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  • Fed up with TMJ!

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    Old 04-10-2017, 04:27 AM   #1
    lilm92
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    Fed up with TMJ!

    In January 2013, after getting home to my house with my boyfriend after a date, we were lying in bed talking when I needed to yawn. I realised I couldn't open my mouth fully to yawn. Away from home at university and at 20 years old all I wanted was my mum to tell me everything was ok. I was petrified. After 10 minutes of trying an almighty crack came from the joint and movement was restored. I thought it might have been just the way I was lying and it was a once off, but boy was I wrong!

    Over the next few months the jaw locked and unlocked repeatedly. Each time an almighty crack that could be heard from another room in the house, came from the joint and movement would be restored. I finally told my mum the problems I had been having and I made an appointment with my dentist to see if he could see a problem.

    His thoughts were that I was grinding my teeth in my sleep and was fitted with a plastic mouth guard and an appointment to see the Oral Surgeon as a precaution. Well within a month I had bitten through the guard and had been sent for an MRI. The diagnosis was stress and muscle spasms. Nothing that a good old dose of Diazepam couldn't fix. Any time I had a flare up, I was prescribed it. I was relaxed and never realised how entertaining working on a checkout could be when I had taken it.

    After 2 months, the diazepam seized to work. I will give you a background, I am a very stressed out person with a lot of problems in my life. I had a severe back injury which meant damage to a disc and sciatic nerve, I lived with a group horrible people who made my life hell and then had an alcoholic parent at home who I didn't see sober for 3 years when I was a university. He could become very nasty and I dreaded having to be home encase he kicked off. Of course I was stressed but I knew this was nothing to do with it. I was on antidepressants and CBT therapy to resolve my issues and they were working.

    Finally another repeat visit to the Oral Surgery they moved onto exercises and heat and a soft diet. I continued this but in October 2015 my jaw locked.....for good. This began months of severe pain wakening me up in the middle of the night and making my waking hours miserable. I had lost 3 stone on a diet and 4 more stone dropped off due to the inability to eat. I was scared of looking sickly and my family's concerns at my weight loss was apparent.

    This began a series of appointments with the Oral surgery team and was started on Amitriptyline 10mg at night time. I was told that this miracle drug was going to be the cure to my ailments. The relief and cure never happened. I was better off eating smarties than I was taking those. Then came the suggestion of Botox in October 2016. I was reluctant. I had done my research and I was not happy with what I was reading. The doctor had convinced me that this was all reversible and it would be worth a try so I listened, something that I would later regret.

    Within 4hours of being injected with the botox my face was swollen and immense pain and pressure filled the left side of my face. I felt the only relief I would get would be to pull out my teeth. I lost the ability to smile on my left side. My mouth motionless and drooped and this made eating a greater task than it had ever been. I hated photographs, I hated smiling in front of people and I was miserable and yes the ever present shadow of depression that lurked behind me for years was beginning to raise it's ugly head. Even now 6 months down the line, I do not have full movement or feeling in the left side of my face. On review they had realised that a nerve had been hit but they were shocked that I had felt no relief.

    I was finally referred by a different hospital to get an MRI done. In the meantime I returned to the hospital to get a second review following the injections of botox. I explained that I had been in a lot more pain and I couldn't cope anymore. The doctor (not the consultant who carried out the procedure) told me 'Well this is something you are going to be living with for the rest of your life so you will need to live with it. You are not a candidate for surgery and we are discharging you.' I have never been more upset in my life. The thought of having to deal with the daily pain for the rest of my life was an awful thought. I am only 24 why should I have to deal with this when I was promised they would try the next steps if the Botox did not work?

    The MRI took place and I was invited to the 2nd hospital for a review. They were able to see the results and my restricted movement and they were able to decided within 2 minutes that I was a candidate for the arthosentesis but I would have to be referred back to the initial hospital to get it done.

    Finally I felt like I was getting somewhere. 3 months later I was at my appointment for a presurgery check. The consultant was called by the reviewing doctor, who was amazing. Not a doctor who I had met before but was compassionate and cared about her patients. The reassurance of 'I want to get to the bottom of this to stop this pain' meant so much. I was crying in pain when they touched the joint and he finally agreed that yes I was a candidate.

    So now I am waiting on my urgent referral for the Arthosentesis and I am just praying that it is soon and that it works. This has been going on for 4 years and I am fed up of the daily pain!

    Last edited by lilm92; 04-10-2017 at 06:43 AM.

     
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    Old 04-10-2017, 06:26 AM   #2
    marku1999
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    Re: Fed up with TMJ!

    Wow! Just WOW!
    I am so sorry that you are going through this. I really wish I had something, anything of value to add to this.

    I wish you the best, and truly hope the surgery relieves your pain.

     
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    Old 04-10-2017, 06:33 AM   #3
    lilm92
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    Re: Fed up with TMJ!

    marku1999

    That is so kind of you. Thank you so much

    lilm92

     
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    Old 05-08-2017, 03:54 AM   #4
    lilm92
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    Re: Fed up with TMJ!

    ***New Update***

    2 weeks ago I received a letter to say my post op appointment will be on Tuesday 9th May and on Friday I received a letter to say my arthosentesis operation will be on Friday 12th May!

    Petrified, nervous and excited is what I am feeling right now! I really hope that it works and the pain and discomfort will be over!!!

     
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    Old 05-08-2017, 07:07 AM   #5
    marku1999
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    Re: Fed up with TMJ!

    I really don't know much about the procedure, but I hope and pray it helps you. It's horrible that people have to suffer with pain like this.
    I completely understand being nervous, I think any rational person would be.
    However; this could be the start of a whole new life for you!

    Hopefully you see improvement quickly and get significant relief soon.

    Best of luck to you!

     
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    Old 05-08-2017, 08:51 AM   #6
    tmjineedamiracl
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    Re: Fed up with TMJ!

    I wanted to wish you luck with your surgery Lilm92. I will say some prayers that all goes well, and I wish you a speedy recovery. Please keep us posted on your progress.

     
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    Old 05-13-2017, 12:08 AM   #7
    lilm92
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    Re: Fed up with TMJ!

    Quote:
    Originally Posted by tmjineedamiracl View Post
    I wanted to wish you luck with your surgery Lilm92. I will say some prayers that all goes well, and I wish you a speedy recovery. Please keep us posted on your progress.
    You are so kind thank you

     
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    Old 05-13-2017, 12:15 AM   #8
    lilm92
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    Re: Fed up with TMJ!

    So surgery that was supposed to be 45minutes (bilateral arthocentesis) turned into 2 and a half hours.

    While they were cleaning out the joint the clean out was a struggle. Turns out I have fibrosis in the jaw joint. Not common but can happen with a closed lock that has been going on for some time.

    20hrs after surgery I feel like I have been hit by a bus. From my head down to my back is very achy and it is taking time to find the find strength of pain killers to help. The spasms are bad and I am black and blue and rather swollen. It also didnt help that I had to be intubated through my nose due to the closed lock. One of the most horrible experiences of my life because I had to be awake to get this done. Although they gave me medication to help to be unaware of what was going on, I remember quite vividly having liquid put up my nose, having to sniff it and the feeling of choking was horrific:

    I am so glad to be home in my own bed and I am hoping that it will work!

    Last edited by lilm92; 05-13-2017 at 12:17 AM.

     
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    Old 05-25-2017, 12:32 AM   #9
    lilm92
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    Re: Fed up with TMJ!

    So 13 days post surgery and I am feeling so much better.

    Still a bit of bruising and some pain but nowhere near the extreme that it was. Haven't notice much change in movement but they have told me that it will take about a month to notice any changes.

    Review appointment on 21st June so fingers crossed that it is good news for me!

    For anyone get arthocentesis I would advise to make sure you have the following:

    - Loads of pillows to keep yourself propped up
    - The strongest pain relief your doctor can give you. I wasn't just sore in my jaw. It was my eyes, head, back, neck, shoulders and ribs.
    - If you can get a muscle relaxant, get it! The spasms in the days after the surgery aren't great.
    -Make a soft food diet plan for around a month. I may have movement and less pain but any kind of chew in food makes my mouth extremely tired and I can't eat any more.
    - Hot water bottles will be your best friend! Believe me.
    - If you bruise easily like me, have Arnica cream to reduce the bruising.
    - If you are working you need to take the time to heal. The doctor had told me I would be back to work in 5 days. It took 12 days before I felt like I was fit enough to return for a full day. Even then, I am still exhausted after work and I am still sleeping quite a lot.
    - If you have a closed lock and they have to intubate you through your nose, they will give you stuff to relax and forget but the things you do remember are not pleasant in the slightest but it is over in a minute.

    Take care

    M

     
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    Old 10-03-2017, 05:03 AM   #10
    lilm92
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    Re: Fed up with TMJ!

    ***New Update***

    So we are now on 3rd October 2017.

