Utah ~1994
At this time I was seeing orthodontists and it was noted that my overbite was too big to deal be correct by any other means but by surgery. I didn't know what I was getting myself into. The surgery needed to break my jaw, move it forward, lock it in place with 2 screws (titanium I think) on both side, and then have my jaw wired shut for 6 weeks. I was always under the impression that when my jaw was unwired I would be able to go about life as normal. Little did I realize that my jaw would be extremely weak, unable to open more than a pinky's girth (I am sure there is a better word) and the pain of trying to use my jaw was very real. I lost a ton of weight during that time and there were a few jokes about it being so effective as a dieting method that it might start to take off :-)
After the surgery my jaw never really worked 100%. Needing to slide it to either the left or the right to open my jaw, occasion jaw pain, clicking and I am sure a few other things I can't remember.
Fast forward to April 2024
I have only had 1 cavity up to this point in my life and I just got told that I had a 2nd. Which I was not happy about and I was sure that my oral hygiene was up to snuff to prevent cavities....I was wrong and a bit embarrassed about the fact that I had another. I went into my dentist to have them work on the cavity and do the filling. I was having a hard time opening my jaw wide enough on my own so the dentist used this plastic blocks to wedge my jaw open. It was a bit of a struggle even with the wedges in place and the dentist asked if I wanted to take breaks, but I just wanted to get through it and power through. When all done everything seemed fine.
Day before my birthday
Doing my normal lunch walk (I do the walk as I have back issues...which are somewhat out of scope for this discussion but I will probably end up talking about it later) and during the walk I hear a very loud ringing in my right ear. It lasted about 5-10 seconds but it was very disconcerting. That night at dinner it happens again...for about the same amount of time....I am just glad is an intermittent issue as I knew that some people had this permanently.
I am very excited about my birthday tomorrow and my normal routine running around town grabbing all my freebies. This one was a bit different because this year I didn't own a car. So I decided as a fun treat to myself I would rent a tesla and there was a Hertz location within walking distance.
Birthday
I wake up and hear the rinsing in my ear...it is not nearly as dramatic as it was the day before but it was there....and I was getting a bit nervous. The pickup at Hertz was terrible, it took about 40 minutes to do the pickup and the delivered the tesla to me with about 12% battery remaining.
Enough about Hertz, I had a great time with the boys running around town getting freebies and showing them some of the old stomping grounds (Of Massachusetts).
The Investigation begins
I start contacting my PCP and googling like crazy to figure out what is going on. Apparently this ringing in the ears is called Tinnitus (there are two ways to pronounce it and I am told both are correct). Found out that it might be caused due to hearing loss and the ringing might go away if you get hearing aids to compensate for the hearing loss and this gives me hope that I will be able to cure this. I schedule an audiologist and 2 ENTs (Ear, nose and throat doctors). I also find out that there are some world class experts in my backyard at the Massachusetts Eye and Ear hospital so I get an appointment with them as well....but the earliest they can see me is February of 2025 :-(
PCP
I get to visit my PCP and sees that I have an ear infection in my right ear. I am thinking this is great, if we can cure the infection we can get rid of the ringing. I get Amoxicillin and told it should take about a week. A week comes and goes and no change. PCP says I need more hardcore antibiotics so I get Cipro ear drops (Cipro is the same stuff they use to treat Anthrax) so I am sure this is going to work now. I go to pickup the ear drops and find out they it is almost $400 AFTER insurance. I am thinking if I can get the ringing to go away it will be the best $400 I have ever spent. I do this for the 7-10 days (I can't remember what the actual duration was but I followed it to a T) and still no change (if anything when I use the drops my ringing is worse)
Audiologist and ENT #1
I get my hearing test done before the ENT. The audiologist says my hearing is normal and I won't need hearing aids. I am glad that my hearing is normal and I won't need hearing aids, but I am sad there is not a clear path to solving the ringing.
The ENT says it could have been caused by the ear infection or it might be Meniere's disease or "Don't worry...but it could be a benign tumor called Acoustic Neuroma or Vestibular Schwannoma". The Dr. said there was nothing that could be done and he didn't really know how to help me and I could consider going to the emergency room at the Massachusetts Eye and Ear hospital to get into their system sooner than February of 2025. I was VERY discouraged by this visit and I was hoping the 2nd ENT would be better. He also would not order an MRI to see if it was Meniere's disease or and acoustic neuroma....I am pretty pissed at this point. TBH in my opinion I don't think this ENT should see anyone complaining of Tinnitus.
