Author Topic: First post. 1.2 AN but new MRI next week. Severe tinnitus, need advice please?  (Read 1318 times)

BigJoeBass48

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I'll be as brief as possible, only facts. I've been reading posts here past 8 months. In April of 2014, my dentist sent me to an oral surgeon to have tooth #5 extracted. He did horrible job and removed bone above #5 causing a huge valley, had to get 4 tooth bridge. When I left his office I heard something I've never heard before---TINNITUS! Intermittent for 8 months then went away in December of 2014. So 2015 and 2016 were silent but I moved to this trash area in 2016 and needed root canal on #31,back lower molar. The endodonist I saw 10-12-16 pushed #31 roots into IA nerve so every time I ate sent food particles directly into nerve, causing vice-like grip on my face for 20-40 minutes after eating. 18 months on Oxycodone. Tooth #31 removed by "specialist" 11-24-16, he started Hydrocodone. He took numerous X-rays on ancient skull cap X-ray machine then wrote to head/neck surgeon and told her I had AN. The following is so important. She tells me in January of 2017 after 1st MRI and talking to "specialist" that I have tiny fly speck 0.8 AN and shows me on blow up that it is growing on side and I should get cyberknife but I've heard of this procedure and effects it has on people, increased tinnitus, pulling, crawling sensation on face for months, years after, i tell her NO WAY! On 4-24-17 I go to 32 year old rookie doctor who does nerve block surgery to try to alleviate coming and going pinching, squeezing, crushing pain throughout my entire lower jaw, unbelievable pain 6 months! After this procedure in recovery room I hear TINNITUS for first time since December 2014 and tell this pathetic doctor who says it will go away. It did, for 2 days then back! It has followed same pattern for almost 3 years now, just maddening. He puts me on Nucuynta. 3 different opiates and they knew I take 4 mg of Ativan since 1981. Hard to believe I am still alive, new doc says I was 4x more likely to die mixing benzos and hard opiates together for 18 months. I complained about these dentists until I was blue in the face to the dental agencies and they did nothing. I sued and lost to the one that did the root canal. Over $15K just in costs he owes me. Would not even return my money for the so-called root canal "procedure" which has taken away over 3 years of my life so far.

So I go back to see this head/neck surgeon about a splint she had designed for me that broke. Saw her last week. Now this is what she tells me, how crazy is this? She says: "I am positive that the 1.2 AN is causing 100% of the tinnitus and it is growing making the tinnitus more severe but if you think you know more than me then forget the MRI.." I reminded her that she diagnosed the 0.8 an in January of 2017 and I still had no tinnitus! The tinnitus started after the nerve block on 4-24-17. BUT SHE STILL INSISTS THE 1.2 AN IS CAUSING THE SCREECHING TINNITUS! >:( Next week my 3rd MRI, all those bangs and pops in little claustrophobic tunnel over an hour. First MRI in 2017 showed 0.8 AN, 2nd in January 2019 was 1.2 and next week probably little bigger. This melodramatic brain surgeon has been phoning me and telling me: "30% chance of PERMANENT hearing loss in both ears, you could wake up and be deaf except for the tinnitus!" He had cyberknife doctor phone me and he tells me: "You could live another 30 years before the AN would kill you (I am 62) and I would not know if Cyberknife made tinnitus better or worse for 6 MONTHS!" I was on Trigeminal Neuralgia site where people wailed about tinnitus CAUSED by cyberknife as well as crawling/pulling sensations on face. Everything OTC I have tried on the tinnitus has worked for 4-5 days but then, like a super soldier, the Tinnitus adapts and overcomes and comes back louder than ever. I put on white noise and hold cell phone right to my right ear and at first it made it go down 2-3 days but again it has adapted and now just gets louder. Hours of white noise through blue tooth but now left ear has tiny bit of tinnitus too. 25 USA vets commit suicide every day on average and many have tinnitus, per tinnitus class I attended. Someone said COQ 10 works on tinnitus? Another said Klonopin works. My doctor won't give me Klonopin because I take 4 mg/day of Ativan. Now they are concerned about me dying, not before with all those opiates mixed with Ativan. I'm a 50 year member of this HMO. I hope this is not too long. I WELCOME ANY COMMENTS/ADVICE? Thank you.

