I thought before I launched into writing articles and fully running the message board, I should explain where I have been for the past year, and what brought me back.
For those of you who don’t know me, or my story, I had bilateral TMJ replacements about two years ago. About one year after the surgery, I decided to move back to my favorite city in the world: San Francicso. When I moved, I was under the impression that I might be able to put some of TMJ disorder behind me. I had closed the TMJ Friends message board because it was just too much to handle for one person, and started out west.
After the initial excitement of a new beginning wore off, I found myself isolated. I also realized how much it helped me to set aside my issues and help other people. I never knew how much I would miss the support and community that was established with TMJ Friends.
Have you ever said to someone, “I have a really bad headache,” and their response was to tell you about how their headache was so much worse.. and then the conversation ends there? You might get a response like that on a support board, but it doesn’t end there. It always opens a dialog and prompts feedback from other people. I didn’t have many people to get feedback from, and certainly not anyone who really understood. Not that I blame them - how could they understand when they didn’t really know me?
San Francisco was a learning and growing experience. No one likes pain - we all want to try and change our situations and the circumstances that caused them. However, a new location doesn’t change anything! All you can change is the way you feel or deal with your circumstances. These things are much easier to handle when you are surrounded by people who love and support you.
I think Dorothy from Wizard of Oz said it best: “If I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with!”
One of the most common questions I am asked regarding my joint replacements is if I would do it again. That is a hard question, because I feel as though I had very little choice. My joints were fused, and I could either live with extremely limited function and a high pain level, or I could take the chance on the total joint replacements and gain both pain relief and function, or at least one of the two.
They say hindsight is 20/20. Considering the small gain in function and limited pain relief, I would NOT do it again.
I don’t think the small things I gained were worth the pain, effort, travel, and money.
I am also very limited in what can be done now that I have the joint replacements. I am very young, and because of this will end up having many more joint replacements.
Very few doctors know how to deal with the chronic pain and limited function that I have as a result of over 10 TMJ surgeries and nerve damage.
If and/or when the joint replacements fail, I have no options other than new joint replacements. If I become allergic to the materials in the joints, I have no options.
I do believe TMJ total joint replacements have their place in TMJ surgery. Some patients are good candidates for this procedure and do very well for years. There are patients now that have had joint replacements for over 15 years and are doing very well. However, these patients are few and far between.
The lesson here is to make sure you understand that total joint replacements often do NOT relieve pain. If the major reason you are having the joint replacements is pain, you might be better off in long term pain management.
I got my stitches out today and my surgeon says everything is going well. He will be writing the surgeon that did the implants to get a schedule for my physical therapy with the Therabite, and I will go back in 10 days for a check up.
Now comes the hard part - getting my opening bigger. Everything still feels pretty tight, but I’m trying!
Either the swelling has gone down a little bit, or I am getting used to my new big face. I think it’s the latter.
The pain on a scale of one to ten is a tolerable six. I still need pain medication but I don’t feel like crying. It’s hard to distinguish at this point what is surgical pain and what is residual pain left over from TMJ disorder.
This morning when I got up and spoke to my Mom, the strangest thing happened. After I said a couple of words to her, I found myself repeating what I said over and over and making different noises. My new joints vibrate when I talk, but only with certain words. I think I’ll either get used to it, or it will disappear once the swelling goes down. Will I be hearing radio stations next? And I hope if I do it’s not Mexican Polka music!
Most people ask me if the joints feel “weird.” I honestly have to say (besides the vibrating), that they don’t feel any different than my last ones did. I think this both speaks for the amazing construction of them and the incredibly talented surgeon who implanted them.
I still have questions about how they’ll feel as time goes on, like in weather changes - will cold effect me? Will I feel storms coming? I’ll just have to wait and see.
I think that the general rule of thumb is that after any major trauma to your body (and surgery definitely is a trauma), it will take about a year before you feel like it never happened. That isn’t to say I am going to just lay low for a year and feel sorry for myself. However, I do feel that having two major surgeries in such a short period of time has had a profound effect on me even though I may not know it at this moment. I also feel more beat up and more fragile this time around. Perhaps part of that is the let down of having it all over with, too. Friends and family tend to think that the surgery is over with now… I’m okay, and they get on with their lives.. when in fact, this is the period when I probably need the most emotional support. I’m glad to have all of you guys here supporting me, and I know I can count on you when I need you.
By the way, today I had a happy meal and some carrot cake. My tongue was very happy.
Hi everyone.. Yesterday I walked out of the ICU the day after surgery.. again. It took me a little longer this time because my surgeon wanted to make sure my opening was doing well. I can open to about 20mm (bigger than I could before this all started!).
This morning I had pancakes and eggs for breakfast.. my digestive system is a little shocked, so I can only eat a little bit at a time. Now it is time to do the Therabite… I figure eating is a good warm up. My face is REALLY swollen, my Mom says she has never seen it this big before.
I will be posting pictures later today… we lost the cord to transfer pics from the camera to my laptop, so my Mom has to go get a new one.
I know a lot of people are wondering - how do the joints feel? They do not feel mechanical or out of place… they feel quite normal (in a very sore, muscle spasm-y way). The scars are a lot longer than I thought they would be, but they look really good.. My stomach (where they took fat from to pack around the joints to lessen the chance of bad bone forming) doesn’t hurt at all. In fact, in the hospital I thought they had skipped doing that part until I saw the bandage.
Other than that, things are doing ok. I’m hanging in there & have been sleeping a lot. Let me know if you have any questions!
Stace is back at the hotel: real bed, real meds, no beep, beep, beep of the hospital machines all of the time. She CHEWED a grilled cheese sandwich for lunch, YUMMMM! She’s also using the Therabite every hour to improve her opening ASAP. I’m sure she’ll start posting herself soon, surprised it hasn’t happened already.
“Still in ICU, hoping to go home…..opening around 20mm”
That was Stace IM’ing me, so she is up and around…just no access to anything but IM yet. Home is the hotel (for now).
7:30pm: Stace is out of surgery, trying to negotiate going home with the doctor. That’s our Stace. Oh yeah, she can open her mouth wider than ever before.
We love you Stace!!! Congrats!!!!
