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One of Our Members Tells Her TMJ Total Joint Replacement Story


We received this letter from one of our members and wanted to share it with you.  Please note that not everyone is going to have the same results, but we felt that in light of the fact that we are getting so many questions about joint replacement that it was very important for you to hear her story. 

Hi, I’m 43, a wife and mother of 4 beautiful daughters aged between 16 and 26, I work full time as a tax agent for a small accounting firm. I would love to share my TMJ story with you. It all started when I was about 18, when my jaw locked for the first time. So I’ve been dealing with it for quite a long time, however it’s only been in the last couple of years that I finally did something about it. Basically I put my family first, as one of my daughters has a major disability together with mild mental retardation, so I’ve had my hands full.

Over the years I learned to manage my jaw problems. I learned not to bite into anything or chew chewy foods. My jaw would lock and crunch if I did and as you know this hurt like hell and my jaw would ache as a result. I’ve been on a soft diet for years now. It wasn’t so bad in the early years and I managed it quite easily, however it got much worse in the last 2-3 years. My jaw would lock constantly, even when I was just talking and the pain became constant. I’m not the type of person who says anything to anyone when I’m not feeling ok and didn’t even take any pain killers, or seek medical help. If anyone ever asked I would just say I was ok. I didn’t even tell my husband what I was dealing with until a couple of years ago. However it got to a point where I just couldn’t deal with it any longer and finally went to the doctors. Just my GP to begin with, who then referred me to a TMJ specialist?

The first form of treatment was night splinting together with physio. This lasted about 6 – 8 months with no results. In fact the physio was very painful and just made things worse. So it was back to the TMJ specialist and an MRI was arranged. The MRI showed severe osteoarthritis in the right joint and milder in the left. The osteo had also spread to my skull.  The discs on both sides had completely gone.
My TMJ specialist said I needed a total joint replacement on the right and the plan is to do the left in about 5 years time or earlier if necessary. At this point I just cried and cried, feeling very angry with myself for not doing something earlier.
I asked the usual questions. Such as, what the surgery involve and would it fix the problem. The surgeon did a very good job of explaining what the surgery would be like and said “yes” it would solve my problems. However I feel he let me down in not explaining how long I would take to recover. He seemed more interested in explaining the fact that I would have very little scaring. I’m not the kind of lady who cares about scaring. It’s the other things that matter to me.  He explained I might have facial palsy and I do. I still can’t raise my eyebrow on the right side. He also said I would need 4 weeks off work.
Just as the surgeon had explained, the first couple of weeks were the worst. Swollen, bruised and very sore, the pain killers and sleeping tablets did the trick during this period. I also had great support during this time from family & friends, helping with the household chores & cooking. They were wonderful, cooking soups and other liquid/soft foods to eat.

It’s now been 8 weeks since I had the right TMJ total joint replacement surgery and I’ve been back at work for (full time) 3 weeks now. I would love to have more time off work but unfortunately I’ve run out of holiday & sick pay and just can’t afford too. I’m finding it very difficult at work. Talking to clients, which is unavoidable is very hard. Some days are very difficult, the more I talk the more it aches. I have trouble saying some words, especial words with sounds like “sh” in them.
I can only open my mouth wide enough to get a small spoonful of food in. I can’t even fit 1 little finger between my teeth. My jaw just aches all the time. I can’t even laugh or smile without making my face ache.
I visited my surgeon this week and asked two basic questions.

  1. Is this pain normal?
  2. Can I ever expect to be pain free?

His answer’s were as follows:

  1. Yes the pain is normal, he said it’s was because the muscles are trying to re-attach themselves to the prosthesis and the more I talk and use the jaw the longer this will take to heel. It’s also muscle spasms.
  2. In regards to the prospect of a pain free future. His answer was less definitive. He just said “That was the goal”.

He also went onto say it could take 6 – 12 months for a completely recovery. I just wasn’t prepared for that!!!!!!!!!!!!!!!!!!!!!!!!!
My close family are very sympathetic; however they just don’t understand how hard this all is. I’m very tired both physically and mentally.
I admit I should have done more research before the surgery. I only just found your website this week. I just trusted by Doctor’s/Specialists. It wouldn’t have changed the fact that I needed to have surgery, but maybe I could have been more prepared.
I start physio next week and I’m very anxious about it, I’m concerned that while it will help with the opening of my mouth, it will cause more pain. Basically I’m just not looking forward to dealing with more pain.
Thanks for listening
Thanks for your wonderfully informative website

3 thoughts on “One of Our Members Tells Her TMJ Total Joint Replacement Story”

  1. Hi, I have some decisions  to make and I’m not to sure what to do.  I tried braces, I am using a stint (something that holds my mouth open a bit at night so my back teeth do not touch), I have had what some people call surgery where my TMJ doctor cleaned and used a couple of things along with Botox to eliviate my pain. Once the Botox wore off the pain was back but from what I’m reading in no way the pain that others are talking about.  My jaw does not lock often.  My ex-rays show that I have almost no bone left in the joint so they can’t even replace my discs.  I was told I am one of 14 people who would be recommended for surgery.  If I’m not in as much pain as everyone else is describing even as bad as my TMJ is should I really go through the surgery?  Both my dentist and TMJ speacialist say if the botox is working stick with it but I don’t have the $550. every 3 months to redo the botox.

  2. I am sorry to hear about your suffering, I understand. I have a malformed condyle and the discs/ligaments are deteriorated/destroyed from being crooked. Like a door on uneven hinges. I have had orthognathic and exterior “cleaning” surgery. Sinus surgery twice. I’ve had braces twice, splints, Botox/trigger point injections. I’ve used every pain reliever/cream I can think of. I’ve even had all of my teeth crowned/root canaled to level my bite and restore damaged teeth. I now suffer with debilitating subluxation resulting in trigeminal nerve irritation that negatively effects vision/sinus/throat/ears. Now, I am faced with the option of joint replacements on both sides. Living with all of this pain may be no better than living with what you have gone through. I’m just not sure what to do. It is helpful to find others who suffer like I do. Having a supportive family is a blessing, but fighting to stay positive and focused on less painful days ahead, is a constant struggle. I’m praying for your continued recovery.

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