2.5 Year Update (made right after seeing surgeon in Dec 2013)

My latest video:

-Progress after most recent visit with surgeon

-Self-massage/physical therapy

-Chewing updates

-Childhood orthodontics controversy discussion

-What parents should know about orthodontics/orthodontists

-Safe physical activities to minimize jaw damage

-Messages for "professionals" treating TMJD

-Importance of documenting your journey for yourself and others

Final Step in Recovery: Splint coming out for good!

Here is my latest video/update.  The video directly previous to this one does not seem to work on the blog, but is working on youtube :)  Basically, as the last step, I take the top/remaining part of the splint out for good, and I go on a "no-chew," or "swallowing food whole" diet until my teeth come together perfectly and naturally in about 4 to 6 weeks.

As always, do not hesitate to contact me for more details, some advice, or if you just need someone to talk or vent to.  I always try to get back as quickly as possible as I know what it's like to be on the other side of surgery.  Facebook message me on our group, "tmJointVenture" or email me at tmjdkim@gmail.com

A Long-Awaited Update: 15 months!

Yesterday/Chili-Cheese Fries, a Landmark in my Recovery

Some people might say that getting past 6 months or 9 months or 15 months are landmarks in jaw surgery recovery, and they are, if you feel better on those days.  Well, I have 24 more days until my 9 months is up, and I am supposed to get to chew five minutes per meal.


For almost two years now, I have been craving chili-cheese fries, or any type of fries, but I just wanted the extra of the chili and cheese, and ultimately ranch sauce.  They have them on the menu in the café at the school I am now attending and they have taunted me every Monday, Wednesday, and Friday before my class.  Instead I always just get my strong 65 cents coffee out of the heavenly vending machine, like the New York part of my heart tells me.


However, today was different.  Something was different.  I had originally promised myself about 2 years ago when I stopped being able to chew that seasoned fries or some type of fast food would be my first meal eaten properly.  


The café was about to close, and I wavered, as they were only serving items they had left from the day.  They probably were out of them anyway, so I decided to give it a try.  I timidly walked up to the counter and asked in a quiet voice, "Do you have any chili-cheese fries left."  And the   kind woman said to me, "I can make some for you."  I didn't know what to expect as I waited on them, getting my knife and fork ready to cut and mash the fries.  I got them to go.


"Order up!"  Here they were.  Finally, but was it too early? Was I going to ruin my moment by having to cut the fries and just swallow them?  I immediately ordered some ranch to put on them as well and did not even get out of the lunch room before starting to devour the fries like a wild animal.  Everyone who walked by did a double-take, and I didn't care.  I nearly felt tears running down my face, as I used my hands, and NOT the fork and knife to properly tear and swallow the messy, greasy fries.  Every emotion was surging through my head, and I just ate the fries like I had never tasted food in my life.


-------------------
Life is different now.  I now live in an apartment, hopefully have a job I will love secured, and will be supporting myself fully, even though I am still not fully recovered.  I am making headway towards my life goals.  Everyday has its challenges, but no one said it would be easy.  I always find a way.


My first exam, returning to actual classes after graduating university in 2009, is Friday and I bought index cards to use to study for the first time in my life.  Knowing me, I probably bought them because they were colorful and will end up making my own notes on paper like I always have.


Once again, thank you to all my readers and supporters.  Your encouraging words and prayers have gotten me this far, but I will still need them, as in 24 days, I will enter into the next phase of this arduous recovery. 

Thanksgiving Day will officially be 6 months since my surgery!

New vid: Follow-up appt. update and clarifications

Information from my follow-up appt. and some clarifications on my first video.

Helpful things to bring to the hospital for after the surgery

Helpful tips on what to bring and what to leave home for your open jaw surgery and hospital stay. Also, bring your medicine and list of medicine and dosages. This video is based on my personal experiences, where I was lucky enough to have a private room.

4-Month Video Update

Almost halfway to 9 months when I can start wearing my splint less and less and start chewing! LOL, I know I look my best in this video (Okay, I look about how I feel, I suppose), but hey, I felt inspired to make a video at the moment, so I did it.  But, I owe it to everyone who suffers from TMJD and all my viewers and subscribers.

Brushing Discovery: secret for a more pleasant way to brush teeth and splint

As most of we TMJDers know, a splint is required to be worn about 9 months post TMJ surgery.  Some are quite restricting and the person does not "eat" with it in, because they cannot open their mouths. However, some, like mine, while still stabilizing the jaw, allow the person to talk and eat and open her mouth with it in.  So, it can be worn about 23 hours and 40 min a day, thus collecting a lot of food in the process.

It doesn't matter how small or large of a meal you eat... or how many, the splint will collect the same amount of food, due to its size/capacity and amount of crevices.  So, when one takes it out to brush it can be disgusting as far as taste, feeling, and looks.

I have a solution though...to take care of most of the bad feeling and ALL of the bad taste that comes with taking the splint out to brush.  My secret weapon is Listerine Breath Strips.  Pop one right before you go to brush your teeth.  First of all, it gets rid of all the bad tastes that are soaked up in your splint, and second, it sort of numbs your mouth temporarily. 

My brushing process for the "modified removable Herbst appliance":

Things needed and their Uses:

1 Listerine Breath Strip
1 Plastic or paper bowl for non-alcohol mouthwash soak

2 paper towels for surfaces for splint

1 electric toothbrush with small head for teeth cleaning

1 regular toothbrush for sporadic splint cleaning
1 allen wrench for any needed adjustments (comes with splint)
1 toothpick for tight teeth spots
2 paper cups for rinsing before and after brushing
Non-alcoholic Listerine for splint soaking
Scope Outlast for mouthwash
Toothpaste, (use your favorite)

My Protocol:

-First, Take your splint out and rinse it quickly, have a plastic cup of water ready, and put your splint in the bowl of mouthwash to soak, and immediately rinse your mouth with the cup of water.  
-Then, I use an electric toothbrush with a small head to gently clean and reach all my teeth.  (NOTE: already have the toothpaste on the brush before removing the splint so there is no time spent doing that while your mouth still tastes bad.) 
-Next, I rinse my mouth with the Scope Outlast mouthwash.  
-Now, time for the splint: (NOTE: usually only soak the splint so it won't wear out) Using the regular toothbrush and toothpaste, scrub the two pieces of the appliance gently. Then rinse them under running water.
-Then put the wet splint pieces on paper towel #1 and dry them off, especially the metal tubes and pistons, so you can get a firm grip on them to put the top and bottom pieces back together.
-Now, dry your hands for the same reason as above after moving the appliance to dry paper towel #2.
-Use the toothpick for any food in between teeth as you may not be able to open wide enough or may be too sensitive to floss.
-Assemble your fresh food-less, odorless, colorless splint, and put it back into your mouth how you usually do.


Now, your mouth feels clean until you eat the next piece of food. That is why I usually do it shortly after a big meal.  


If anyone has some more tricks of the trade, please comment!  Hopefully we can all come together and make our recoveries as pleasant as possible!

3-Month Video Update

Coming Soon


Well, I have decided to do a 4.5 month update video, because that will be the halfway point to 9 months, when I can slowly start to chew again, and start to come off the splint.  There are so many points I need to cover.  I will start from getting home from the hospital to where I am now.


I will probably make a separate video on things such as what you need to have during, and set up before the surgery/hospital stay.


Thank you to all my subscribers and supporters! 

"No-chew Diet" aka "Swallowing Diet" What to eat:

I have not chewed for over a year and a half now, counting both before and after the surgery.  However, I have never blended or pureed my food, or eaten soup, or had a milkshake, or slurped a smoothie.  I eat mostly the same thing everyone else does, but my knife and fork are my teeth.


I want to make a major post to help people in their "no-chew" epic eating endeavors as they recover from surgeries or are forced to not chew due to pain. 


A Question for everyone (about format):  Should I do it in pictures and words, or just a list?  What do you think would be more helpful?  Let me know.  Comment, email, or write on our Facebook group's wall.


Here is one example: 
Rib-Eye Steak (Medium), sauteed zucchini and onion, and loaded baked potato.

Also, it would be great if everyone could share their suggestions.  You can leave a comment or email me, and I will post it to the blog. Or as always, you can share it on our Facebook group, and I will also post it to the blog for readers who do not use Facebook. 


More pictures of meals I have eaten without chewing:

Squash, steamed broccoli and okra, pressure-cooked barbecue ribs, and flavored rice

Vienna sausage in flavored rice

Red Lobster Crab crusted tilapia with mashed potatoes and loaded baked potato

(Half-eaten :-)

Update - 2.5ish Months

Well since my Internet is finally back up and I am nearing three months of recovery since my surgery, I suppose it is time for an update.

I think the word that best describes how I have been feeling is deflated.

I knew this recovery was going to be rough and was possibly going to drive me to insanity. Well, I was right, even though I had hoped I wouldn’t be.  Everything seems to be going on schedule, which is why I can’t understand why 9 months of no chewing has suddenly been indefinitely extended.  I am scared to death that I may never get back to my old self or recover fully.  I feel like the life has just been sucked out of me.

Yes, I am in less pain, though still in a lot of pain.  My ears do ring less.  And my neck has much more mobility.  It’s just the  l e n g t h  of this recovery.  How long will it be before I am out of pain and in silence and feel 24?  I don’t know. That I don’t have a date, like I did—a countdown—is causing me to feel trapped.  I am so restricted as to what I can do and what I can handle.  I get exhausted so easily.

I just don’t feel good, at all.  I can hardly stand going in a restaurant, and I wish food did not exist.  I want to lie down.  I really miss singing.  I can talk okay with the splint, but I don’t like the feeling of it.  I like to watch TV and movies, but not all day everyday.  I can’t focus enough to read.  I can’t drive because of medication.  I just want to get on with my life and it is a fact that it will be a long time, possibly two years before I have any sort of normalcy.  For instance, eating a salad and sleeping in a bed.

I had the timeframe in my head as 9 months, and now that that has changed I just feel like this will never end.  I wish I had a better update and I know it’s a little whiney.

People always say things could be a lot worse, but I always say, well they could be a lot better too.  I guess it is just really hitting me that I am a long, long way from the homestretch. 

I really just hope to some day, before 2013, to get back to normal: eating a crunchy taco and laughing with some friends, going to sleep that night in my bed and waking up pain-free.

Some say "splint". I say "modern art".

Sailing Without Wind

Well, at first, on May 24, the day of my surgery, I left port. I was going to sail around the world. The first weeks were filled with nervousness, and excitement set in after I realized this was really happening, the surgery was over, and I was on the road to recovery. I would be better in no time.

The wind was filling my sails, and I was pushing full speed to the end port.

However, now I am in the doldrums, where it is hot, sticky, no wind, and boring—I have just realized how LONG this is ACTUALLY going to take.  Yes I am slowly progressing as there is a slight breeze (happy events in my life) here and there slowly pushing me along, but overall, it feels like little is happening.

Maybe I am making more progress than I realize.  However that’s the rub—I am NOT realizing it. 

I feel as though I am stuck with no emergency motor on my boat.  To add to it I can’t find my colorful spinnaker to possibly speed me up.  I have not written a post in a while and this is why.  I have to find something to get me going again, to help me fight through this.

I have a long journey ahead of me.  I just hope I can gather the strength to make it though the doldrums and make it to the end port where the new Kimberly will be waiting on me. 

I will find a way.  I always do.  

Update - Time, Healing, and Physical Therapy

Well, today, my fourth post-op physical therapy appointment, my physical therapist said my muscles were the loosest they have ever been since I have been seeing her, which was about 5 months in 2010 and now.  That is amazing, and I was elated.  Last year, when we were all perplexed at was wrong with me, my muscles would get better and worse, and worse and better.  My hopes got up and hopes got crushed, until finally they were deleted altogether, and I just stopped going, as it was no help. 

My discs were out of place and no amount of physical therapy and no splint on earth would fix me.  Surgery was the only option.

Now I have had the surgery.  It has been a month.  My muscles are finally starting to behave and my pain is slowly, but surely, retreating.  The pain has won many battles with me.  Pain was actually undefeated. But, with the help of the surgery, and the help of prayers, healing is making a late comeback, and right now, it looks like it may win the war.

Even though physically I am doing great—honestly I am almost certain I am ahead of what is to be expected—I still am extremely overwhelmed and daunted by the scope of the recovery, 8-15 more months of not chewing.  Originally, I thought that this would be easier, since I would be getting better, and I had already gone without chewing for a year and a few months while getting worse.  But, I am still having a hard time not being “normal” and finding the strength to force myself to perform the duty of taking in calories.  

I am not sure if time is passing by quickly or slowly.  I really think it is just… passing.  I just know that 8 months seems like forever right now and 15 months to 2 years seems like an eternity. 

Right now this recovery is just as I remember the SAT to be.  First, I learned how to work the problems, figure the strategies, and master the material—the physical stuff. Then I had to work on speed and endurance to do everything for which I worked so hard in the allotted amount of time.  Right now, it’s all endurance.  It is a certainty that I am getting better physically, but I must believe I will achieve the mental strength, skills, and stamina to build my endurance, to finish all the problems correctly in my right amount of time.

On "Eating"

(Pre-op)

I am in a bathroom stall at a pizza restaurant.  All of my great new friends I had made that semester are sitting outside talking, laughing, and enjoying the famous pretzels of the restaurant.  There is a pretzel for me too of course that they had ordered.  No, I am not in the bathroom to use the bathroom or check my hair and make-up.  I am in one of the two stalls whimpering, panicking, trying to spare my friends the scene of me having a breakdown at the occasion.  I ordered an appetizer as well…and a dessert, things that I COULD eat—such a rarity at a pizza place, but it’s been over a year and it is amazing the food I can swallow.  Of course, it doesn’t come out the same time as everyone else’s food, and I am left sitting, watching everyone else eat what I am craving.  As my stomach rumbles I just want to scream.

I’m sure this is a common, nearly maddening, scenario for many sufferers of TMJ disorder, as it has been for me.  So much of our social life and networking and fun revolve around food and drink—as well it should—but it can be the darkest of places for someone who cannot chew, someone who has to order the loaded nachos with no nacho chips.

This is just a glimpse into the psychological world of TMJD, just a fragment of the dark, frictionless well where you are at the bottom.  You know there is light at the top.  But, how do you get to it, much less see it?  You cannot even hold your neck far enough back to look up to the light.  You are stuck.  You are only limited to what is inside the well, as far as your food choices.  It’s quite narrow. So many times you have to “eat” the same foods repeatedly.  But to tread the water, to bear the pain, while eating it, it is hard to enjoy.  It is now a chore.  It is now something you have to do to stay alive.

Eating with TMJD is treading water in the middle of the ocean, hoping that random fishing boat will find you and give you relief.

But, for me, a rope—surgery—is coming down the well to pull me out, it lowers slowly and it will be raised slowly.  It will take me ~15 months to get to the top, to recover from surgery, but I have been stuck and suffering for about 15 months, falling deeper and deeper.

(Post-op)

Now the rope has reached me!  I am on the way up. The well has gotten narrower.  Because of my splint, my choices of food are more limited, but I am sure it will widen, as I get used to holding fast to the rope.  The light is getting closer and closer.  I get stronger each day I hold on.  It takes about 9 months before the well widens vastly and about 15 before I reach the top.  My muscles will be sore from holding on for so long, therefore it will take me 9 more months to regain my full strength.

However, since I trod water and held tightly to the saving rope for so long, I will be stronger than ever.  Every taste will be richer, every movement will be more momentous, and every feeling without pain will be fortunes.

tmJoint Venture has a Facebook group

Check out tmJoint Venture's Facebook group.  The name of it is tmJoint Venture, and it has already been a huge success within the first 12 hours, with already 11 members.  It is quite a mix.  We have some professionals, some people who have chronic TMJ pain, some people who are looking into surgery, and some who are recovering from surgery.


The purpose is the same as the description of this blog.  It is an open group and feel free to give and get advice, support others and get support, simply vent, share your story, and invite others.  


We all know what one another is going through, so feel free to check it out.  I am always open to ideas to make the group better as well.  There are also other great groups on Facebook I have found to be informative in case you want to try more than one.

A question for TMJDers...

For those of you who come upon my blog who are suffering with or recovering from Temporomandiular Disorders, would you be interested in me starting in a Facebook group or another forum where we can share our stories, exchange advice, and just have a place where we know other people are going through the same thing, and possibly use it as an educational resource for professionals? 

I would be delighted if you would leave a comment letting me know...or email me.  

Professionals or anyone who may be reading...you are welcome to comment as well.

Two-week post-op visit: Everything is Different

Well, it was 2 weeks since the surgery this past Tuesday and I have slowly, but steadily, gotten better, and had my first post-op visit Wednesday.  There is really no time frame, just as long as continue to get better.  Everything is going well so far.  It should be a month or two before I am completely out of the surgical pain.  It is a different pain.  Everything is different, in fact.  

As for my inner ears, the ringing and chirping is still there, generally better, but different, it should get better as my spasming muscles loosen up with physical therapy which I will be starting a week from the follow-up visit.  I will start out at 3 times a week and go from there.  I am hoping this time, it will not be all for naught, rather it will be a catalyst to being closer to chewing.  Also, the synovial fluid still needs time to balance out in the joints.  Improving the mobility of my jaw will move that along.

Again, everything is different.  Yes, I am going to the same great physical therapist who can feel where my pain is without asking, but this time, I have a different jaw to work with, one that has the possibility to get better, to open, to close, to move side to side, to one day chew a taco.  Everything is different, every visit will not be just another shot in the dark.  Everything is different, I will not futilely hope that she will somehow act as a magician and somehow release a muscle to get rid of the then unbearable noise in my ears.  This time my ears will improve with each visit.  If they do not, I will hope they will not be volatile when I start chewing again.  Everything is different.  I really don't think that I will go deaf momentarily when I chew a few times during my first meal in about 9 months.

Speaking of 9 months no-chew/6 months soft-chew/9 more months very careful-chew,  I will say that I am sometimes overwhelmed by the scope of the recovery and find it daunting, but I tell myself instead of painfully plummeting into the valley getting worse and worse every day, I have finally made it to the bottom, drank the healing water of the cool mountain stream of the valley and am now heading up the other healing side of the valley.  Of course, panic, is sometimes unavoidable, but I get through it, I've gotten through almost a year and a half of constant panic.  Again, everything is different.  I only have panic sometimes.

Progressing Pictures (Incisions Healed)

Right Ear (1 day post-op)

Left Ear (1 day post-op)

Almost There! Left Ear 17 days

Gone! Right Ear 17 days

The outsides looked great from the beginning but they were clogged significantly for about 4 days.  Of course I was extremely worried after everything I have been through with my ears...after all, this all started with my ears.  But the body did it's own healing and cleaned the dried blood out of my ears somehow.  

Beginning Post-Op and Recovery

Hi everyone,


Well I started this blog 10 days pre-op, so now I am restarting it 10 days post-op.  As I sit here in my recovery recliner (just a new Lay-z-boy crammed into my room) I am still having a good bit of pain and am just getting some solid food in me as well as getting used to walking every hour and cleaning my splint three times a day. I am mostly off the pain medicine.  I'm really not sure why, because I definitely need it, but my doctor says my body needs to recognize that it needs to heal...or something?


I had a bilateral disc repositioning and repair, using surrounding tissue, where fibrosis was also cleaned out.  Since I had not chewed for over a year, my surgeon was surprised at the quality of the discs for how long I have been in this situation.  The texture and thickness were both good, but he did reinforce them a little with surrounding tissue.  And the discs, which are basically the size and shape of guitar picks, are held in place by fishing line-like sutures.  The incision is kind of the inside of my ear, plus it has been 10 days, so it it almost gone, though still sore.


The hospital and staff were great.  All private rooms and brand new.  

Thank goodness that bandage only stayed on 24-hours! Itchy, itchy, itchy!

As soon as I woke up in the recovery room though, I was in the worst pain I had ever been in.  The pain continued and my blood pressure rose, so I had to stay two nights instead of one.  Also, upon intubation my throat was scratched a bit, which had to be repaired, so I had an awful sore throat for about 7 days.


It has been really tough so far.  I'm not going to lie.  I have spoken to so many people, many of whom said they were immediately out of pain.  I wish that were me, but it's not, so slowly but surely I will recover and be pain free.  


The surgery supposedly worked, now I just have to heal and get out of pain.  I just realized earlier that I'm not even sure what that feels like anymore.


Also, thank you to all the people who have given advice, prayers, and have been reading my blog so far.  I love you all.

Preparing for Recovery

On Ears (Ringing, Chirping, Tinnitus):

January 23, 2010, I wake up, my ears are ringing—nothing out of the ordinary for someone to wake up with some temporary tinnitus.  Well, I thought my ears were ringing all day, but ignored it.  Surely, surely, it was in my head that they were ringing, and I would lie down to a quiet night’s sleep that night, like I had done every night prior for approximately 20 years.

No, not this night, and not a night since.

Well, I took a prescription sleep aid and went to sleep.  I wasn’t in any pain and had never had an ear infection.  Maybe this was my first.  After ten days passed, the constant ringing was driving me to the brink of insanity.  I could not look in the mirror and see myself.  All I saw was ringing.  What was wrong with me?  With some regrettable research on the Internet, I learned that constant ringing was caused by hearing loss. I was 22.  I had never shot a gun, worked in a factory, or had a job as a DJ.  Yes, of course I listen to an ipod, but everyone my age does.  That had to be the culprit, but everyone, including my doctors assured me it was NOT.  So, what was it?  There had to be a cause.  I bit into a spring roll after visiting an E.N.T. for the first time. Owwwww.  I couldn’t eat it. 

Now the ringing was causing me to grind my teeth from all the stress of it—or so I thought!

Days passed, weeks passed, months passed, I saw more doctors in a month than I had seen in my entire life.  I could no longer rest and I was in excruciating jaw pain 24/7.  I was curled in a loud ball all summer.  I cared about nothing I used to.  Anything from my “former life” just made me sad.  I would never have a moment’s peace again.  I cried, I prayed, I begged at doctors’ offices, I did not sleep for multiple and consecutive nights frequently, worsening the situation.  One professional says to come off all my medicine, while others prescribe more and more.  I had a hearing test where I had perfect/better than average results.

I asked my new E.N.T. while whimpering, “Well, why are my ears ringing then?  I can’t do anything.  It has taken over my life.”  His answer was just that simply being alive could cause ringing in the ears.

Finally, I made it to a neurologist in the fall of 2010, where I was diagnosed with Oromandibular Dystonia, prescribed a benzodiazepine/muscle relaxant for the condition and scheduled Botox^TM injections.  Finally, the combination gave me some relief, and in physical therapy, we were able to find some trigger points that made it worse and better. 

It was all related to my tight jaw, neck, and shoulder muscles.  But there was no way to truly get rid of it.  But…I did have hope, hope, because tinnitus related to TMJ is the only treatable kind.

Just some occurrences:

-With the fan, or white noise, while going to sleep, the ringing would escalate.

-Turning my head certain ways would make it spike.

-It totally corresponded with my jaw

-At least twice in restaurants I have temporarily completely lost my hearing.

My surgeon tells me that I have about a 75%ish chance of getting total relief from it post-op and that he has never had a case (out of 4,000) where it has gotten worse.  I would love to have the ringing gone forever, but now that it is manageable with the medicine and Botox^TM I feel I would be able to lead a normal life if my jaw were totally well.  However, to go through such a major surgery and RECOVERY, I really want to get back to Kimberly.

Right now my left ear chirps and my right one rings or beeps. 

Also, to all the oral surgeons out there who say that ringing in the ears is probably caused by something else when a patient is presenting with a jaw problem: you are most likely wrong, (unless it is a 70+ year-old or someone with a known cause). I know from experience.  I have been to two of the top TMJ surgeons in the country—ask them if it is rare.  Don’t say tinnitus is not your specialty.  If you treat TMJ, you also treat tinnitus.  

A Thought:

In hopes of a new specialty in the medical field

Well, my brother graduates medical school tomorrow, and all of the to-be doctors will take the "Hippocratic Oath".  I really hope they all remember it and mean every word of it.  This is my favorite part:

"I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery."

I really hope some doctors are reading this blog.  Well I know at least one is ;) , because I, next to being support for people in similar situations, want tmJointVenture to be a source of information for professionals in hopes that one day, someone on "Match Day" can open their envelope and say, "I will be doing "TMJ surgery at [enter name of hospital here]" for his or her residency.  

On Stolen Time:

(1 week until surgery :-)

What can I say about stolen time?  I know there are many people out there who have suffered much longer than I as well as many people who will never get relief or be able to afford it even if it is available.

But, I also know that there are a lot of 22-24 year-olds out there that are in good health, even 70+ year olds that are.  One day I was in perfect health and the next I was not.  I was 22 then and I am 24 now.  So much time has been spent going from doctor to doctor to specialist to specialist to surgeon to surgeon.  So much time has been spent on waking up in unbearable pain, unable to get anything done, unable to complete schoolwork on time.  So much time was spent on waiting until the next useless appointment, physical therapy, splints, and medicines—all eventually proven to be futile.

Who? Me?  Disability Accommodations? Yes, that’s right.  It was hard to identify as “disabled” even though I truly was.  My old self was dead.

Ultimately, I feel like so much time has been stolen from me because of the pure LACK of knowledge of the tempero-mandibular joint.  NO doctor knows about it and NO dentist knows about it.  It is in-between everything.  Well, it is above the neck so an ENT should cover it? NO.  It is a joint, so an orthopedic surgeon should cover it? NO.  It is on your face, so a maxillofacial surgeon should cover it? Yeah, if you need total facial reconstructive surgery, but NO, they will happily extract your wisdom teeth.  Oh, so that leaves…uhhhh…hmmmm…well, a very small esoteric group of MD/DMD’s who only treat this complicated joint and its crucial disc placement that many sufferer never find.

I believe I am pretty accurate when I say that there are about 5 TMJD specialists in this country.  I have seen two.  I have also read in multiple places that about 90% of TMJ sufferers are woman in their childbearing years.  Maybe that is something to use in research.

The first doctor I went to put me on a decongestant and told me to see an ENT, because my first symptom was ringing in the ears or the dreaded “diagnosis” of “tinnitus”.  At the visit I neglected to mention I was having some jaw pain.  Who would think the two are connected?

When I went to the first ENT, he said it is highly unusual for someone as young as me to have ringing in the ears, so he just knew it had to be viral infection of the inner ear and put me on prednisone.  Well, I only got worse.  Then he wanted me to have a hearing test.  Okay sure, of course.  He leaves, my dad and I think I am going to have the test.  No, we are lead to a room with a scheduling book, and the next available hearing test is a week away. Unacceptable.  That was the end of that ENT. 

Thankfully, we got to a better Ear, Nose, and Throat specialist, where I was able to have a hearing test (perfect results) and he was able to refer me to an oral surgeon, who then referred me to a physical therapist.  Did anyone think to take a full MRI of jaw or ear to see what was going on?  When I think about all the dilly-dallying and waffling and waiting and trying useless treatments on such a common thing people for which people suffer, it makes me sick.  There should be enormous amounts of research put into this and a streamlined path formed to a treatment plan resulting in a cure and recovery. I hope this my story on this blog and anyone who reads it going through the same thing can comment their story and as much information can get out there as possible. 

[Doctors/Dentists don’t have it right now, at least not enough of them.  It is up to all of us suffering to muster the energy to give them every shred of knowledge they could use.  What is your situation?  What works?  What doesn’t?  What types of doctors or professional have you seen?  Anything that will help them.]

Maybe I just didn’t look like I was suffering enough on the outside when I went to the appointments, but inside I felt as if I were Job in the Bible.  Maybe it is childish to think this, but I always wanted to say… “Just do your job, and fix me!!!!  I don’t care what it is called!  I suffer so much everyday—I have no quality of life—no one has an answer—PLEASE HELP ME”

I wish the first doctor or one of the ENT’s would have delved deeper into my symptoms and said, “Here’s the guy (or woman) to see (meaning the MD/DMD I am having surgery with) to get you better.”  

It would have saved so much time. Much less time would have been stolen from me. 

You only live once, but I can function a bit, I do what I can to make the best of this time, I got through a year of grad school, made some great friends, and got an unexpected education because of this illness, and I will make the best of recovery; I plan to learn how to sew, keep blogging, start playing piano again, and plan my next step in this journey on earth.  Things have not gone at all how I have planned,

because, after all, this is, in fact, LIFE.

1 MORE WEEK!