My Life with TMD

Answer to a Question

2011-02-08T02:34:00.005-05:00

Hello,

Lykia, thank you so much for your question. In regards to neck pain, yes, I have had and continue to have neck pain. I've been told this is the result of the clenching position my jaw tends to naturally land in. I attempt to not do so but for some reason it "rests" like that. Very frustrating.

Anyway, this puts pressure on my neck which causes soreness and the vertebrae to go out of whack. I see a chiropractor for this and it tends to help. My oral surgeon also made a splint for my jaw that I wear day and night. This splint keeps the jaw joint from fully resting and creates a 3mm gap. My neck and jaw pain has improved from this.

I did not experience your other symptoms of facial drooping and the like. After surgery I had some facial paralysis for some time, but this was the result of swelling and improved with time. I do still have a tingling sensation throughout the left side of my face.

My advice would be to find an oral surgeon (DMD, not DDS) who specializes in TMJD; make sure they have plenty of experience in the treatment of this condition including surgery. You may also want to consult a neurologist to see if your symptoms could be related to that.

Also, for everyone, I posted the wrong email. If you want to email me, you are welcome to do so at: aandjfriends@gmail.com I don't know why I put "yahoo"!

Almost 8 months post op; wow!!

2011-01-14T01:15:00.002-05:00

Hello Everyone,

My goodness, I am SO sorry I have neglected the blog for this long! Life has been so busy lately with job changes and the like.

I am doing well in my non-TMJ related life. For those who asked, yes, I am in the midst of making some career changes. At the moment I am working a regular, poor paying job as a nanny to a beautiful two year old girl. This has been a good opportunity for me to appreciate that I do not do this for a regular living! While I LOVE being with this little girl, I miss the challenges, blessings, and opportunities to serve as a pastor. On January 24th, I have an interview for a chaplain residency position at the largest hospital in our area. Please, if you are able, say a quick prayer (or two) for me. This is my passion and I have been dreaming of doing this for many, many years. I am both excited and nervous to begin this part of my journey. If this particular hospital does not work out, I will be applying to others with the hopes of getting in to a good program.

In the TMJ world, things have been up and down. I am certainly still much better than I was prior to surgery, but some days feel like I have taken a thousand steps back. Last month I was kicked in the jaw (along one of my incisions) by a toddler at the daycare (used to work there). This seems to have set my recovery back quite a bit. Since then, I have had popping, clicking, and crunching noises return. I fear at least one disc may be displaced, but couldn't be sure without seeing the doctor.

My pain has been increasing as well, but of it I imagine is muscular. While I have been taking the steps to keep my stress at bay in the hopes of preventing the muscle pain, sometimes it just comes on no matter what! The plan at this point is to try and find a physical therapist willing to help me. I don't have insurance so cannot get a referral and payment would be a bit tough. I'm praying I can find something.

Other than that I really am doing well though. I know it sounds funny after all that but it is true! I am still better than before surgery and pray any further aggressive treatment can be put off for a long time. Whether that is the case, I don't know, but right now everything is one day at a time.

So, that is it for now! I will try and do better about updating, I promise. Since my jaw is giving me more grief I am sure it will be a loud and unwelcome reminder to keep you posted. *smile*

-Laura

Oh, and Melissa, YES! I would love to talk with you further. You are welcome to email me at: aandjfriends@yahoo.com if you would like to keep in touch. I will be praying for you and hope your appointment went well.

3.5 months Post Op

2010-09-06T13:59:00.002-04:00

Hey everyone,

So sorry i've been gone for a while. I just moved from PA to WA state and have been running around like a crazy person. A bit stressful but a really good move. I'm so happy to be with my family again!

Anyway, it is about 3.5 months post op from my bilateral arthroplasty. Things have been fairly good. I can move my eyebrows again, though still a bit weak on my left side. I can feel almost my entire face which is awesome! I still take daily motrin (800mg pills) and soma, though can limit it to once a day. This is more due to finances than anything else. I lost my health insurance with the move and don't have the finances to pay for anything (and I mean anything) until I get my first paycheck.

The big thing i've noticed is the pain. It is obvious that this surgery goes through your major facial nerves. Of course I knew this going in but didn't quite know what to expect. I get that horrible tingly/itchy sensation all the time, going up into my scalp. Many times I have these itching spells and look like I have lice or something! The other issue i've notice is I still have quite a bit of pain/discomfort. My jaw feels tense and is especially sore on the left side. I use my therabite several times a day, which helps some with the pain and helps me to maintain my awesome opening. The surgical sites are still very tender to the touch in terms of nerves. My neck has tensed up more since I stopped PT, though i'm trying my best to do home exercises to relieve it. I use heat a lot too to try and help.

What have others experienced at this stage in their recovery? At times, family and friends have a hard time understanding why I still am not "better". I've explained to them that i'll never be completely better though they have a difficult time grasping it. I think they thought this would be the miracle cure, no matter how often i've explained to them it isn't. I still think i'm better than prior to surgery, though definitely some days I don't feel it is enough. I think the stress of leaving my job, moving cross country, and the lack of finances has definitely added to my problems. I'm trying my best to work through the stress so I don't hurt myself much more. It wasn't a great time to move in terms of recovery, but the stress of my awful work situation was so much more. Gotta love the rollercoaster of life!

Okay, so maybe I did!

2010-08-02T09:40:00.002-04:00

Sorry everyone, I know, I know, I promised to update soon and didn't! Things have been a bit nuts around here. I am moving back to Seattle so am busy saying goodbyes and packing. I leave on Friday and there is SO much to do!

I am doing pretty darn good with my recovery. I am now about 9 weeks out and am still maintaining between a 35-42mm opening as long as I keep up on my exercises and don't get too stressed. After I gave my notice to the congregations I had a doctor appointment and the stressed caused my opening to go down to 32mm. Lesson learned; exercise, exercise, exercise! That therabite is a miracle worker, i'm telling you!

Pain wise it gets better and better. I am still struggling with what i'm pretty sure is scar tissue, it feels like I have tight bands connected from my skull to my jaw joints. Each time I open or move my jaw side to side they pull. I'm sure this will go away with time and again...exercise. When I wake up I usually hurt quite a bit from the evil clenching, but once I get the therabite out and take my 800mg motrin and the muscle relaxant it calms down.

The stress of moving has definitely taken its toll, but I know once i'm able to relax a bit i'll see improvement. I was doing better before the move, that is for sure.

One of the cool things is I now have movement in both eyebrows! They are still weak but keep improving. I can also feel almost all of my face now, but have pin prick type feeling in my left cheek and some of my right. This is an awful feeling but again, will get better with time. My doctor keeps reminding me it takes a while for things to get better.

I will update again (with all the pictures missing) as soon as I am settled in Seattle. Hopefully next week I can get this done. Thank you for your patience with everything. I'm glad to know people still come to this blog to check in and to find information.

I didn't fall off a cliff! :-)

2010-06-01T23:19:00.002-04:00

Just dropping in to say i'm soooo sorry for the lack of updates. I had a parishioner pass away on Thursday and have been busy caring for the family, preparing for the funeral, and of course, recovering from the surgery.

The funeral is tomorrow. Please pray for the family and that i'm able to lead the service well. I'm a bit nervous as my pain is still bad and I tend to mess up my sentences sometimes due to probably the swelling, nerve problems, and meds.

I've been taking pictures and have PLENTY to update you all on. I promise as soon as i'm able I will do a big long update.

Thank you for checking in, and again, please pray for this wonderful family. The woman who died was such a special person. I hope i'm able to do a good job in honoring her life.

Day 8 (One Week Post Op)

2010-05-27T21:48:00.008-04:00

So, it is a week since I underwent my arthroplasty. In some ways it feels like it really, has only been a week. In other ways it feels like an eternity!

The pain is a bit better today, I guess. I still feel like my head is in a vice and every itty bitty part of my head is bruised. I just can't find a comfortable position for my head and it is oh so frustrating.

My facial paralysis and numbness is still there. I cannot lift my eyebrows and my cheeks are pretty numb. Also my left eye is still weak; I especially notice this when I try to wink (cannot be done) or squeeze my eyes closed. You will also notice in the pictures my smile still isn't quite there and one side is more swollen then the other.

On a good note though I do know things are improving. With time the bruising, swelling, and joint pain will go away. I feel my personality is coming back some. I am able to do more and took my sweet Caroline out on a decent walk this evening. Tomorrow I even plan to visit a dear parishioner who is not doing well after my physical therapy. These are all signs i'm doing better.

I am beginning to get irritated with my diet. I still am timid about chewing as it hurts too much. I can mush things with my tongue but that is about it. I'm finding after a week of liquid and mushy food, i'm bored. The soft diet I was on before surgery seems glorious compared to this! Applesauce and tomato soup just are no fun. Today I made bean enchiladas and mushed it up real good. This was so exciting to me, especially because it was able to be "chewed" with my tongue. That was the most flavor I have had yet; i'm so glad there are leftovers

So that is it. My friends are gone now so it is back to me and the furkids. I'm very thankful for all the progress i've made in the last week and look forward to seeing what week two brings!

