Pain, pain, go away...

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

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

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

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.