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!