Day 7

2010-05-27T00:24:00.004-04:00

Ahhh, the bruising continues! As you can tell, the left ear area is really looking pretty ugly. My pain today was pretty bad due to the bruised sensation. Every nerve throughout my head; side, forehead, top, back, etc...it all hurts at the slightest touch. I was awake all night due to this, even to the point of seeing the sun rise. I refused to look at the clock which is what I think helped me make it through today!

I had physical therapy today; day 2. It went really well, and I was able to open to 32mm at the end of my appointment. Even better, I reset the therabite this evening to 35mm and was able to do it! This is the minimum normal and I am so happy to be there. My side deviations are getting better too. I was able to deviate to the left 10mm and the right 8mm. Normal is 15mm.

The pain was bad throughout the day but it went fairly well. I have two friends from my seminary days who arrived this evening to visit. They are pastors in central PA as well. One lives an hour away and the other about 3. It is so good to see them and even though I hurt they were able to help take my mind off it a bit.

So, that is my update for tonight. A bit short but I am tired and praying I get some sleep this evening. It is hot hot hot over here so that isn't helping. Praise God for air conditioners; I don't know what I would do without mine. As a native Northwesterner heat and I do not get along. I'm praying this crazy heat/humidity wave goes away for a while!

Day 6

2010-05-25T21:17:00.008-04:00

This is how I spend most of my days, wrapped up in ice packs! These handy covers are leftover from my three foot surgeries. All I have to do is velcro them together and they wrap perfectly around my jaw; love it!

Today just call me Bruiser! The bruising is getting nice and colory. The pictures do not do it justice, as they are much brighter in person. While i'm thankful the swelling is going down, I now feel like my head is stuck in a vice. It has not been a pleasant day pain-wise and nothing seems to keep it at bay.

The good news is I can still open about 30mm today with the therabite. I'm so grateful that my opening is so good so early in my recovery. As i'm sure i've mentioned, the goal is 35-40mm with no pain. Looking at where i'm at, I think this will not be too difficult to meet once the surgical recovery is complete.

One of the more embarrassing side effects from this surgery that i'll only share for the benefit of others who may go through this, is drooling. Yes, it's gross but is very much a part of my life at the moment! Because of what I would assume is the weakness in my facial nerves and muscles, the drooling is out of control when sleeping (and sometimes accidently when awake!). Please, if you go through this surgery, before going to sleep grab a towel and cover your pillow. You will not regret it!

Today I got out with my dog for mini walks around the block. I'm able to get out a bit further than previous days which I am happy about (as is Caroline). I do get pretty dizzy though so I have to pace myself. My ears are still pretty plugged, with the left ear being the worst, so the vertigo sets in easily.

Other than that, I have been catching up on the show Six Feet Under. I'm almost done with season 1 and cannot wait to start season 2. I also have several movies now to watch thanks to my Aunt and Netflix. It is nice to take it easy and enjoy some good shows.

Which is exactly what i'm going to do now! Until tomorrow...

Days 4 and 5

2010-05-24T23:13:00.010-04:00

Day Four

Morning

Evening

Day four started out a little rough as you can tell by the pictures. The swelling in my eyes became a bit crazy and I had a hard time seeing throughout the day. I'm still having some double vision due to the swelling but it is getting better. My left eye tends to get a bit lazy which is part of the problem. Once I have better control over the muscles and nerves I have a feeling my vision will be much more clear!

Day four was one I found had the most progress. As the day went on, my energy began returning. I have found with previous surgeries this tends to be both a good and a bad thing. While it was good I wanted to get up, walk around, and such, the body just isn't always as ready as you think. I insisted on doing a lot of things, such as the dishes, cooking for myself, and getting up for anything I wanted. My dog also decided she had had enough of vacation and wanted to return home, so she insisted that I be the one to take her out for potty breaks.

What ended up happening is my body crashed. By the end of the day I just couldn't move anymore. I'm thankful though for the progress that was made. My swelling went down further and I began having little "pops" in my left ear, signs that my hearing should be returning.

Day Five

Day 5 has been tougher than day 4. My friend had to go home today so it is the first one on my own. I'm so grateful for all her help and for the time to catch up (she is still in seminary). We had a nice time and it was a gift to have someone on hand to help with wound care, dishes, driving, and even laundry (thanks Andrea!).

Physical therapy really took it out of me. It is an hour drive each way to get there so PT is always a long day. Because the incision sites are still so new, my PT did not want to do any tens or ultrasound as it poses a risk for infection. So, we stuck with ice and range of motion. The good news is I was able to open 28mm, a good 10mm more than before surgery! Normal at minimum is 35-40mm, so i'm on my way.

I was already in a great deal of pain before arriving, and by the time I left I was done! My PT's are so happy though with my progress and had a great time calling me "chipmunk face" and other such terms of endearment. They even commented on how swollen my ears are, to the point they are flattening against my head. While this is true, they should have seen me a few days ago!!

After PT we had to run to the store to pick up prescriptions. This extra trip was another step in my road to exhaustion. I ran into a parishioner which was nice, though i'm sure he was wondering what I was doing out. We then went home and on the way picked up flowers my mother had ordered for me. They are so beautiful! I also got a package from my Aunt with a bunch of movies which I cannot wait to watch. Such a nice day full of surprises!

Once I got home, I took my pain meds/antibiotics, did wound care, took the dog out, and got some ice. I then laid down and took a nap for the next few hours. The pain today has been deep muscle and bone pain, the kind you would generally expect with this type of surgery. I think all the talking and exercise is what caused my problems. While it is good and expected of me to do these things, I believe I need to take it a bit more easy the next few days.

So, that is it for now. Progress is being made and everyday is a little better. I will try to update again tomorrow depending on how i'm feeling. Oh, and sorry for the low quality side pictures from today, I just couldn't get my camera to cooperate!

An Hour After My Last Post

2010-05-23T01:17:00.001-04:00

Wow, the bruising around my eyes is getting much worse. My left eye will only open about halfway now. Looks like i've been in a bar fight!

The First Three Days

2010-05-22T23:30:00.007-04:00

So i'm finally going to try and blog a bit about the surgery. I'm still in quite a bit of pain but am laying off on taking more meds until I get something on here!

Below are some pictures from surgery. I'm sorry they are not better but it was the best I could do. I had both sides done but it is kind of hard to tell because of the swelling and the fact I was taking the pictures myself. I really couldn't tell what I was doing!

The surgery was scheduled to start around 1pm but didn't begin until around 2ish (I think). Total the surgery was around 4 hours and 20 minutes, give or take. It was expected to take about 3 hours but we knew going in it could be longer.

Everything went as well as could be for the surgery. My doctor said the disks were in decent shape and they were able to reattach them on both sides. The stitches look amazing so I know everything will look great once I heal. I'm so grateful I have such a skilled surgeon with an excellent team he trusts.

When I awoke from surgery, the first thing I remember is a lot of pain. It felt like hot knives being driven through my face. I cannot remember another surgery where I felt this way. Thankfully the nurse was on hand with dilaudid and continued to pump it into my system. They were not supposed to give me high doses at a time due to the fact I was still coming out of anesthesia. However, because the pain was not able to be controlled she eventually called the anesthesiologist who gave consent for a higher dose. Once that hit I was fine. Unfortunately, I wasn't able to keep my sats up without oxygen so I stayed on it throughout the night. In the morning I was able to come off though. This was good because it was beginning to look like another night in the hospital may be on the table!

Day One

The night in the hospital was pretty rough. I wasn't able to sleep hardly at all. My pain would go down for a short period of time, allowing me to pass out, only to be woken up again by a full bladder, pain, or a nurse. I just couldn't get comfortable with the air pumps on my legs, tubes, ice packs leaking, and of course the pain. I was grateful when morning arrived!

Day Two

A side view (I was a bit drugged and couldn't get the other side!)

Day two started out with finally getting the oxygen off and we moved on to oral pain meds. I was worried about the switch because the night was so awful, but thankfully everything worked out fine. I realized once the morning shift came in I hadn't eaten since Wednesday night (about 40 hours). Suddenly I was starving!

The nurses told me I had to order food on my own and they had a room service menu. I am on a pureed diet so I knew my options would be limited. I called the number and, barely able to speak, did my best to get my info across. The lady on the other end said I needed my nurse to still put the orders in. So, I called back to the nurses station and they said they'd look into it. I didn't get a call back which I learned throughout the night usually meant nothing was done. I fell asleep for a little bit then was awoken by getting my blood pressure and such taken.

Thankfully, I was then able to order some food and opted for applesauce and yogurt. I was able to eat the applesauce but could barely get a couple spoonfuls of yogurt. My stomach was just not ready.

The rest of the morning went smooth and by 12:30 I was discharged. I had to go to my doctors office before heading home so my friend and I journeyed there. Unfortunately his office was packed due to my surgery pushing appointments back and his in office surgeries that morning.

About twenty minutes into the wait, I started feeling funny. I went up to the receptionist and asked her if I would be waiting a while. She said probably and I all of a sudden felt extremely weird and asked her if there was anywhere I could lie down. I started shaking and crying uncontrollably, which was both embarassing and felt out of the blue.

She took me to the back and they figured my blood sugar dropped from not eating. I was also in pain, hadn't slept, and had just been discharged, so all of that topped on each other through my body into a whirlwind. I had some juice and about 40 minutes later calmed down. I think it freaked us all out!

My post op appointment went well after that. He did find that even with the plugs they put in your ears I got a lot of blood down my ear canal, especially on the left side. My hearing is very minimal at the moment due to the insane swelling. I can't really hear at all out of the left and just a bit on the right. Also, I have paralysis of the forehead all the way to my eyebrows and a bit on the sides of my eyes. This should be temporary, only about 1% of cases is it not. The reason for this is all 5 major facial nerves run along your jaw line. It is to be expected you'll come out with some kind of temporary paralysis. It just makes me feel like I had botox!

Outside of chipmunk cheeks and those other issues, I am doing fine. The pain is for the most part able to be controlled. The drive home that day was a bit rough, but made better by a really liquidy vanilla milkshake from Chick-fil-A (liquidy by request and eaten with a spoon). It was still a very long three hour drive home, but I made it better than I could have imagined.

Day Three

As you can see by the pictures, my smile is a bit crooked. The swelling is much greater on the left than the right. Also, today I have developed bruising under my eyes. Surprisingly you can't really see this in the picture but it is very noticeable in person. Actually, everything looks calmer in pictures! :)

Today I woke up and every muscle and bone hurt in my body. It feels like i've been through a triathalon. If I didn't know better, I would have thought I spent the last week doing a thousand sit ups a day! Thankfully, meds help with this but it is very, very hard to get comfortable.

I have found today I am much hungrier than the last two days. I think my body is calling out for some happy calories and protein to build me back up again. Already i've lost 5 pounds, probably due to all the fluid i've lost. My diet is consisting of applesauce, baby food, and pure liquid soups. Oh yeah, and I had a popsicle tonight, which was the perfect end to the evening!

I've been using my therabite since last night. My doctor had me set it at 20mm and, while it hurts, i'm doing very well on it. I was scared to have such a high setting already, but i'm able to work it perfectly. Before surgery, my average opening was around 15mm, though on good days I could get to 23 ish. Normal minimum opening is 35-40, which is our goal. So far this is a great start.

My ears are also getting better in terms of the blood (I know, gross topic) and the stitches are very clean thanks to my friend helping with that. I still can't see them so it is hard to clean myself.

The big problem is i'm having trouble seeing a bit due to the swelling around my eyes. My left eye feels a bit droopy but this evening i've had some little tremors in it. I think this is a good sign that some of the nerve function is coming back. I just don't feel like I can shut tightly and the left eye waters a lot. I look forward to the swelling going down. I hate the feeling of my ear being swollen shut and not being able to work the eyes well.

So, that is about all I can handle posting for now. I'm doing well, just sore, tired, dizzy, and loopy. I have a ways to go before I will be back to full functioning but it is a good start. Thank you again for all the prayers. I hope by my journaling someone else will benefit. I know how desperately I wanted a blog that detailed this kind of information before my surgery. If there are any questions out there, please don't hesitate to ask!

Surgery is Over!

2010-05-21T22:41:00.002-04:00

Hello everyone,

I got home from Baltimore around 8pm tonight. Everything went well; I have a few complications but the surgery itself couldn't have gone better. It was supposed to be about 3 hours but lasted 4 1/2. That extra time must have been important; i'm just grateful they were able to save the discs and I should have a great descrease in pain.

I'm really out of sorts right now; tired, dizzy, and hurting a bit. I will do my best to post a real blog with pictures tomorrow, so be on the lookout.

Thank you so very much for your thoughts and prayers. They have helped tremendously and I look forward to sharing a detailed account of my journey with you.

Blessings,

Laura

It's Time!

2010-05-19T13:26:00.002-04:00

Well, i'm about to head out to Baltimore to prepare for surgery. My friend and I are going down a day early so that we can relax and settle in. Surgery will be Thursday at 1pm. I am to be at the hospital at 11am to get ready. I wish it was earlier as i'm sure i'll be STARVING, but my doctor wanted the afternoon in case the surgery went long.

I feel quite ready. I know it is time to get this fixed so i'm not too nervous at all. The bummer is I ended up with what looks like Sciatica this weekend. I actually spent Sunday night to Monday morning in the ER because the pain was so bad. They thought it was kidney stones but thankfully it wasn't. The pain started in my right side and back but now is going down my leg. So, this adds on a fun dynamic to the week! Thankfully though i'll be in bed quite a bit the next two weeks which I hear should help the problem.

I will keep you posted as I recover. I plan to post pictures to help those who may be facing this in the future. I know how desperately I wanted to find detailed testimonials to this surgery so will do my best to provide a resource for others.

Thank you for following my journey and praying for me. It is much appreciated! I should be home by Friday afternoon to early evening so keep a look out. If I can, i'll post from the hospital if there is internet and my brain is in tact enough...ha ha!

Yay Preop!

2010-05-13T20:58:00.002-04:00

Today marks the week away mark for surgery. This morning I went to my primary care physician for a physical and blood work. Thankfully, all seems well, not that I was concerned. It was good to hear my doctor affirm this was a good decision. He is quite conservative and is definitely not an advocate of surgery. For this, however, he said, "it is time". That was all I needed to feel at ease.

I've been jumping back and forth the last few weeks about my decision. I think a lot of it has to do with the controversy surrounding TMJ surgery. There are a great number of people out there who believe oral surgeons are not specialists for TMJ and the only treatment one should have is conservative, particularly with neuromuscular dentists.

While I believe NM dentists work for some, they do not solve the problems caused by structural damage. I asked a world renowned oral surgeon from the UK about this, and he affirmed what I believe. The only way to solve the problems I have, especially since they are related to trauma, is surgery.

I'm starting to feel better and better about my decision. I know my surgeon is very skilled and would only recommend this if it there was a good chance of dealing with the problem. I still have some anxiety related to the possible side effects, such as facial paralysis (normally temporary), and the possibilities of more surgery. But at the same time, when asked by my doctor this morning if the risks were worth it, I replied "absolutely". I cannot live like this anymore.

So, as long as my bloodwork comes back within normal range, i'll be moving ahead with surgery next Thursday at 1pm. The friend who is helping and I will head to Baltimore Wednesday. This will save us from having to deal with crazy traffic plus a lack of sleep. I have to be at the hospital by 11am so it is better to not drive that long distance the same day.

Right now i'm working on more nesting and filling my netflix queue with good movies and television series. I almost got rid of my Direct TV back in January and i'm so glad I didn't! I know i'll be watching it a lot over the coming weeks and months.

If you have any suggestions, i'm trying to think about what my "last meal" will be the night before surgery. I will be on a liquid diet for 1-2 weeks, then a "no chew" diet for anywhere from weeks to months. After that it is soft food and then normal food. I could be without normal food from anywhere from 4-6 months, maybe longer (hopefully not!). What would you eat if you knew it was your last real meal?

Ten Days and Counting

2010-05-10T13:38:00.003-04:00

Wow, thank you so much for all the sweet comments and prayers. Sue, I am so sorry to hear about your husband. Your family is certainly in my prayers.

I am ten days away from surgery and the reality of it is beginning to hit. I have been busy nesting away, trying to get the house under control. Hopefully it will be neat and tidy before surgery so i'm able to relax and not worry about keeping it up.

My pain fluctuates from day to day. I have had a few good days recently which has been a blessing. It really is a rollercoaster ride and I just try to take it as it comes.

Work has been a bit tough to keep up with. I'm thankful that while I feel a bit behind, things are still getting accomplished. My goal over the next week is to get everything ready for my recovery. This includes writing a number of sermons and making sure all my homebound parishioners are visited. I think it can get done!

I'll be taking two weeks off and I pray this is enough. I know the recovery will be much longer, but I really cannot afford more than that. I pray i'm able to keep up over the summer. My concern heightens for my June schedule as i'll be at camp with my youth for a week at the end of the month and there is synod assembly only 2 1/2 weeks after surgery. Again, this will include pacing myself and taking breaks when needed.

So, that is it for now. Nothing too excited, just a lot of preparing and waiting. Thank you so much for stopping in. It means so much to know people are praying.

How Many More Days??

2010-05-02T21:54:00.002-04:00

Ooooh, the pain is bad bad bad tonight! After worship services and then taking one of my youth out to Slinky Action Zone and dinner, I can barely take it. Even with pain meds, i've got the good 'ole throbbing and intense aches going on. I cannot WAIT for this to be over!

Earlier this week, my PT got me worried and a bit neurotic again. He said he thinks i'm putting a lot of stock into the surgery. I asked him if he didn't think this was going to work. He replied that he doesn't really know, but he does think that going in and messing with things doesn't usually help. I think he was just having an off day, because really, surgery does help many, many people. Like all the knees he sees in his practice; without joint replacement and such, those people wouldn't be able to walk like they do. I did get concerned though, because as we all know, there are so many forums out there that are radically against TMJ surgery. You read those horror stories and worry it will become you.

I believe i'm making the right decision for the most part, but there is still that side of me that worries. I don't want to damage myself anymore than I am. I also know however, that to live like this the rest of my life would not bring about a quality life. I will be turning 30 in July and to think i'll be in pain like this forever is a terrible, awful thought. I cannot spend my life on muscle relaxants, pain killers, nerve pain meds, etc. I need the chance to live joyfully. To be in this much pain after playing laser tag and going out to eat is ridiculous. I barely made it out the door let along through the four hours I spent with my youth. That is no way to live.

On a side note, my sister is no longer able to come out to help with surgery. However, a wonderful former classmate of mine from seminary is able to help. She has faced many health concerns herself, so will be a great person to be with throughout recovery. I'm so thankful for the many awesome people in my life who give so selflessly.

A Date with Destiny!

2010-04-28T04:58:00.004-04:00

Hooray, hooray, I finally have a date! While it is not 100% confirmed, my surgeon is 98% certain surgery will be on May 20th. This is later than we had hoped, but coordinating with two surgeons and a hospital is a challenge. Praise God the waiting for a date is finally over!

Things around here have been fairly stagnant as i've waited. My pain has been not so hot, but thankfully my happy pills help when needed. I try to hold back as much as possible on them, but seem to be in greater need as the weeks pass on.

I was thankfully able to make it through Easter, a rummage sale at the church, and a 30 Hour Famine program with the youth over the last three weeks. These events were something I was dreading, as I didn't know if i'd be able to function at them. I'm so grateful they went well and I was able to go into autopilot to get through them. And even though I didn't feel so hot, I enjoyed the time with my parishioners. The Famine was especially amazing; the youth raised enough money for World Vision to feed a child for 8 1/2 yrs!

So now is the time to begin making all my preparations for surgery. After I get the final word on Thursday, we will be buying a plane ticket to fly my older sister out to help me through the surgery and the first few days at home. I wish she could stay longer, but as she is expecting her first child, she needs to get back to work to save up time for maternity leave. I'm incredibly grateful she is willing to come. My Aunt was going to be here for the surgery but since the date was moved back, she is unable due to work commitments. I hope she can come out for a fun visit soon though!

My house is a wreck but slowly i'm working through the chaos to get it cleaned prior to surgery. It would not be fun to have a messy house during recovery. There is so much to do to get it in shape I wonder how in the world it will happen! Plus the cupboards need to be filled with the proper mushy, liquid type food with a few chewable meals for my sister.

It is such a relief to know the end is in sight. It makes the pain much more bearable. I'm praying so hard this surgery will be the answer i've been looking for. My body needs a break from this. I know more treatment is inevitable in the future, but if there can be some sort of reprieve, i'm happy.

News in terms of recovery was discussed in greater detail with the surgeon today. He told me for the first 8 weeks or so, I will have appointments with him every 1-2 weeks. That is going to require a great deal of driving to Baltimore; should be fun! He also stated that when I am discharged from the hospital after surgery, I will have to go to his office for an appointment before going home. This makes me even more grateful to have my sister here. It would be a long day for one of my parishioners and I don't know who I could find that had enough time to help with it.

He stated it is going to be a long recovery from surgery. I have concerns about this happening so late in May. At the beginning of June I have a three day conference to attend wtih the synod. Then, the third week of June I have a week of confirmation camp with the youth. We talked at length about taking the proper precautions and limitations while there. I don't know how i'm going to do it as i'll still be in physical therapy three days a week, plus will most likely have an appointment in Baltimore. A lot to discuss and think about with coworkers.

Alright, it is 5am and I have yet to sleep. My jaw has not been happy and it seems some of my meds that used to make me drowsy get me wired. It is odd and frustrating. I laid in bed all night and just now turned on the computer in hopes that it would make me sleepy. It seems to be helping a bit. This lack of sleeping means I will be unable to make it into the office this morning. Ugh...more ways in which TMD gets in the way of living. Bummer.

Still Waiting

2010-04-09T16:00:00.002-04:00

Hey everyone,

Nothing really new to report. On the good side of things, my insurance pre-authorized the surgery a good week and a half earlier than expected! The bad news...still waiting to hear when the surgery will be. It is agonizing to wait on so many levels. I need the date to buy a plane ticket for my Aunt (coming in to help from Seattle), need to know so I can plan on my work, and of course, i'm in so much pain. I hate waiting.

The pain just continues to get worse. It is radiating down my neck and into my back. I try to stretch it to help loosen the muscles and nerves but doing so hurts sooo much. My physical therapist is using traction in conjunction with all the other therapies and it does help some. The problem is i'm having a harder time making it to PT, as the pain is too much and I have trouble getting out of the house. I can't drive on the pain meds and I really hurt too much to find the motivation to get another driver. It's a catch 22 as I know PT will help but so many times I hurt. This week I had to miss twice for this reason. Thankfully I still made it in 2 out of my 3 sessions, I just had to move one.

So, that is where I am at; the waiting game. I think once I know the date i'll be able to find some of the motivation to prepare everything. I've already started stocking the fridge with no-chew foods, which is good. I just need to get this place cleaned up and prepare all the stuff for when i'm out. I plan to take two weeks off so there is quite a bit to get done. The surgery looks like it may be either April 22nd or 29th, hopefully no later. As soon as I know i'll update the blog.

Thank you again for all your prayers. Sorry there isn't much else to report!

The ER and moving ahead

2010-04-01T15:51:00.005-04:00

Well, it has been quite the week! My pain has been getting worse and worse, and of course my schedule gets busier and busier. I really think stress takes it toll!

As my pain has gotten worse, my meds are working less and less. In regards to pain meds, I ended up in the ER the other day with severe pain. Turned out I had a UTI on top of the jaw problems, which the doctor thinks actually was making my jaw pain worse. Sooo, she prescribed pergaset and of course an antibiotic.

And whew, well the pergaset works pretty well. Pain starting breaking through again after about the first dose though. At least it got me down a couple notches on the pain scale. I'm back trying vicodin now to see how it works.

I went to see my surgeon today. He wasn't too pleased I had to go on pergaset as it is the med he wants me on after surgery. We worked it out to where I take the vicodin the majority of time, and the pergaset only when really bad break-through pain happens. I think that is a good deal. He also said he doesn't expect the neurontin to work as it is a structural issue (another doc prescribed this earlier in the week). He says his patients have never really responded to it. Oh well, I guess i'll keep taking it and see what happens. I am not sure though, I may stop. We'll see, i'm too indecisive right now!

Surgery looks like it will be in 3-4 weeks. The big wait is with the insurance. He put an "urgent" request on it to try and move it along. After insurance approves it he said it will only be a matter of maybe two weeks at most before surgery happens. All he needs to do is coordinate it with the other surgeon and book the room. It felt really, really good to hear the number "3-4 week". I actually feel now like it might happen. I'm praying there are no problems with my insurance. I wouldn't imagine there would be as we have put in the time and treatments that are necessary. They say they cover this type of surgery so they better!

While i'm excited i'm also a bit anxious. I have so many things going on this month, including a major youth program at that 3 week mark. My Aunt is also planning to fly out from Seattle to help me the first few days. I hope the lack of notice is still okay with her. In regards to the youth event, I figure this surgery is the priority with everything. If the three week mark is the only date available for the surgeons within a reasonable time period, i'll take it. I have plenty of capable people in my congregation to run the program. I really pray the surgery doesn't have to land on that date, but you have to do what you have to do. I'm shooting for April 29th, as that would be the best date for all of us involved.

Thank you for all your prayers. While my pain is still terrible, this appointment did lift my spirits a bit. He said this would be the last appointment prior to surgery and I wouldnt see him again till the operating room. Pretty awesome and overwhelming all in one! Now it is just physical therapy, getting all the meds, preparing the house and foods, and doing the pre-surgery physical and blood work. Fun times!

Pain, pain, go away...

2010-03-19T21:43:00.002-04:00

No, that is not a picture of me, but it is a picture of the "wonderful" new therabite device I started using today. And it only cost me $300 (note the sarcasm)! This fun little tool is used 5 times a day to try and increase my jaw opening. Currently my opening ranges from between 15-27mm; normal is 35-40mm. So, as you can see, I have a long way to go. My doctor typically only starts patients on this after surgery, but he wants me to start using it prior to get used to it, increase opening as much as possible, and to hopefully decrease pain.

Speaking of pain, mine is getting much worse. It is actually why I drove to Baltimore to see my surgeon today. I have some new nerve pain that goes into my gums and acts like the worst tooth ache imagineable. My muscle spasms are also changing; I can feel thumping in my jaw when it happens. The photophobia and sensitivity to sound is incredible. I actually wore sunglasses to a meeting earlier this week. Embarrassing yes, but totally worth it.

My doctor changed my muscle relaxant today to something that will make me more drowsy but should be better for the pain. I'm still on narcotics and will continue my motrin therapy. Thankfully i'm not taking many of the narcotics and he is not worried about my becoming addicted at this point. I'm so paranoid about it I hold off as long as I can on taking them.

I did find out today that my surgery will be at the Greater Baltimore Medical Center. We will not be doing it at Johns Hopkins for two reasons; there is another surgeon at GBMC that my doctor does TMJ surgeries with, who will be assisting with my surgery. Also, my doctor feels Hopkins rushes patients out too fast after surgery. I feel quite comfortable with his decision and this looks like a great hospital with a good reputation. It is one of the only community hospitals to be ranked by US News as one of the top hospitals in the nation.

I also found out I will be staying in the hospital at least one night. My surgery takes an average of 3.5 hours which isn't too bad but is still the longest surgery I have had. My doctor still believes the surgery should happen at the beginning of May. This weekend he is writing the letter to my insurance company, but we cannot request it until April 4th which is the two month mark with my splint. He said there is no way my insurance would approve it otherwise.

It is looking hopeful that my Aunt and possibly closest friend will be able to fly out to help after surgery. My Aunt would be here the first few days, then my friend would fly out for about another five days. I'm praying this works out as I could really use the help.

I've been in conversation via the internet with a surgeon from the UK. He is considered one of the top TMJ surgeons in the world. I asked him about how many patients on average need a total joint replacement following my surgery. Unfortunately, he said in the UK they don't even do my surgery anymore because of the lack of long-term success. Instead, they immediately go on to a partial or total joint replacement. He would rather not risk damage from multiple surgeries when my procedure has such little long term success.

While I found this news a bit disturbing, I know my insurance would never approve a total joint replacement without me first undergoing the arthrotomy. It is standard practice in the US to go as conservative as possible first, even if it ends up meaning more surgeries in the future. Plus, being only 29, I would rather not have a joint replacement just yet. The good news is this doctor in the UK says he is seeing more and more patients with the same joint replacement 20 years later. I'm grateful to hear this as I feared it was like knee replacements which often need replacing after only 8-10 years.

So, that is my update for now. I'm struggling with pain but am hopeful for this new medication to help. It was very good to talk with my doctor today and I feel a little more encouraged about the wait ahead of me. While it feels like the surgery is so far away, I know it will be here soon. I just need to take it one day at a time and do whatever I can to stay healthy, strong, and on top of my work. Thank you for your prayers and encouraging words; they mean so much to me.

Not a Good Week

2010-03-07T21:19:00.003-05:00

This is my dog Caroline. In this particular photograph, she looks like how I have been most of the week. To say my jaw has not been agreeing with me just does not suffice. It has been a down and out bad week.

For some reason, I have been having setback after setback with my jaw lately. Rather than improving with the drug therapy, new splint, and physical therapy, i'm getting worse. I shouldn't be all that surprised however, as it has been the pattern with me throughout my TMD battle. I have a small period of getting better, and then it climaxes and goes back downhill. It makes me so sad everytime.

As I have spent the day after church in bed and on drugs, I haven't been able to stop thinking about how long I still have till surgery. I know, it is now probably less than two months (if we get the date we're shooting for, May 3rd). Compared to before, this should feel like nothing. It is just when you are in enough pain, every second feels like eternity. I really don't know how i'm going to be able to take the wait.

I wish with all my being this was over. I know there are people suffering greater ailments and pain than I am, but all I can think about now is my pain. I can't get past what I am experiencing to realize how small it is in comparison. I hate that I cannot talk without my jaw spasming. I hate that if I try to eat anything other than soup, oatmeal, or canned fruit my jaw feels like it is in a vice. I hate that even resting it is painful. If i'm not eating or talking, I have difficulty getting my jaw out of the clenched position. I hate that if I lay my head to the side on my pillow, it sets off the nerves.

I want my life back. I want to feel energetic, free to talk painfree and able to eat real food again. I miss being social and having the energy to go out and do things. It pains me when I have to cancel on people because my body won't allow me the freedom to have fun.

Alright, it is time for another pain pill. Thank you to whomever is reading this, for taking the time to read my rant. I'm sorry this is such a downer post; it is just how I feel at the moment. Journaling really is very therapeutic.

TMJ Arthrotomy

2010-03-03T20:40:00.003-05:00

Well, I just had my latest appointment with the oral surgeon on Monday. It went very well and I must reiterate I am so thankful he is my surgeon. The doctor genuinely cares about his patients and never seems annoyed by my silly questions!

The doctor said he has felt from the beginning I needed surgery and at this point it is definite I will be looking at having it done towards the beginning of May. He has been writing my insurance company preparing them for it. We will have another appointment April 1st. It is then we will be able to submit this to the insurance company and pray for approval.

We did find during this appointment that my opening, which should be between 35-40mm is between 16-19mm. At the appointment it was 19 and the last couple days at physical therapy it has fallen as low as 16. At PT we have only measured at the end of therapy, when I am able to get up to 33mm. We have found I am able to open that far after therapy because the tens unit, massage, and jaw exercises relax the muscles some. But sadly, my normal range is pretty darn small.

The sad thing I discovered at this appointment is we will not be doing an arthroscopic surgery with meniscus plication, but rather arthrotomy with disc repositioning/repair/or removal (the meniscus plication). It will be done bilaterally, meaning on both my right and left side. The arthrotomy is an open joint procedure which is more invasive. Here is a description:

Arthrotomy

Indications: Dislocated/damaged discs, bony aberrations and ankylosis, severe adhesions

Description: TMJ arthrotomy is an open joint surgery performed in patients who have intolerable and/or intractable TMJ pain. Most patients have failed non-surgical treatment and/or arthroscopic surgery. This is the surgery of choice for patients with bony intracapsular ankylosis. Open joint procedures include discoplasty (meniscoplasty, repair and/or relocation of the disc), discectomy (meniscectomy, removal of the disc with or without replacement), condylectomy, condylotomy, and total or partial joint replacement.

Arthrotomy is an open TMJ surgery involved making an incision over the joint area in front of the ear. The incision usually extends from inside the sideburn area, then in front of the top of the ear then extending into the ear itself. The part that extends into the ear is placed there to hide incision from view. This “skin flap” is then reflected forward to expose the underlying layers.
The fascial layer is exposed and reflected, exposing the TMJ capsule. The capsule is opened, revealing the disk (meniscus). This is usually the structure causing your symptoms. The disk is carefully examined, its position, thickness, smoothness, and flexibility is noted. The bony surfaces of the TMJ are examined: special care is taken to identify rough surfaces, sharp edges, cavities or anatomical abnormalities. If the disk is healthy enough it is repaired; repair involves pulling the disk into a more normal position and holding it there with stitches (sutures).

If the disk is abnormally stretched out it is “tightened” by taking a wedge of tissue out behind the disk and suturing the edges together. If the disk is damaged beyond repair it must be removed; if an excessively damaged disk is not removed it may continue to cause the same symptoms after surgery. This final decision to repair or remove the disk is made after directly examining the disk at surgery.

After the disk is repaired/removed the bony surfaces are examined; any excessively rough surfaces are smoothed out with surgical files. If the disc was removed the surgeon will decide whether to not replace the disc, to implant a temporary disc, or to replace it with a graft of tissue from the patient.

Post-procedure care: Thermal therapy, pain medication, aggressive physical therapy including motion therapy, close and frequent follow up,
(Please see our Post-surgical Rehabilation page for more information.)

I am saddened to discover this is what i'll need but I know my surgeon would only prescribe it if absolutely necessary. I will talk with him further about this decision at our next appointment.

In April I will also begin using a device called the Therabite. He usually only has his patients use it after surgery, but felt it was important to get my jaw used to it prior. I've been told by those who have used it they feel it is a torture device. After surgery the last thing you want to do is exercise your jaw opening, but it is essential to cut down on scar tissue build up. I'm not looking forward to using it even before surgery, but will do whatever it takes to feel better.

So, I think that is it for now. My pain is getting worse again but i'm thankful to at least have a timeframe now for when we will be doing surgery. Please pray we are able to do it sooner than later. This is not only for the sake of my pain, but also because I am supposed to be at our synod assembly in early June and at confirmation camp with my youth the third week of June. I really pray I can be at both events and feeling somewhat human. I hope and pray surgery will be the first week of May!

Getting Ready

2010-02-23T19:39:00.003-05:00

Alas, I promise more frequent updates and I drop off the center of the earth again. I'm sorry about this but at least it is somewhat good news.

I am nearing the month mark (Thursday) with the new splint. The good news is I have moved past the crying everyday stage. My pain level has dropped about a point. Instead of sitting between a 9 and 10, I now fluctuate in the range of 7-8 (usually close to an 8). It has really helped me to continue with work, which is a blessing because i've been really worried about my job.

This week has been a little rougher than the past three. The nerve pain seems to be getting a bit worse. It is difficult now to lay with my head to one side, as I have some shooting pain. This is new and I don't know why it has started. My arm/wrist is also getting much worse. We aren't sure still if this is something related or not and won't know until after surgery (which isn't 100% determined yet but am pretty certain it will happen). I'm praying this rougher week is just a fluke and I can get back to the lower end of my pain (come on 6!).

With this small drop in pain i've been able to take less medication. I no longer have to be on it 24 hrs a day, though have yet to go through a day without something. Thankfully the narcotics sit there and are not touched everyday; they are only used for emergencies. Really, it is muscle relaxants and prescription motrin. I'm hoping the doctor might prescribe something nerve related at the next appointment, as that is where most of the pain is now.

My next appointment is this upcoming Monday with the oral surgeon. I'm somewhat nervous about it and don't completely know why. I wish my pain was better than it is. This 10-15% drop in pain is not enough to prevent surgery. I wish it was but I don't think I can live my life like this for long term. While i'm celebrating not crying everyday, I still hurt and struggle to function well. Without the pills, 24hr splint, soft food diet, and physical therapy 3X a week, I don't know what i'd do. I'm really tired of hurting all the time.

So, that is the update for now. I am praising God that I am able to function in my job though am praying for less pain so I can be an even better pastor. If you could pray with me on this it would be greatly appreciated. Hope you all are doing well and will be keeping you in my prayers.

So Unattractive!

2010-02-04T22:41:00.002-05:00

I apologize for the length between updates. It has been a difficult few weeks, with my pain increasing and work load growing. The arthrocentesis did help to alleviate some of the muscular pain; the downfall to this is I felt the jaw and nerve pain so much more. Since the procedure, I have had to be on much stronger pain killers daily. Thankfully though, I am slowly able to cut down on the narcotics and move back into muscle relaxants and high doses of motrin. I'm hopeful I can stay away from the "bad" drugs.

Today I went back to the surgeon and received my new 24/7 mouthpiece. It is much uglier and bulky than I had anticipated. It fits over my bottom teeth and causes a bit of a lisp. The only time I am supposed to take it out is for eating and preaching he said. Ughh...how I hate it. Even after the possible surgery I will have to wear this thing. I would love to just throw it in the trash but it is a spendy little bugger and he thinks it will help at least some. I find like every other splint i've had I am clenching more but i'll try to keep my mindset optimistic. It may very well help once I get use to it.

The news on the surgery front is both good and bad. While i'm completely ready to head in to the operating room at this point, the waiting game will continue. For insurance purposes as well as to allow us to see how the splint works, we'll have to wait another two months. The doctor said the insurance company requires this last wait before they will ever approve the surgery. The good news to this is it will give us the chance to really give the splint coupled with more physical therapy a chance to do its thing. The bad news is more waiting, more pain, and the surgery date possibly interfering with important work stuff.

I'm finding i'm not the most patient person when it comes to pain. I cannot stand my life being so debilitated with this. The thought of my life being in semi-hold for an even longer period of time is agonizing. I just want this over. I know the wait is a good thing for my body but for my state of mind I feel destroyed. It is amazing how the body effects the mind so much. With each day that passes, i'm feeling more down in the dumps and can't find the motivation for anything. My house is a total disaster, and work is so hard to focus on. All I can focus on is the pain and the hope of getting rid of it.

Please pray i'm able to get my energy, motivation,and zest for life back. I just want to feel normal again.

Thank you for continuing to check in. Each comment left really does make a difference. It is great to know someone out there is reading this. :) I promise to keep up more with this blog. I am finding it very therapeutic.

Symptoms of TMJD

2010-01-20T22:46:00.003-05:00

For those who are interested, I thought i'd post the medical list of symptoms associated with TMD. While there can be more than are on this list, and while each patient doesn't have all of these, I thought this could show just how complex of an issue it can be. I cannot believe reading it just how many symptoms I have. As my pain increases, the symptoms are becoming much more severe and the list is growing.

The Kinnie-Funt Visual Index of Head, Neck and Facial Pain and TMJ Dysfuction:

Eye Pain and Eye Problems:
-eye pain above, below, behind
- bloodshot eyes
- blurring of vision
- bulging appearance
- pressure behind the eyes
- light sensitivity
- watering of the eyes
- drooping of the eye lid

Head Pain, Headache Problems, Facial Pain:
- forehead pain
- temporal pain
- "migraine" type headache
- "cluster-type" headache
- sinus headache under the eyes
- posterior headaches, back of head, with or without shooting pains
- hair and/or scalp painful to touch

Mouth, Face, Cheek, and Chin Problems:
- discomfort or pain to any of these areas
- limited opening- inability to open the jaw smoothly or evenly
- jaw deviates to one side when opening
- inability to "find bite" with teeth

Teeth and Gum Problems:
- clenching or grinding at night
- looseness and or soreness of back teeth
- tooth pain

Jaw and Jaw Joint Problems:
- clicking, popping jaw joints
- grating sounds
- jaw locking opened or closed
- pain in cheek muscles
- uncontrollable jaw or tongue movements

Ear Pain, Ear Problems, and Postural Imbalances:
- hissing, buzzing, ringing, or roaring sounds
- diminished hearing
- ear pain without infection
- clogged, stuffy, "itchy" ears, feeling of fullness
- balance problems, "vertigo", dizziness, or disequilibrium

Throat Problems:
- swallowing difficulties
- tightness of throat
- sore throat without infection
- voice fluctuations
- laryngitis
- frequent coughing or constant clearing of throat
- feeling of foreign object in throat
- tongue pain- salivation (intense)
- pain of the hard palate in the mouth

Neck and Shoulder Problems:
- lack of mobility
- reduced range of movement
- stiffness
- neck pain
- tired, sore neck muscles
- shoulder aches
- back pain upper and lower
- arm and finger tingling, numbness and or pain

Emergency Arthrocentesis

2010-01-19T21:59:00.006-05:00

After my last post, I ended up spending that monday night in the ER trying to get pain under control. Unfortunately, the rest of the week did not get any better. At my appointment on Wednesday at Hopkins, the doctor decided I needed arthrocentesis asap. My pain was uncontrollable and nothing else seemed to work.

I stayed overnight in Baltimore and went to his private practice the next day. We did the procedure under general on both joints. For those who do not know, arthrocentesis is done with two large needles, one pushing fluids and the other draining. During this procedure they are able to clean out the joints and inject cortisone. My doctor said it is also a good way to feel around and get a better idea of how damaged the joints are. It takes about 20 minutes per joint.

We discovered during this procedure my left joint is moderately damaged; they are not too concerned about it compared to the right side. The right is severely damaged, much more so than he had originally thought. He went ahead and made a mold for a mouthpiece during the procedure because I have trouble opening my jaw far enough when awake. The doctor now feels surgery is definitely in my near future, possibly as soon as 6 weeks away if insurance cooperates.

I have not been recovering as well as I had hoped from the procedure. The point of arthrocentesis is to relieve pain, but i'm still struggling significantly. Currently i'm taking at least 1 narcotic pain reliever a day, but hope to stop this soon. I'd rather stick with muscle relaxants and high dose Ibprofen if possible. While some pain from prior to the procedure is a little less, there is some new pain. I'm still very, very high on my pain scale.

I now have a new prescription for physical therapy, solely focused on my jaw. I'm my PT's first TMJ patient and he is excited to try some new things. I wouldn't want to go to anyone else even if they had experience; i've been with him for almost 8 months now and am comfortable where i'm at. I think we'll both learn something along this journey.

So, that is my update. It has been a very tough week but i'm hanging in there. Please pray i'm able to keep up with work as I wait for surgery. The pain is getting tougher to deal with each day that passes. My next appointment with the oral surgeon won't be until the insurance approves the mouthpiece and then it is made. It could be another two weeks and I don't know how i'll make it that long. Pray it goes fast.

