A Date with Destiny!

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

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

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...

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.