MRI and AN Detection or Missed One

[ptarpey]

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]

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

[orioles]

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]

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.

[DanFouratt]

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.

[failingleather]

I really hope you find the right doctor and have an effective recovery path. Reading MRI results really requires a high level of expertise, so choosing an experienced doctor is very important.

[mwatto]

You should have a MRI. If contrast just ask for renal function test before. My AN was spotted with no contrast- but they still needed contrast for the treatment of CK.
One thing you may have investigated is TMJ. My deep earache and pain behind eye one side seems to be related to TMJ and a custom made dental mouth guard at night has helped so much. Was told I have been clenching for years at night. Its worth thinking outside the box and seeing your dentist-I thought I had trigeminal neuralgia the pain was that bad.  I had alsxiety thinking it was the AN compressing a nerve however since wearing the guard its much improved -I do a few other things such as using a face roller on that side at night. Medical CBN also helped me at times.