4 months post revision update

 Some where over the Atlantic Ocean, June 2011



"Ouch!!!" That is all I am able to communicate to my husband Brian as we make our way home from Madrid Spain. I'm feeling pressure and extreme pain in both of my ears as we descend to our destination of NYC. I have had minor similar experiences to this when I have flown in the past. I figured that by the time we reached land that my ears would normalize again.

No, this time wouldn't be the case. After a few days I made an appointment with my ENT and his finding was that I had Eustachian tube disorder. I knew that from the past when I was a child and was almost a candidate for tubes in my ears. My doctor suggested something to clear my nose and ears out.

A week later I'm back in his office. The extreme pain and pressure haven't subsided and I'm at my wits end. I'm a full time music therapist and this pain just isn't making work an easy task. I rely on sound and vibrations all day to work with my clients. Drumming, singing, morraccas (ouch!!!!) and any other sound cause extreme pain. In this visit he recommended that I schedule a hearing test. I leave his office still in pain and still at my wits end.

An exhausting self diagnosing Google search later and I'm finding that TMJ has similar characteristics to my symptoms. After more research, I conclude that maxiofacial surgeons may have the most experience in that area. Another Google search and I find a doctor close by to my home.

I meet with my new doctor a week later. He recommends that I get imaging of my jaw area and another week later I am back in an office hearing more results. He tells me that he believes I have TMJ and should follow up with a more experienced maxiofacial surgeon. He discusses that he believes my case is pretty advanced that he can't treat it. The blessing in this, is that he recommends one of the best in my area for TMJ.

In between I have the hearing test and meet with my ENT. He concludes that I have 15% (right ear) and 25% (left ear) hearing loss. He believes it is conductive hearing loss and may come back in time. He sends me for one more test to rule out an auditory processing disorder test. Luckily I find out in that appointment that it's negative.

A few weeks later, I'm sitting with my new maxiofacial surgeon. He looks over the results from the previous doctor and informs me that I do have TMJ and also adds that I have arthritis in my TMJ joints. He recommends physical therapy and an appliance for grinding my teeth. At this point, I have used countless hours of sick time, so much money has been spent on copays, treatment and my retainer and I'm still in pain.

Yes, a week or so later I am in another office meeting with my new physical therapist. After 3 sessions he concludes there is nothing he can do for me and my treatment is discontinued. I receive my retainer for my teeth grinding around this time and am also told by my new maxiofacial surgeon to see a neurologist for the ongoing pain.

A month later I am being sent by my new neurologist for further testing. After some imaging, she concludes that I have geniculate neuralgia. She advises that a high dose of a particular medication should help.

For the first time in six months ( I think? My timeline is off all these years later), I feel relief. In between I find a chiropractor in my area that understands TMJ and provides effective treatment for it. I went to Europe with my husband for a beautiful dream vacation on our baby bucket list (yes, one of the many things I wanted to achieve prior to bringing my children into the world.) and ended up with so... many... diagnosis'! What the what the?

Fast forward a few years later. I've gone off the heavy duty, yet effective medication. I couldn't have it while I tried for a family. I'm still seeing my chiropractor, using my retainer and getting yearly hearing checks. 2016 comes and in the spring my son is born. After a rough start in breastfeeding and much damage to my body, we realize that he has a tongue and lip tie. He has 2 removals (the last being effective due to another great maxiofacial surgeon that used a laser). During this time the lactation consultant that I've had the pleasure of working with for both of my children, informs me that I also have ties and that they are genetic. Let me state, my lactation consultant will forever be a blessing to me. This is what I believe to be a turning point in my new road.

Oh, I forgot to mention, my ears never got better. By this point I've had 1 set of tubes put in (in my 30s, seriously?!?!) and my hearing has further declined to 25% loss and 35% loss. The ENT at this point does not believe my hearing will return and only further concludes that it is genetic. I can not quite put a proper word to the sadness that I have experienced with this and will further discuss it in my blog, as it truly is the central theme to my blog.

Shifting to the current, in February I had a set of t-tubes put in my ears and I have just recently met with my son's maxiofacial surgeon and appear to have really thick ties and have a really tight jaw. He concludes that a lot of the symptoms I have are caused by the ties. He recommended removal and I am currently waiting to set it up along with before and after care for the changes my body will go through. Most people have not heard of ties nor understand them. It blows my mind how much two little pieces of skin can effect so much (tension, TMJ, possibly my hearing and countless other things). I'm setting up more specific TMJ related appointments with my chiropractor and will be meeting with a myofunctional/speech therapist soon. Apparently my voice and body mechanics will want to revert to the way they have compensated for the past 30 some years. So here we go... I'm hoping and praying that this procedure can finally give me some relief in my journey.

Now, on the music therapist stuff.
I. AM. AFRAID

I have utilized music my entire life to express myself. My alto saxophone literally was the way I survived a rough childhood. I have spent the last 11 years as a music therapist and 7 previous years studying for the profession. The concept that I'm losing my hearing, the doctor doesn't know why and there is nothing I can do about it makes me sad. Yes, I could feel vibrations and there might be other things in the future that could help my hearing, but that's quite hard to focus on when every day I struggle to hear my clients talk and the music they make. My own children get frustrated with me due to the constant need to ask them to repeat their statements. On a daily basis I state, "I'm sorry, I'm hard of hearing, please bear with me." I know I'm doing as much as I can. I know that I've met with every doctor possible and thank God for the insurance I have. I'm thankful for all of it,

but.... I'm losing sound and it feels like I'm losing a part of myself.

Until the next blog,

Kim