Hi all, been a while, I’ve been caring for my partner. I have TMJ disorder from congenital defects plus rheumatoid factors (thanks lupus!) and I think it’s time for surgery. The pain from my jaw has gradually worsened over the past 6 months, I have frequent raging headaches and pain throughout my face, plus the pain often spreads to my ears and down my neck to my shoulders. There are times when I cannot eat on one side of my mouth for an entire meal, or even an entire day, due to the jaw dislocation.
I saw a maxillo facial surgeon 2 years ago and he warned me my jaw’s days were numbered. I tried all the conservative measures and he said the only option left open to me was surgery: completely replacing both TMJs. I have known this surgery was coming, but now that I’m facing the reality of it, I’m coming over all scared!
It’s not just the idea of surgery. It’s the recovery afterwards. Apparently jaw surgery has the capacity to affect one’s singing voice, and as a singer, the thought of surgery negatively impacting on my voice is terrifying.
Has anyone else had jaw complications or surgery? I’m hoping this is not just me! If not, just some reassurance or cat photos would be great. Thank you all!
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Hi I had this once in my jaw for about 3 months, the pain was excruciating and I could only open my jaw about half an inch , it gave me bad earache and I went deaf in the ear for about 6 months, thank goodness it all got better on its own and my hearing is now ok but just wanted to sympathise with you because it truly was an awful time for me. I do hope surgery goes well for you and you retain your singing voice - let us know how you get on xx
Thanks svfarmer, so do I! Thank you for sharing your experience of jaw pain—how horrible to go deaf for 6 months! I can only imagine what that must have been like. Will definitely keep you posted on the surgery.
Have you tried Bowen therapy? I have TMJ occasionally and I get huge help from Bowen movement therapy. I only see the therapist every few years. A few sessions will sort it out. It is also very effective for any sort of muscle issue and fibromyalgia. Please look it up and see if you can locate one (very experienced) therapist near you. It really is worth trying something less invasive before going for a surgery. Good luck to you.
Hi Paprika, yes I’ve tried therapies for the TMJs, not Bowen (although I’ve heard of it) but other forms of muscular therapy, and pretty much nothing works. It’s time for surgery. The problem is my bones are disintegrating from the inside out. There’s no bone marrow, which means the bones cannot heal themselves. Unfortunately this extent of damage means the only thing that will fix it is surgery. Thanks all the same!
Hello. I don’t have lupus but I do have RA and I had both TMJs replaced in 2017. I suffered some non jaw related complications. That said, my jaw joints were literally collapsing and I had no other option.There are more and more surgeons who can replace TMJs but there are only a few centres of excellence who do many of them and who are the most skilled. I was referred 150 miles away. It was tough doing the journey but I’m glad I went with an experienced surgeon. Happy for you to PM me.
Hi crashdoll, thanks so much for sharing your experience. I’m like you: my TMJs are literally collapsing and surgery is the only way to fix that. I have found an excellent surgeon, highly recommended and not too far from me. I saw him two years ago and he said I needed the surgery, and invited me to come back when I was ready to proceed. And now I think it’s time 😬
Hello, I hope your surgery goes well. I know any surgery is scary.
I had serious TMJ for a while, before diagnosed with Lupus. I found that taken glucosamine helped me a lot. I have never stopped taking it since then, (almost 10 years) after a benign tumor was removed from my inner ear and left me with partial facial paralysis. Also acupuncture will help.
Thanks MorIlse, those things might help following the surgery to help with muscle recovery maybe? Unfortunately I do need the surgery, the bones are collapsing and it’s only a matter of time before they completely fall apart. I’ve tried a bunch of conservative measures which have slowed the deterioration, but they were only ever going to stall the surgery, not replace it. Thanks for sharing what has been helpful for you, I’ll keep them in mind.
I have no experience so I can't help you there MFb 🤗🤗🤗Hugs though I can do!! 🤗🤗It sounds like pure agony that you've been putting up with n hopefully the surgery will give you some relief.Let us know when your scheduled for the surgery n we can all send you healing vibes for the op.
Here's a newly born litter of kittens that my friend sent me the other day. She told me that she had said to the owner "If she has a ginger one.. I'll have it"😹So my bestie is getting a new kitten!! 🌈😽😽Xx
Hi KrazyKat, thanks for your kinds words and hugs, and for the completely adorable kitty photo! Sooo cute 😻😻 Thanks for sympathy, I am hoping the surgery will bring some much needed relief too. Will keep you posted. It’s likely to be next year—the prep required takes about 9 months, it’s a complicated process—but I’ll definitely post updates here.
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What a terrible night ! Terrible 2 weeks actually. Support or a kind word from a fellow sufferer would would be lovely. 🌸
