I haven’t been on here for ages. The last article I read was about medical professionals thinking you are crazy. I’ve been having a hard few months. After two years of this problem I can only feel for those that have been living with it for years. Well guess what? I have been told something today that gives me hope and I wanted to know if anyone else had been down this path. I live in England and after a year and a half I managed to get an MRI on the NHS and they found nothing. The consultant I finally got to see was quite patronising and I actually got quite upset because he was talkig about relaxation methods and more drugs but I swallowed it and stopped coming on here or doing much else but trying to accept it and being in physical and mental pain.
A friend of mine who I cried to listened and did some research and I went to a private hospital to have a moving MRI with the mouth open. They found on the left side my articular disc is stuck into position hence my two finger opening. The muscles all over my face and neck are inflamed and they are pressing down on the 5th cranial nerve (TN) the disc would normally be pulled back and forth freely so your jaw opens and closes correctly. Some peoples articular disc can be stuck to varying degrees. It can’t be seen on a standard MRI the mouth needs to be open, they also have to know what they are looking for. Basically trying to open and close a joint that has the disc on the wrong place leads to a myriad of muscular and nerve pain to varying degrees.
Their next step is botox injections in the face and then after that somethin called an anthroscopy where they flush the joint out to move the disc back. If that doesn’t work they have to do open jaw surgery to repair the anthroscopy.
Anyway the guy sat down and told me everything
Fibrous thickening on ligaments
Swollen muscles on left side pressing on nerve getting worse due to the disc.
Disc stuck up in my head almost
I’m at home feeling elated and joyful and want to
Know if this is commonly known and also whether it could be an unseen problem that others may have if they have only had a standard MRI or the wrong person looking at it.
He said this is probably due to injury even a slight tap can dIslodge it. He also said I have slight hypermobility which by lay mans terms means double jointed. He said these peoples joints can get more easily damaged and even if you are unable to touch your toes you may have things like being able to touch your Tongue to your nose ( I could before his!) or other party tricks. I bent my thumb back for him and he said 'that… Is not normal) my mum is super flexible. JuSt trying to give as mch info as poss in case it helps or rings any bells x
What an amazing story! Congratulations. This is totally new to me. Fascinating. I really hope your treatment works. Thanks for posting.
Peace and Happiness
Bellalarke
I rang my surgery and asked for the letter the consultant sent the first time and I am glad I didn’t read it before I received the report from the private specialist as it would have devestated me. They don’t have any guarantees but I feel more hopeful and thank you everyone for your support since I’ve joined.
Thank-You I’m going for the botox treatment on Saturday. I’m sorry what I’ve written isn’t very scientific! I’m happy to post MRI findings report etc when I get the more detailed one or send it to anyone who is interested in looking into it. Are you in the Uk blarfballs? Email me if you want to x
I had joint surgery of the tmj in '86...oh yes, very possible for this joint to do what you are having. I did have atypical facial pain but that did not go away after surgery, deep ear pain did, but 4 years later the facial pain went into remission. I think you are on the right track and thank you for posting, I may have to have my tmj joint checked again and you are right, MRI doesn't get the whole picture, they do have to a test moving that joint to see where the menicus is...mine was torn and forward of the joint. I do hope you get some good results with a surgical approach, sometimes splint therapy can get this menicus positioned correctly and botox can be helpful, however it is only temporary and I did hear even if it helps you reach a threshold where it no longer works. Surgery is a big deal with this, ask about your occlusion after surgery, mine changed and it took years in braces to correct it. Good luck to you and happy you have some hope in your back pocket. Sharon
Thanks Sharon
I am hopeful I just want some kind of decent quality of life and it makes my head feel like a clenched fist at the best of times. At least now I know why. I know surgery is a big deal on the jaw but I just want the pain to go away and like you say there’s only so much botox or pills can really do. Thanks for sharing your experience where are you with yours now?
Marie, they can correct the joint with surgery if you still have a menicus maybe forward or torn but I know women who had perforated menicus, torn to pieces and there results were not as good. But be aware it can change your occlusion, how your upper and lower jaw meet or your teeth come together. Also, you are seeing a surgeon, they see the joint problem but because tmj is a muscle problem too you should be in pt to get the jaw moving again, banding of scar tissue starts before he closes you up and they need to be broken. I remember hearing them pop in my ear on yawning for several years. I just reread your post, if you a lot of inflammation ask for something to reduce that, a non-steroidal or maybe even a medrol dose pack which is prednisone.
I may be getting this joint checked out again for facial pain but I think I may be GN, it is going to be hard for a doc to dx me with my history of tmj and cervical fusions. You asked how I am doing since my surgery. I have a very limited opening, about 28 mm, normal is around 40 something, that will never change. If I don't think about it I always feel tight around my jaw and ear, muscles feel tight, still dealing with neck and headache pain. But this was not constant, only over the past year and a half I have gone back to headache and neck pain but I don't think it is the joint, just the muscle problems from a limited opening. I am also dealing with a type of geniculate neuralgia, and ENT just referred me to a surgeon for that one, not a neuro, an otoloryngology surgeon, ear, nose and throat. I think the GN has aggravated all the muscle problems with tmj again but my joint is quiet. I do recall having facial pain and my surgeon did not understand this, it was atypical but I know it was in the trigeminal branch, not stabbing pain, it did go away but it took almost 5 years to leave. I never had swelling in my face, I think that is definitely a cause of your facial pain and that joint can do it too. I think you will have some good results correcting the joint problem and getting that swelling down...don't expect a miracle from this surgery, get working on those muscle problems and botox is an excellent therapy but you have to see a good pt that understands tmj to work on the muscle problems. You did not mention this, but when my joint was bad I had deep pain in my ears, like a screwdriver was being driven into them. How do your ears feel? My ear pain went away immediately after surgery but still had the muscle and facial pain. It was worth it to get rid of the deep ear pain. Overall, I had to go through a lot to correct the occlusion, braces in my 30's, work with muscle problems and 5 years later I would say I was 80% free of the pain it was causing me.
I may be right back where you are if this new ENT surgeon can't help or very possibly they will want to rule out a joint problem again. Good luck to you and I will keep up with your posts. There is a rumor this tmj thing was a disease of the 80's, so glad you are getting the help you need and it seems you have a very good doctor. Take care, Sharon
e doc, taking time to really talk to you.
Thanks Sharon
It all sounds very daunting. Yes I have had the ear screwdriver pain there are so many different pains in different places it’s like it’s a broken machine firing our random shots I suppose. I can open mine to 15mm according to the consultant as the disc is stuck right at the back and hasn’t moved since the beginning. I’m worried about the future sometimes I’m only 29 and haven’t had kids yet and just got out of a long term relationship that I just feel quite paralysed about I was just hoping this might help. Thanks for the information
Marie
Hi Marie, wow, I was 29 when I had tmj surgery, but already had 2 children, my pain started when my son was 4 and I went through a pregnancy and had a daughter, she was about 3 1/2 when I went through the surgery. Now that I know you have a menicus that can be repaired I believe you have a very good chance of having a successful surgery. Do ask if the surgeon uses a type of implant to buffer the bone to bone, I had a small piece of silicone implanted and it was not good....I got ill from it, just like the women who had silicone breast implants, Dow Corning was the manufacturer of these implants, went out of business because a class action suit was filed against them...however, the science on studies disproved this implant causes auto-immune disease and they are using the breast implants again.
TMJ is disabling, you can get disability for this one. Don't be discouraged, just know if surgery corrects the joint there is still a long process of correcting the muscle problems, they will not go away overnight after surgery. The ear pain will go away, and if you have all this swelling, that may go away with the help of anti-inflammatory meds like prednisone for a short period of time then a non-steroidal and certainly if the joint is repaired you should move forward with this one.
A good pt that understands the muscle problems should know how to do intra-oral release of the muscles that are in spasm and the neck and head. Moist heat, cold, whatever feels good. With all that inflammation cold is probably best.
Don't expect surgery to eliminate all the problems overnight, good pt after surgery is very important, even start now before surgery. You have a very limited opening, also a non-chew diet will follow surgery, I would assume with that limited opening you are on a non-chew, soft-chew diet.
That little joint can cause a lot of pain, be hopeful, you still have a menicus I believe can be stretched and pulled back into the correct position and surgically sewn back where it belongs.
I do understand being young and in so much pain, wondering if you have a future ahead of you with marriage and children. I am 57 now and if I told my history which I won't you would be very discouraged. I do however believe my tmj surgery was successful overall so don't be discouraged. They know more now than they did in the 80's and understand all these different pains in different places. I believe you have a very good chance of getting this corrected by surgery and then on to pt for all the muscle problems is a must. You did not get this way overnight, it will take some time to get a handle on it. But you will, I did. Keep posting, don't get paralyzed with fear, emotions play a big role in these muscles, stay strong, optimistic, and try to smile every day even if it hurts. Think of me as your mother, my daughter is 30 and she has mild tmj, I will be by your side through all of this, promise, your future will get brighter.......they know what it is causing the major problem and surgery can help. You are also in the right place, this support group is one of the very best things that has happened in my life, as I write my pain is approaching a 7 but I have been dealing with chronic pain for a long time, you do learn how to function...I do not have TN, when I read some of the posts of this horrible pain others suffer from and have for years, I have something that is not as bad as that, but we are all unique to our pain complaints. Chronic pain, severe chronic pain is what it is, and my pain and your pain just plain hurts like hek. I have dealt with my entire lumbar spine crumbling on me, unable to walk, 10 plus surgeries, I am as stable as I can be with that one, but I have to admit this one will rest when I get off my legs...HEAD pain won't let me rest, I do believe I hate this one the most!
Marie, you have a good doctor that understands this and hopefully will know how to correct it. I had open joint surgery, if it can be done through an arthroscope then great, less scarring.
I am glad I found you, I can help you through this, this is what we all are here for on this page, share and support. Again, think of me as your mother of tmj, I will not abandon you. You are so very young and you do have an entire future ahead of you, I went on despite chronic pain and raised 2 wonderful children and I am now a Granny of 3, 2 grandsons and just got a granddaughter, and I do enjoy them. I am also widowed but I did have a wonderful marriage...all of this is possible for you too. Sharon
Marie, I think I missed something with you, do you have TN with this? Stabbing electric shock-like pain. Sharon
Hi Sharon
Yes mine is thought to be injury related and the tn pains are worse in the cold weather and certain stressful situations. I can definitely feel the difference between the muscle pain and the tn and have said right from the start to doctors that they are two separate problems for me even though they are probably related.
It could just be that they ease up if this could be repaired? I’m not expecting miracles I just need some light really
Marie, you are on the right track with this, your tmj can be causing the TN I believe. Get the joint repaired, do ask all the questions I proposed to you. Will there be a change in my occlusion, bite? Does he use an implant after surgery in the joint while it heals? If so, when I had mine done, it was left in for 6 months and should have only been in for 2 months and what type of implant? It may take some time for the TN to settle down and the muscle problems, I do hope your TN will resolve, I have read some info about that tmj joint putting pressure on that nerve. I think your tmj is related to the TN, I do hope it is not a separate problem. You will see some light at the end of tunnel with this, stay positive and hopeful. Sharon
Thanks sharon 
Yes it is all connected I believe due to the way it started. The tn pains started few weeks after the initial jaw ache and lock. The muscle pain is very sore and causes headaches and pressure and makes everything feel swollen and causes pain down the muscle at back of neck and all over left side of face. The nerve pain seems to lie dormant during these summer months and then hit very badly during the cold weather electric pains, stabbing pains, trickle liquid feeling pains sometimes so debilitating I’ve been on the floor. It’s like there’s a little demon in my face and then it goes to sleep for a while but once it’s triggered it’s relentless. I do get epsiodes during the summer but in the winter it’s like hundreds of times a day so I am sure the two are relates due to the muscles becoming even tighter in the cold weather ad their location in relation to the nerve.