ENT #2
Second ENT was interesting and was actually a Nurse Practitioner NP at BIDMC in Lexington. She said there was no infection in my ear. I mentioned that I still had pain in my ear. She said that 99% (maybe it was a bit less) of the time that if there was pain in the ear with no ear infection or visible signs that the pain is referring from the jaw and that I should see my dentist. She does however sign me up for an MRI but not until later in June (We are still in mid May at this point) and I would need to go all the way into Boston (which our traffic is miserable).
So I get working on the hunt for an MRI that is closer and earlier. I get an MRI scheduled for the Sunday of Memorial day weekend.
Dentist
I make an appointment with the dentist to have them look at the filling they did and see if there could be anything referring pain to my ear. My dentist mentions TMJ could be a possible cause and she constructs me a quick brace / thing to keep at my front teeth to prevent my teeth jaw from sliding backwards which might be causing pain. I also get scanned for a more official appliance to leave in long term to help with my bite.
Massachusetts Eye and Ear Hospital
My wife suggests that I call back the Massachusetts Eye and Ear Hospital (MEEH) to see if my appointment could get moved up. I call and they move me up to June 21st. As soon as I start to hang up I panic and think that they moved me to some non-specialist. So I log onto the MEEH website and start looking around on their site to get more information. I see that they had a whole seminar on Tinnitus and I noticed that there was a whole talk on "Tinnitus and Dental Disorder" which sounds pretty interesting.
Tinnitus and Dental Disorders – Including TMJ (Tinnitus Education Seminar) from Mass Eye and Ear on Vimeo.
I watch the Video and 3:33 seconds they describe me EXACTLY. I am now 95%+ convinced that the Tinnitus is caused by TMJ which was caused from being at the dentist with my jaw open so wide for so long. I am not blaming my dentist, I was pre-disposed to having TMJ from my jaw surgery and I should have listened to my body and taken breaks and not tried to look tough by powering through. This is great. If I can treat my TMJ I can treat the tinnitus and be rid of this damn thing.
My MRI is booked for the upcoming weekend and I am temped to cancel it. We already met our deductible for the year so everything at this point it free. I figured "why not" and let's close the 95% and push it closer to 100%.
The BBQ
I am hanging out with work friends at the memorial day BBQ and it is great. I joke with my friends that I have an upcoming MRI and they might find a brain tumor (I did qualify it and say it would be benign).
The MRI
Getting my MRI....this Johnny makes me look pregnant:
The MRI report comes back the Tuesday after Memorial day and I start reading it. It is all medical mumbo-jumbo.
"There is no evidence of vestibular schwannoma or other retrocochlear lesion." ok great, no benign tumor, cool, but I keep reading:
"There is a T2/FLAIR hyperintense, expansile lesion that appears centered in the cortex of the anterior right middle frontal gyrus measuring up to 3.4 x 2.7 x 2 cm" OMG What does that MEAN!?!?!? that can't be good!!!
I keep reading....
"Neurosurgical follow-up is recommended to help guide further management."
I plug some of the MRI findings into perplexity.ai (Which is supposedly a more frequently updated AI using Claude in the background) and it says I have a brain tumor......
FUUUUUUCCCK!
I am bummed and fear the worst.
Neurosurgeon Consults
I talk with 2 neurosurgeons who say very similar things:
- This could not have occurred in a better part of the brain. There is no motor function, no memory, no emotions, no cognition, NOTHING in this area of the brain. Which to me is very strange, why do we even have this if it is not used. I can't remember who I was talking with that later suggested it could be the use of gills when we had them or tails when we had those. I doubt that is what it is for but it is a really nice thought.
- This is a low grade (read: slowly growing) brain tumor that I have probably had in my head for years. Probably between 2 and 5 years. It is probably either an Isocitrate dehydrogenase (IDH) wild or IDH mutant variety. Mutant is better for me....wild.....less so.
- This tumor would have eventually presented with me having seizures
- The tumor has absolutely nothing to do with my Tinnitus (Which is a little sad, would have been nice to scoop this thing out of my head and not have Tinnitus but this pretty much confirms that my Tinnitus is a result of TMJ
- It has to come out, if I leave it the odds keep increasing that this will turn aggressive.
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