and trigeminal neuralgia, and ordered a w/wo/ contrast MRI and CT scan.
She also suggested I see an ENT because the headache is going straight down into my ear and top of neck.  The MRI showed no tumors, which was great, and CT scan which showed no tumor, but a venous abnormality.  I saw a neurologist who noted an AV fistula on the CT scan and he suggested I see the ENT again because he thought once he repaired the fistula, my ear problems and headache might be resolved. I saw the ENT PA and had a hearing test, which showed I have lost some hearing in left ear.  She suggested I have an MRI. I brushed that off and said I already had one and all was good. A couple of weeks later,  saw the ENT himself and also had a brain response test.  That test also suggested I have an MRI, which I brushed off again.

The neurosurgeon did a brain angiogram to see if he could do an embolization on the fistula....and so very surprisingly, there was no fistula there! Two neurosurgeons, ENT, and radiologist report all noted the fistula on the images.  I look at that as a miracle of God's healing and Him leading my Dr. to go a different direction.  Sure enough, he came to me and said that we were going to make a new plan, get another MRI to look for a tumor.  I definitely owe my ENT and his PA an apology for being so flippant about their suggestion of an additional MRI :-\

I have an MRI scheduled June 5, then appt with neurosurgeon on June 22 to discuss results. The headaches are daily and I'm trying not to take too much Tylenol, loud constant tinnitus, pulsatile tinnitus, dizziness and ear pain.

Sorry, that's a lot to just ask the question.... Have any of you had MRI's that did not show an AN, then later another one did show one? The first one in Feb. did not show a tumor.  Having alittle trouble wrapping myself around that from Feb to June an AN could appear, even though I've had symptoms since Dec. Maybe it was just missed in the first MRI or too small to detect?

I'm not freaking out about the thought of an AN because I've watched every video from Drs and patients, and this organization has been wonderful to gain insight. I think it boils down to, I'm torn between hoping it's an AN and we can go forward, versus nothing there and no answers for these symptoms.

Thanks for any input and best to all of you going thru this journey!


donjehle

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Re: MRI and AN Detection or Missed One
« Reply #1 on: May 25, 2023, 07:09:52 pm »
Welcome, ptarpey, to the ANA Forums!

Thank you for sharing your experience, and I hope you will continue to post more and give us an update after June.

One minor correction, you said you had the powerful headaches in December 2023.  Since we have not come to December 2023, you obviously meant December 2022.  So, that was probably just a typo.

I wish you the best for your MRI on June 5.  That is the only way to know for certain whether you have an acoustic neuroma or not.  And hopefully, it will give you clarity on what to do (or not to do) with your symptoms.

Wishing you the best!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

orioles

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Re: MRI and AN Detection or Missed One
« Reply #2 on: September 15, 2023, 09:30:41 am »
I would like a second opinion on my MRI,s is there any radiologist or A.N. specialist that I could send my mri disk to.?

donjehle

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Re: MRI and AN Detection or Missed One
« Reply #3 on: September 30, 2023, 02:25:08 pm »
Hi orioles!

It is wise to get a second opinion on your MRI.  I got a second opinion on my MRI through the Mayo Clinic, but there are many places you can go for a radiologist or a specialist to view it.  You can either visit someone in your area or you can mail your MRI disk to a specialist and consult with him/her virtually.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DanFouratt

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Re: MRI and AN Detection or Missed One
« Reply #4 on: October 02, 2023, 01:25:46 pm »
You are your best advocate so get as many as you need to feel comfortable with the decision.  I ended up talking to 6 doctors (3 ENT and 3 Radiologist) from 4 hospital systems before making my decision.  One thing I did run across is that many of the doctors are not licensed to practice in other states, there are work around but be prepared for that. Good luck in your quest.

Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled