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TMJ Disorder -TemporoMandibular Joint Message Board

  • Fed up with TMJ!

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    Old 12-06-2017, 03:55 AM   #16
    matty662
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    Re: Fed up with TMJ!

    Hi there,

    So sorry to hear about your condition. I have been suffering with TMJD for about 1-2 years and have just recently decided to act on it. You've basically said you have had almost every treatment without success and i have a suggestion.

    Have you heard of cerezen ear canal inserts? Search it up im currently thinking about getting a consultation to discuss this. It basically helps relax your jaw muscles, but not sure if it actually addresses the problem but just the symptoms.

    For me i have a protruding lower jaw, which means my lower jaw permanently out of the socket. Im thinking splints are better for my condition.

    Anyway hope this helps and good luck.

     
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    Old 12-06-2017, 10:21 AM   #17
    lilm92
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    Re: Fed up with TMJ!

    Quote:
    Originally Posted by matty662 View Post
    Hi there,

    So sorry to hear about your condition. I have been suffering with TMJD for about 1-2 years and have just recently decided to act on it. You've basically said you have had almost every treatment without success and i have a suggestion.

    Have you heard of cerezen ear canal inserts? Search it up im currently thinking about getting a consultation to discuss this. It basically helps relax your jaw muscles, but not sure if it actually addresses the problem but just the symptoms.

    For me i have a protruding lower jaw, which means my lower jaw permanently out of the socket. Im thinking splints are better for my condition.

    Anyway hope this helps and good luck.
    Hi

    Thank you so much for the suggestion. That was one of the options in the initial treat but following the results of an MRI and then what was finally confirmed during surgery was the condition was way to advanced. Sadly loads of scar tissue has built up as well so the implant was pointless according to the consultant.

    I really appreciate you taking the time to post. I also want to wish you the best of luck with the start of your treatment journey and I do hope you'll find something that works for you.

    Take Care

    M

     
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    Old 12-19-2017, 09:34 AM   #18
    matty662
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    Re: Fed up with TMJ!

    lilm92

    Hi sorry for late reply been busy. Erm I just had a consultation about cerezen treatment. It supposed to help relax you jaw so you don’t clench and they are not implants. They’re basically ear plugs.

    So what are you doing about your situation atm then if nothing is working? Hope you find a solution best of luck keep us updated

     
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    Old 12-19-2017, 10:28 AM   #19
    lilm92
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    Re: Fed up with TMJ!

    Quote:
    Originally Posted by matty662 View Post
    lilm92

    Hi sorry for late reply been busy. Erm I just had a consultation about cerezen treatment. It supposed to help relax you jaw so you don’t clench and they are not implants. They’re basically ear plugs.

    So what are you doing about your situation atm then if nothing is working? Hope you find a solution best of luck keep us updated
    Hi,

    Thank you for the message. They referred to them here in Ireland as removable implants but because the damage was already done there was no point.

    At the moment I'm just waiting for an appointment to get a brand new method of Botox. I'll be the first in Ireland to get it done as it has only been used in Sri Lanka. If that doesn't work, it will be major surgery involved the surgeon opening up the joint and manually cleaning it and resetting the jaw. No one wants it to go down that route because the risk of infection and nerve damage is very very high.

    Fingers crossed it will be soon. I want to wish you the best of luck with your treatment and hope you find a successful one.

     
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    Old 06-12-2018, 02:03 AM   #20
    lilm92
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    Re: Fed up with TMJ!

    **Update**

    So after 9 months of waiting for a specific needle, it was finally time to get the botox appointment rescheduled.

    On Wednesday 30th May 2018 I was admitted to the hospital for the day procedure. Nervous, anxious, hope, and about 10 other feelings. I was waiting for about an hour and then it was time to go. The needle was 5cm (yes 5CMS!!!!!!!) and the surgeon said to me 'A lot of people can do this without a local anaesthetic so we will give it a go' (I don't know how he was able to say a lot of people as this has only been trialled in Sri Lanka to a handful of patients with TMJ). I could feel each layer of skin and muscle getting poked through by the needle and when I thought I was going to pass out, I had to get him to stop.

    Queue local anaesthetic........

    I have never had a filling or needed any prior dental procedures and my word that is the weirdest feeling in the world. My face felt like it was out like a bap.

    Even after the local anaesthetic had kicked in, the procedure was very uncomfortable. The pressure in my face was unbearable and I genuinely thought that at one point the needle was going to come out through my teeth. Thank god for my lovely nurse holding my head and wiping away the tears and for the angel that is my mum who held my hand even though I nearly broke her fingers from squeezing them that hard. I can now say I am the first person in Ireland to receive this kind of procedure for TMJ (do you think that could go into a book or something?)

    So two weeks post procedure and I am in a lot of pain. I was discharged from hospital on CoCodomol 30/500mg and I tried to reduce this to CoCodomol 15/500mg. This was a bad move and after 4 days with little to no sleep and being in pain near enough constantly and also moving house between all of this, I am just exhausted.

    Back next week to see the outcome of the botox to see whether the 20mm jaw opening will have improved and whether or no they will be completing it on the other side.

    Hope you are all finding the help and support you need to get you through this pain in the *** of a condition.

    Take Care

    M

     
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    Old 09-24-2018, 03:09 AM   #21
    lilm92
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    Re: Fed up with TMJ!

    **Update 24th September 2018**

    Hello Folks,

    Well it has been a long time since I have updated everyone. Well after getting the botox done in May, I was sadly told that the procedure was unsuccessful as they weren't able to get down to the muscle. The next thing to do was try again to see whether or not a second dose would hit the muscle and get the results that both I and the consultant wanted.

    The morning of 25th July I was a bit more apprehensive than normal. I don't know whether or not it was because I know I didn't tolerate the procedure very well last time or whether I knew in my head something was going to go wrong. I sat in the chair, signed off the consent forms and got myself comfortable waiting for the consultant to arrive.

    The consultant began to insert the needle into my face and seering pain in my ear and jaw followed. Then sharpness, in my gums and on my tongue. The realisation hit me. The needle that was inserted beside my ear had pierced right through into my mouth. The consultant didn't believe me initially until he let go of the needle still in my mouth and had a look. He tried again and the same thing happened so in the end he injected through my mouth with the needle going towards my ear. Then the panic attacked started. The nurses rushed with a paper bag and fans on me as my colour disappeared and I couldn't breathe. The nurses who work in that department are honestly angels and I couldn't have gone through all of this without them.

    Once I got home the realisation of what happened all hit me at once and I broke down in the middle of the kitchen and my mum had to pick me off the floor. I was in a lot of pain and shock. The pain only got worse over the coming days and after 1 week of no sleep and no food, I had to contact the hospital. After spending about 4 hours there, I was told that I had a blood clot following the injections and was given nerve pain injections and a blood clot dispersing injection to help. I have needed this every 2 weeks since because of the pain I have been in.

    So now, on Friday 28th September I am going in for my second round of Bi lateral arthocentisis to see whether the fibrosis and scar tissue has broken down enough to actually been cleaned out. I am hoping this will help and allow me to eat properly again. 9 and a half stone thinner that what I used to be and I am beginning to look too gaunt. I want to look healthy again and not have a flat bum anymore lol.

    Hope everyone who is receiving treatment for this condition is getting successful results.

    Talk Soon

    M

     
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    Old 07-22-2019, 04:15 AM   #22
    lilm92
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    Re: Fed up with TMJ!

    **New Update**

    Hi Everyone, it has been a long time since I have been on here and there has been a few developments.

    In September I had the second round of bilateral arthocentesis and the new botox method all while under anesthetic. Recovery was long and on my 6 week check up my situation hadn't change. 18mm opening of my mouth and still in a lot of pain.

    Coming up to Halloween I was fed up and ready to curl up into a ball. Halloween night and all the Trick or Treaters had come and gone and I was left with a lot of chewy sweets left over. Knowing full well that it would hurt to eat, it had been so long since I had a Refresher bar and I couldn't resist temptation. Slowing chewing and in a bit of pain I sat and watched a scary film then all of a sudden *crack* from the joint. The pain jarred me and I was hesitant to move my mouth but knew I had to and to my surprise, the jaw opened fully.

    I rang my mum and my boyfriend with pure excitement and exclaimed about how I could open my mouth. I was so excited and the fact that over the next weeks it stayed opened it was amazing (still sore but movement). I was able to enjoy a proper yawn and eat a burger and burrito for the first time in years. (A KFC burger when you haven't had one in 4 years was like having fillet minion).

    From them I have had a few blips. Jaw seizing up for a day or so but with the help of medication it seems to unlock no problem. I have noticed the jaw slipping out of place in recent weeks and so rang the hospital as I was due to see my consultant in February and hadn't heard anything. My consultant (the only person in NI who was trained in doing the botox the way that unlocked my jaw) had left the department and was now working in Dublin. I haven't met my new consultant as of yet nor have a got an appointment (July 2019) so I am nervous to see what he can offer should the problem return which is a high chance.

    I am still suffering from anxiety and depression and have recently been diagnosed OCD and PTSD from almost losing my dad in April but I am trying to get on top of it now before it affect my jaw the way it has been.

    I hope all of you who are suffering find the treatment to help you and those who haven't found it yet, be patient it will come although that is easier said than done.

    Take Care

    M x

     
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