Getting Ready

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!

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

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

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

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

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

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.