    In July of this year I attended my post surgical check up to find out if I was recovering ok. Up until this point, the movement of my jaw had not changed in the slightest bit so I knew I was in for some bad news. That didn't stop the tears on the day.

    The consultant walked in and going by the expression on his face, I knew the battle to stop the pain was no where near over. The scar tissue and fibroids are so severe in the joint that the washout solution could not even be injected into the joint. Meaning I am back to square 1.

    So next plan of action is to try a different method of Botox. If this fails to work, then it is major surgery involving the jaw being broken, scar tissue removed manually from the joint and then stitched back up again. No one, including myself and my doctors want to go down that route, but if they have to, it will be in the new year.

    I had myself ready and mentally prepared for my injections on 23rd August, sat in the hospital for 3 hours to be told the injection was not available that day. Currently awaiting a new appointment date to get this done. To say I was devastated is an understatement.

    I hope all of you with TMJ are getting some relief with your treatment!

    Take Care

    M

    Last edited by Administrator; 11-12-2017 at 04:48 PM.

     
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    Old 10-03-2017, 06:19 AM   #11
    marku1999
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    Re: Fed up with TMJ!

    lilm -

    I really don't even know how to respond to your post.
    Normally I would say I'm sorry to hear this, but that doens't begin to convey how bad I feel for you.

    I tend to not read the forums daily as it gets heavy at times - and this is one of those times. Know that you are not alone in your fight.

    I hope that you can find the appropriate care and get some relief. It really only takes one doctor to find the one thing that will help, and it does happen!
    I won't make this about me, but I will say I have been seeing a new doctor. I was waiting in the waiting room at his office and spoke to several of his patients that had their lives changed by him! It was utterly overwhelming to hear directly from these people and how drastic their improvement was! It gave me hope that I too could get well again - and with the right care hopefully you will to.

    Hope and prayers are with you - be well!

     
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    Old 10-03-2017, 08:25 AM   #12
    lilm92
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    Re: Fed up with TMJ!

    Thank you so much. It was really sweet that you took the time to reply to this. Just seems to be one disaster after another for me at the moment.

    I wish you well with the new doctor and hope that he finds the best treatment for you!

    Take Care

    M

     
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    Old 11-12-2017, 03:56 PM   #13
    Aphelion111
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    Re: Fed up with TMJ!

    Hi there,
    Thanks for sharing your experience and story.
    I have been going through a very similar issue to you (and on an almost identicle time scale, for this year at least)

    Have you managed to have the botox injections yet? Let me know how that goes.
    One word of caution though: my ortho advised me against having anything injected directly into the joint itself, as this has been known to damage the tissue further. I can’t say if this is true for all case, clearly it is not. I just thought I ought to offer that piece of information because this is a horrible condition to have, and if I can help someone else out who has it, I will.

    Thanks again, have a good week.
    Marlon

    Last edited by Administrator; 11-12-2017 at 04:52 PM.

     
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    Old 11-29-2017, 11:46 AM   #14
    lilm92
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    Re: Fed up with TMJ!

    Quote:
    Originally Posted by Aphelion111 View Post
    Hi there,
    Thanks for sharing your experience and story.
    I have been going through a very similar issue to you (and on an almost identicle time scale, for this year at least)

    Have you managed to have the botox injections yet? Let me know how that goes.
    One word of caution though: my ortho advised me against having anything injected directly into the joint itself, as this has been known to damage the tissue further. I canít say if this is true for all case, clearly it is not. I just thought I ought to offer that piece of information because this is a horrible condition to have, and if I can help someone else out who has it, I will.

    Thanks again, have a good week.
    Marlon
    Sorry Marlon, I am just getting back to you as I have had a very busy few weeks and haven't had any chance to look at this thread.

    As of yet, still no sign of this needle for the botox. It is not going directly into the joint but closer to the muscles surrounding it. It has never been done here in Northern Ireland and has been trialed in Sri Lanka where my doctor is from.

    Thank you for taking the time to post. I hope you have some relief as well. I will probably update this thread when I finally get the botox

    Take Care

    M xx

     
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    Old 11-29-2017, 11:48 AM   #15
    lilm92
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    Re: Anyone else have severe cheek twitching from TMJ

    Hi,

    It sounds like what mine started with. Muscle Spasms. I think you need to get on a light muscle relaxer to see if that will help!

    Do not drink caffeine at all as this (personally) flared mine up a lot more. I am sorry that you are going through all this and I hope you get some relief soon.

    Take Care

    M

     
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