Yay Preop!

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?

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.

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!

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.

Sure, if you say so...

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...