ANSydney

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Welcome to the forum BigJoeBass48. There's a lot to take in there. Let me say a few random things.

1) Well before I was diagnosed with an AN, straight after I had a gold crown fitted, I had altered taste. I eventually discovered it was only on one side and it led me to investigate further. In my case, it looks like dental work triggered the facial nerve to react to the tumor.

2) Radiation treatment will not fix your tinnitus.

3) I suspect dental x-rays may be a cause of ANs, particularly the older units that use a higher dose.

jami

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Hi BigJoeBass48 (awesome user name),

We all have complicated non linear experiences, especially because symptoms are varied and root cause is not clear. You will not find an answer and clear path forward. Its confusing because so many things happen "around the head" that cause and effect is unclear. This turns into judgement calls, and this forum is a huge help in navigating through the journey.

I had symptoms, surgery and then later, CK. The surgery meant I lost my hearing on the right side and my balance nerve - but until they were actually doing the surgery, they could not tell what the AN was growing on. My life is different. The results from CK have a longer outcome, but i may be avoiding another surgery. I also have gone through the challenges when someones brain is trying to work through damage, healing, etc. So even thought processes are tough.

That said, consider getting a hearing test to see if your hearing is fading (people without an AN who lose hearing also have tinnitus, so its a good thing to begin understanding). Be aware that size matters - usually. As small AN can lead to the same symptoms on some (based on position) as a large one. We ALL have different symptoms.

This is really tough, and its an emotional journey, different for all. I type this with a new symptom of such a bitter and sour taste on my tongue this week, due to stuff happening in my head, that i lost 3 pounds.

Lots of support virtually.
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

Greece Lover

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I think Jami has said it well here that we all have a nonlinear experience, both because the symptoms vary and so do the treatment options. I'll offer my free advice/thoughts:

1. No one knows what causes ANs.  While we'd like to know, and many of us speculate, I wouldn't waste time and energy on that.  The doctors don't know. IF they figure it out, they'll publish it in legitimate academic literature and inform us.
2. So far as I can tell, nothing can really fix tinnitus.  This is frustrating but true.  There are some reports of certain things that help, and maybe they do anecdotally, but they don't ever hold up under scientific scrutiny. Tinnitus is a mystery and one that most of us with ANs have to bear.
3. If I were you, I'd forget about all the unfortunate experiences with the dentistry issues and try to wipe the slate clean with the AN. Maybe see a new ENT doctor or surgeon to get a second opinion. 

I wish you peace and best of 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 not tumor.  No MRI for four more years!

BigJoeBass48

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Thank you so very much for these replies. I definitely will get a second opinion. But these doctors are acting like it is a "do or die" situation because the tinnitus is getting louder and more frequent. Like I said in my long post, everything OTC seems to work for about 5 days. Then the supersoldier tinnitus adapts and overcomes anything I throw at it. I really feel uncomfortable arguing with brain surgeons.

I really wish the people who said Klonopin and COq10 worked against this monster could get back to me? Or any other remedy? Music or "tinnitus relief sounds" through a Bluetooth or sometimes cellphone right up to my ear w/o a bluetooth are the only things that offer any escape. I had an ear infection from all the ear drops and they prescribed Oflaxacin 03% and another Eureka moment but after 6 bottles in less than a year, tinnitus has overcome even these.

I have another hearing test scheduled in March. All of the rest have showed almost completely perfect hearing, the right ear drops off just a bit at the end. 2 Audiologists have told me: "Once you have tinnitus, you have it for life." At least they aren't lying or giving false hope. I am a 50 year KAISER patient, by the way. I would submit to this Cyberknife instantly if I knew for sure that it would get rid of the tinnitus. William Shatner "habituated" his tinnitus with white noise (his doctor committed suicide from his tinnitus) but Shatner never says for how many hours a day or for how long. His tinnitus was constant and mine is "intermittent" though I can always hear it. Just want to make it go down in volume. Thank-you to all who replied to my long post! Joe

 


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