3.5 months Post Op

Hey everyone,

So sorry i've been gone for a while. I just moved from PA to WA state and have been running around like a crazy person. A bit stressful but a really good move. I'm so happy to be with my family again!

Anyway, it is about 3.5 months post op from my bilateral arthroplasty. Things have been fairly good. I can move my eyebrows again, though still a bit weak on my left side. I can feel almost my entire face which is awesome! I still take daily motrin (800mg pills) and soma, though can limit it to once a day. This is more due to finances than anything else. I lost my health insurance with the move and don't have the finances to pay for anything (and I mean anything) until I get my first paycheck.

The big thing i've noticed is the pain. It is obvious that this surgery goes through your major facial nerves. Of course I knew this going in but didn't quite know what to expect. I get that horrible tingly/itchy sensation all the time, going up into my scalp. Many times I have these itching spells and look like I have lice or something! The other issue i've notice is I still have quite a bit of pain/discomfort. My jaw feels tense and is especially sore on the left side. I use my therabite several times a day, which helps some with the pain and helps me to maintain my awesome opening. The surgical sites are still very tender to the touch in terms of nerves. My neck has tensed up more since I stopped PT, though i'm trying my best to do home exercises to relieve it. I use heat a lot too to try and help.

What have others experienced at this stage in their recovery? At times, family and friends have a hard time understanding why I still am not "better". I've explained to them that i'll never be completely better though they have a difficult time grasping it. I think they thought this would be the miracle cure, no matter how often i've explained to them it isn't. I still think i'm better than prior to surgery, though definitely some days I don't feel it is enough. I think the stress of leaving my job, moving cross country, and the lack of finances has definitely added to my problems. I'm trying my best to work through the stress so I don't hurt myself much more. It wasn't a great time to move in terms of recovery, but the stress of my awful work situation was so much more. Gotta love the rollercoaster of life!

Day 7

Ahhh, the bruising continues! As you can tell, the left ear area is really looking pretty ugly. My pain today was pretty bad due to the bruised sensation. Every nerve throughout my head; side, forehead, top, back, etc...it all hurts at the slightest touch. I was awake all night due to this, even to the point of seeing the sun rise. I refused to look at the clock which is what I think helped me make it through today!

I had physical therapy today; day 2. It went really well, and I was able to open to 32mm at the end of my appointment. Even better, I reset the therabite this evening to 35mm and was able to do it! This is the minimum normal and I am so happy to be there. My side deviations are getting better too. I was able to deviate to the left 10mm and the right 8mm. Normal is 15mm.

The pain was bad throughout the day but it went fairly well. I have two friends from my seminary days who arrived this evening to visit. They are pastors in central PA as well. One lives an hour away and the other about 3. It is so good to see them and even though I hurt they were able to help take my mind off it a bit.

So, that is my update for tonight. A bit short but I am tired and praying I get some sleep this evening. It is hot hot hot over here so that isn't helping. Praise God for air conditioners; I don't know what I would do without mine. As a native Northwesterner heat and I do not get along. I'm praying this crazy heat/humidity wave goes away for a while!

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.