Hit the Wall

2010-01-11T21:05:00.002-05:00

While I would love to claim i'm feeling as content as my furry child Melanchthon pictured here, that would be by far the falsest statement I have made in my 29 years here on earth. Mel is indeed curled up here at my feet, happy and as lazy as ever. All three of my fur-children continue on today as they do everyday; eating, sleeping, getting up only to use the restroom when it is deemed absolutely necessary.

Today I have finally hit my wall. I awoke this morning realizing the second I opened my eyes it was not going to be a good day. While it is Monday (usually good news as it is my day off) the news was not good as the pain was immediate. The nerves around my eyes were immediately shooting pain just at the movement of my eyelids.

I went to physical therapy which helped for a little while. I then went to another doctor appointment where we decided I should start to wean off topamax since it is not helping at all (on for migraine symptoms). The drive is two hours each way to this doctor appointment; part of the joy of living in the rural part of the country.

I have been in tears all day. My pain levels have been a bit nuts and I think my emotions have gotten the better of me. I'm at that place where you hit the wall and everything comes tumbling down. I've done a fairly decent job of keeping up a front for people so they don't seen just how bad things really are. I'm wondering how well i'll do with that now that the floodgates have opened. I can't seem to stop crying anymore. The littlest things are causing me to cry now.

I'm hoping and praying my emotional and physical health can hang on just a bit longer...at least till we get to surgery. I need to stay strong for the sake of keeping my job and my sanity.

Initial Consult

2010-01-09T20:21:00.002-05:00

I apologize that it has taken so long to post about my appointment. The past few days I have been extra tired. It's been exceedingly difficult to maintain my schedule with the fatigue. By the time I would sit down to post, I would fall asleep!

The hospital was much larger than I expected it to be. While I had visited before, I never actually went inside. This would had been a good idea, as it took much longer to make my way through than I anticipated. It would a good thing I arrived early because by the time I made my way from the parking garage to the oral surgeons, I only had five minutes to spare! It took about 20 minutes to walk from my car to the appointment. Amazing!

They did a panoramic x-ray which I expected. I hadn't had one done in a number of years so it was good to have a new one done. I was glad I had brought so much of my medical history with me, including a written report from my ENT, the original write-up from my accident, and a list of all the medications and treatments I have had over the last few years. It was much longer than I had realized but shows just how much treatment i've really gone through.

What we have found so far is that the condyles of my jaw are flat with bone spurs on them. The condyles are supposed to be rounded so this is not good news but is to be expected with the length of time I have had TMD and the clenching/grinding I have been doing for 22 years. They also found I have signicant myofascial problems which we already knew. We will not know much else without an MRI.

The appointment was about an hour long. There is little hope for conservative treatment due to the fact i've already done almost everything there is to do. They do not want me using the NTI splint anymore because it is doing more damage than good. The doctors (there were two) prescribed 800mg 3 times a day of motrin plus a new muscle relaxant (skelaxin) to see if it will help. In a couple weeks i'll go in to make a mold for a new mouthpiece to wear 24 hours a day. They are hoping this will help a bit.

If this doesn't work they will do athrocentesis. This is an outpatient procedure where the doctors go into the jaw laproscopically, clean out the joints and look around to get a better picture of what is going on. While they do this they inject steroids into the joint. If this doesn't work we will move forward with surgery.

The surgery we are planning on is twofold: The doctors will round out the condyles to give them a normal shape, hopefully prevents the discs from getting lost again. They will then attempt to get the discs back to where they belong. If the discs are too far damaged, they will remove the discs permanently.

90% of cases of TMD do get better with conservative treatment. The doctors said they would have expected to see mine respond better by this point. I will admit, I hold little hope for mine to get better without surgery; maybe i'm just too much of a pessimist at this time and place in my life. I think i've just been through too many treatments to have hope anymore. When the doctor wrote out the prescriptions I just kind of rolled my eyes. I've been doing NSAIDS and muscle relaxants for so long, why would a higher dose do any good? Oh well, you just go with it and make them happy. He told me it is to look good for insurance. He said most of these steps are too look good for insurance, and because most cases do get better. He also said though that no doctor ever expects to see a jaw look like mine at 29 years old. So I guess i'm just the weirdo. :)

My physical therapist encouraged me to call the doctor back after my appointment to ask for trigger point injections. He felt the motrin/muscle relaxant therapy was not enough for me. Since I would have to wait three weeks before seeing the doctor again, he didn't want me to continue hurting. My PT feels the muscles are too tight to be relieved through pills and I really need the injections. So, I called hopkins up again and have an appointment for the 13th. They wouldn't let me leave a message for the doctor to ask if he would be willing to do the injections. All I was able to do was make the appointment. I hope the doctor is willing to do it, otherwise it is a wasted 6 hours of driving. Oh well, here's hoping! The shots don't sound pleasant, but if it helps relieve the pain for a while, it is a good thing.

Overall, the appointment was amazing. He is a tremendous doctor, considered I guess the #1 in Maryland and one of the top in the nation. He treated me with a lot of respect and listened so well. I've never felt so validated in regards to my TMD and I really feel like i'm in good hands. It is the first time I know there is some direction with this and I have hope that maybe one day I won't be in pain. Just having that hope makes it all worth it.

Brief Update

2010-01-06T22:24:00.003-05:00

I'm back from the appointment at Hopkin's. Everything went extremely well. The physicians there are beyond amazing. Fortunately and unfortunately the medications he gave me are already starting to kick in. One i'm only supposed to take at night as it makes me sleep; let's just say it is working beautifully at the moment. :-) So, I will give you a detailed update tomorrow.

Thank you for checking in and most of all your prayers.

Finally Here

2010-01-06T06:33:00.004-05:00

Well, the day is finally here. I will be headed to the oral surgeon's office later today. I'm a bit nervous and am praying to finally have some answers and possibly relief. My hope is that there is something they can do today to at least provide some temporary relief. My physical therapist thinks he may do some trigger point injections do bring down some inflammation which should relieve some pain. Sounds quite pleasant. *smile* I'll take anything if it means less hurt.

If you could, please say a prayer or two they are able to find some answers. I'm really hoping this is the doctor that is able to help. I'll update when I get home tonight. I know I won't come home with tons if information as this is only the first consultation, but at least it is the start.

There is new snow outside so I hope the weather isn't going to be too icky today. It is a three hour drive each way. Gotta love Pennsylvania!

The Good Days

2010-01-03T23:46:00.004-05:00

It is when you are at your lowest that God sometimes sweeps in and blesses you with a good day. I love those little surprises.

Today I was preaching on how God came to us in Christ's birth, and how he continues to still come today. As we enter this new year, we can look forward, we can look ahead with anticipation, knowing that God promises to be with us each step of the way.

I was blessed this morning to awaken to a day where I felt God's presence in my life. I felt God come down and touch me, heal me, with a day where the pain was not overwhelming. I was able to enjoy myself as I led worship. I didn't lose my words like I have so many other Sundays recently due to the fog overtaking me, a dizzy spell, or the pain being too much. I was able to have clear conversations and follow what others were saying throughout the Sunday morning, during the visitation I did after services, and this evening as I had guests at my home.

Today, I felt somewhat normal. While the pain is still present, while I know I am not healed by any stretch of the imagination, it was indeed a good day. It was one where I was able to get everything done that needed to be done, and there was even time to have some fun. And for this, I can be thankful. It is days such as this I praise God and will hold onto when the not so good days arise.

Sure, if you say so...

2010-01-02T23:01:00.004-05:00

Have you ever found yourself at your physicians office, at your wits end, just saying, "yeah, sure doc, if you say so". It is when you get to that point where you are tired of them not quite hearing you when you say, "no doctor, really, it isn't stress" or "really, i'm telling you, they aren't migraines" or " for the 10,000th time, this medication really has never made a difference"!

I've found over the last few months, or really over the last few years, i've said this more and more. "Yeah, sure doc, whatever you say". "Of course it is the stress. Wow, definitely, it must be those darn migraines again." "Gosh, maybe I really do need anti-depressants and it is not jaw pain".

There are so many medical conditions out there that are misunderstood, and I am finding TMD has got to be one of those that fits within at least the top 20 or even top 10 of the most misunderstood in our medical community. It is so misunderstood that insurance companies often cannot even agree whether it is medical or dental, so often it is not covered by either. Praise be to God that I have coverage, but it is a very rare case someone is blessed with this (mine falls under medical).

My doctors here at home have little to no experience with TMD. I am actually one of the first cases my physical therapists have seen of TMD in their office. The one physical therapist from the College that came in the other day is a professor at St. Francis University, and he has seen less than 10 cases in his career. My own physician believes TMD is myofascial at heart and I just need to "relax" as he loves to say. The most he has done is refer me to a neurologist. When we found nothing wrong with my brain he agreed it is my neck and jaw, sent me to PT, prescribed me some drugs, and suggested I again, "relax". Not once was I referred to an oral surgeon. I had to do this on my own, remembering this was strongly urged by an ENT back in 2002 (he believed I needed surgery then but I didn't have insurance to cover it).

