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?

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!

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!

The Overplanner

Some may consider me an overly-annoying planner. While in most areas of my life I am a chaotic mess, when it comes to planning out my future, well...let's just say the OCD traits come flying out.

It seems whenever something "big" is coming up, I tend to research things to death, always laying out the "what-if's" and having some sort of plan in place in case, A, B, or C happen. It is not neccesarily because I am worried about something or even excited; it is just what I do to get my brain in order. I actually find it to have a calming effect on me.

This trait in me has especially been prevalent when it comes to my health. I've seen it in its crowning glory on days when my TMD pain it at it's worst. Maybe it is a coping mechanism, but I tend to overdo it sometimes.

As my jaw has been so bad lately, especially as the clock ticks closer to my surgeon appointment, I have been doing more of my "what if" planning. I guess it is because I know the door of my future can swing in so many directions.

My work requires my jaw to work quite well, as I am a public speaker. Those I work with have been divided in terms of support while my health has progressively gotten worse. I do worry about what will happen when surgery comes calling, and of course what will happen if things don't go in a positive direction afterward. What if I do require more surgeries in the future? What if I have to look into alternative lines of work later in life?

I was silly to voice some of these things to a family member tonight. Bad idea, I know. I am learning those around you do not want to hear what the little voice in your head is thinking. While you may think it is logical to make lists in your head, research surgical procedures, doctors, etc online...not everyone does. My thinking ahead brings soothing and comfort to me but to my others it may simply tell them that I am neurotic and expecting the worst.

I wonder sometimes if this is a normal reaction to such life events? Do others do such planning and research in the midst of possible surgeries or other life-altering situations?

I think next time I do my research or have my thoughts, maybe i'll just blog about it rather than telling my loved ones. It may be a bit safer. :-)