Anyway, back to my point. I have found myself getting to the point that I am just nodding my head, going along with what doctors say as I don't feel like battling it anymore. It seems their minds are made up before you even open your mouth. What feels even more true is that their ears are totally closed up. Do they ever listen to what you say? I swear I wonder if my primary doc even knows my jaw hurts? Just relax? I'm telling you if I hear that one more time i'm gonna smack someone! :) I know part of TMD is stress, but how do you relax when your jaw hurts all the time? Part of clenching is due to pain. Pain creates stress. I do meditation stuff, massage, heat and the like...which of course is awesome and can help, but it doesn't take away from the fact that my jaw is massively out of whack. Pain is pain Dr. Dude!

Alright, those good muscle relaxants are kicking in so it is time for bed before I start typing anything too crazy. Goodnight dear virtual readers...

The Overplanner

2010-01-02T01:11:00.005-05:00

Some may consider me an overly-annoying planner. While in most areas of my life I am a chaotic mess, when it comes to planning out my future, well...let's just say the OCD traits come flying out.

It seems whenever something "big" is coming up, I tend to research things to death, always laying out the "what-if's" and having some sort of plan in place in case, A, B, or C happen. It is not neccesarily because I am worried about something or even excited; it is just what I do to get my brain in order. I actually find it to have a calming effect on me.

This trait in me has especially been prevalent when it comes to my health. I've seen it in its crowning glory on days when my TMD pain it at it's worst. Maybe it is a coping mechanism, but I tend to overdo it sometimes.

As my jaw has been so bad lately, especially as the clock ticks closer to my surgeon appointment, I have been doing more of my "what if" planning. I guess it is because I know the door of my future can swing in so many directions.

My work requires my jaw to work quite well, as I am a public speaker. Those I work with have been divided in terms of support while my health has progressively gotten worse. I do worry about what will happen when surgery comes calling, and of course what will happen if things don't go in a positive direction afterward. What if I do require more surgeries in the future? What if I have to look into alternative lines of work later in life?

I was silly to voice some of these things to a family member tonight. Bad idea, I know. I am learning those around you do not want to hear what the little voice in your head is thinking. While you may think it is logical to make lists in your head, research surgical procedures, doctors, etc online...not everyone does. My thinking ahead brings soothing and comfort to me but to my others it may simply tell them that I am neurotic and expecting the worst.

I wonder sometimes if this is a normal reaction to such life events? Do others do such planning and research in the midst of possible surgeries or other life-altering situations?

I think next time I do my research or have my thoughts, maybe i'll just blog about it rather than telling my loved ones. It may be a bit safer. :-)

The Fog

2009-12-31T23:30:00.007-05:00

*Comments were fixed so anyone can comment now without an account. Sorry for the problems!*

Have any of you ever seen the movie, The Fog? I'll admit, I haven't had the pleasure as of yet, but the title and the movie poster have left an imprint on my mind for quite some time. Maybe it is because I am a semi-closet fan of horror movies...

Anyway, as any of you TMJD sufferers can probably attest to, with this wonderful disorder comes what I call, The Fog. Anyone that knows me well has probably seen me in it quite often. It is when my pain level gets too bad and I am out of it; my eyes have that great spacy look, my usually bubbly self quiets, my shoulders slump, and if I do walk it is as if I am a zombie. Yes, I am in The Great Fog.

This is how I spend most of my days now. Over this year particularly, I have more and more days spent in this spacey state. I am lucky if I get a day that I feel normal anymore. This is probably why most of my friends and family say that I don't call. When the pain gets so great, The Fogs hold becomes even stronger.

What surprises me about The Fog is that when it's power overtakes, it makes one want to lay around. The problem with this is it can often cause a TMJD sufferer to clench and/or grind more, leading to more pain. The laying position is also quite bad for myofascial pain, particularly in regard to the neck. It is amazing how the things one wants to do when they hurt can often make the pain worse.

To find relief anymore all I can really do is take a hot bath, a flexeril, and sleep (always the result of the muscle relaxant). I remember well that back before things got really bad a heating pad would help or other days some ice. Often I just needed to dim the lights and close my eyes for a while to quiet myself. I know often stress can be a trigger for the TMJ and has usually made my problems worse. It is hard to see that these things don't work anymore.

So, my question for the rest of you TMJD sufferers (if you are out there reading this). Do you fall into The Fog? If so, how does it affect you? What do you do to find relief?

Remembering

2009-12-31T00:37:00.006-05:00

Today I drove out to Baltimore. I had to run a few errands which required I kill an hour or so in between. While I had the extra time I figured I might as well orient myself with where Hopkins actually is. I knew it had to be a large hospital and like most would be in a confusing layout. As expected, I was quite correct.

Spending time alone in the car often gets one thinking. This journey caused my mind to do what it has been doing often; reflecting on how I got to this place. Since I finally made the decision to see the surgeon, something I have put off for seven years (was referred back in 2002), all I can think about is the "how's" and "why's".

I'm finding myself becoming really angry. I'm angry that I have had to go through so many doctor appointments, so many years of daily headaches, years of treatments, medications, and the like. I'm angry I may have to face surgery, most likely multiple over my lifetime. I'm angry I haven't been honest about my pain to either myself or my loved ones over the years. While it is good to not focus on my pain, it was also not really healthy to ignore the symptoms either. Really, i'm having a pity party and need to snap myself out of it real quick.

The "how" factor has me more upset than anything. I've never taken the time to really center myself on this before. Back when I was seven years old, I fell about 1.5 stories in a gym class accident, landing directly on my jaw. As this was a number of years ago, they did not follow what would be today's standard procedure. While I was knocked unconscious and very well could have had serious injuries, they removed me from the gym and took me to the nurses room in the school office rather than call an ambulance. I required over 42 stitches, most internal.

I can't help but to think of what could have been different if things were handled differently that day. I think of what may have been different if the doctors would have done better follow up care over the years. Would I still be in this position? I don't know. Maybe...probably? I wonder sometimes. I know we are not meant to dwell on the "what if's?" but the human side of me does sometimes. I guess even with the more "minor" aspects of health there is some kind of grieving process that takes place.

I know this is not a life-threatening ailment but knowing how life-altering it is scares me. I know that the decisions the doctor and I make over the course of the next few weeks will greatly affect the rest of my life. It is amazing to me that something as small as the jaw has such a huge impact on ones life, but it really does. While I have had jaw/head/neck pain everyday for well over a decade now, this last year has been so extreme to the point of being almost debilitating.

I pray for answers. I pray that the strides, while I know they are few, which have been made in TMJ treatment are enough to help bring relief. I pray that if I do have surgery it is successful and does not lead to multiple surgeries in the future. I will admit it, I am a bit scared. This is nothing like any other surgeries I have had in the past. I could learn a thing or two from the hundreds of children I have met, read about, and prayed for who have battled far greater journeys than myself. They certainly make us adults look weak, don't they?!

Getting Started

2009-12-30T23:25:00.008-05:00

As a way to get this blog underway, I will post a little blurp I shared on a forum earlier today. I will give a greater description later but at least this will give the blog a bump in the right direction.

I don't know where this blog will go. I will keep this anonymous, knowing this may never be read by another soul. As there are so few resources out there for TMD (www.tmj.org) sufferers, I felt even if this ends up just being a journal for myself, maybe someday, another person may read my journey and will find the experience helpful as they begin their own. Who knows. No matter, maybe all it will be is a way for me to chronicle this part of my life so someday I can look back and hopefully see how far I have come. *smile*

So, here is the blurp.

I am going in finally for a consultation at John Hopkins with an oral surgeon about possible TMD surgery next week. I am excited, nervous, but more than anything... ready to get rid of the chronic pain that has been worsening over the last 22 years.

I have tried everything under the sun to find relief. I've been through the ropes of conservative treatment, praying to avoid surgery. The latest has been new splints, physical therapy, massage, chiropractic, over a dozen different meds, etc. Nothing has brought relief and this last year i've seen the most extreme worsening of symptoms in years. My hope by coming here is to find support, advice, and answers to all of the questions swarming through my head.

This world of chronic jaw pain can be so lonely, as I am certain most of you can attest to. It affects so many aspects of my life; i'm especially seeing this in my work right now. The worse the pain is getting, the harder it is to keep up with life in the workforce. Coworkers find it difficult to understand and there is no way to help them step into my shoes.

Anyway, I disgress.

So, there is my blurp. I hope someone finds this blog, particularly those of you facing similar journeys. Please, if you do, share your stories. I would love to hear from you. Hopefully we can be a support to one another as we seek relief from our jaw pain.