Hi i'm marylee. I'm a 50 yr. Old lady who is also a nurse.. I just found the tmj site. And posted a few ... But forgive me if I already wrote to you. I'm just so excited that I finally found someone who has the same problem.. What kind of implants are they?? I had silastic ones that ruined the bone. Not to say they are all bad... No................ Please write to me.. Thank you

Hi tealady,
i'm so sorry you are going through all this. Tmj itself is a nightmare but the condyle problem has got to make it worse. I'm no expert with the surgeries as I have not had any in the 25 years of this, but I think you are probably on the right path. You have to be able to use your mouth and I would think condyle problems would hinder that.

I used to think I had it so bad because I had so much pain over the years and can not open my mouth too much. I've also had a lot of problems finding "experts" to help me. I did not use hard-core drugs (opiates) until recently and it was a nightmare trying to find a pain manager in my area. If it hadn't been for a new neurologist from a major university moving part of his practice here recently, I wouldn't have any help now. I have just started with him and take 10 mg of methadone but that will increase slowly, thankfully, as I am still in pain a good 70% of the time.

I guess if I had been willing, I probably could have driven 2 hours one way to a big city to find an "expert," but with my past experience with supposed knowledgable tmj "specialists" and having a major problem with leaving my house and driving, I haven't. I don't have a social phobia, but it is close. Mind you, I do work full-time, but I only have to go 2 miles one way to work.

How long have you had tmj? What have you had done? What have you done so far for help? Isn't it amazing how many "experts" really have no idea how to help tmjers? That's what I have found through the years.

I'll be here to support you however I can across the atlantic ocean. We tmj sufferers are one big family. Let me know when your surgery is and I will definitely have you in my prayers.

God bless...
Carol

I just found a message you had left me a while ago.My names judy im 54 and from the uk. I am still waiting to have jaw surgery and have seen umpteen specialists. I am waiting now to see if my bite will meet if they bring my jaw forward (although noone thought of that before confuses me) and I have an appointment in the new year. I was told at my last appointment that I am now addicted to painkillers so I am trying to cut down a bit.What has happened to you? With your tmj. If I dont hear from you I hope you have a good xmas and a happy and healthy new year judy uk.

Hi judy,
your case seems so unusual for me that I am at a lost for suggestions to help you. I recently became anti-surgery for tmj because of all the nightmares I read about when I was researching surgery for me. But then there are some tmj patients who have problems with the condyles and I don't see any other way to help them. So, I really feel for you and wish I could help more than just say, "i'm here for you."

i am curious, though, how your condyles got so bad. Do the doctors know? I think that if someone has tmj for several years, arthritis can set in. Is this what happened? I was told about 15 years ago after I had a topography (?Tomography?) x-ray that my condyles were flattened, but I do not know if this really affects my tmj. No one has ever said.


Stacy from tmj friends has apparently decided to have joint replacement surgery in early january, so she might be someone who can help you. Also, there is a man who doesn't have a condyle left because of a tumor and he's going to have a joint replacement surgery. His name is "just joe" and here is his original posting -

p221.Ezboard.Com/ftmjtalkfrm7.Showmessage? Topicid=1242.Topic

have you been able to find others having the surgery you are contemplating?


What do you do for yourself now to cope with the pain? Tmj is so strange - sometimes I am okay and can handle whatever pain there is. Other times, the pain is so bad that I feel like I am going crazy. I love the hours/days when I am pain free. I used to have more than I do now.


You mentioned something in your posting about being addicted to pain medication. What pain med are you supposedly addicted to? I add the word "supposedly" because when a person has chronic pain, it is rare to become addicted. Dependent, yes, but not addicted. What makes you think you are addicted?

I have a script for vicoprofen which is about the only drug that has helped me more than just occasionally. Sometimes I feel that I might become addicted to it, but when i'm not in pain, I don't take it. That proves that I am not addicted to it. If I was taking it even when not in pain, then yes, i'm in trouble. Also, I do take more than one because one doesn't work. Some people might say that I am addicted because I have to take two pills instead of one. But again, that is not the definition of addiction. I am unfortunately overweight by a lot and my body needs a higher level of drugs in it than if I was an hundred pounds lighter, but i'm not. But again, I have control over the drug and take it only when I am in pain. I even have a game in my head that I play with myself to see how long I can go when in pain before I take the med. I've gone a whole day in pain and not taken the drug. I also do not take vicoprofen at night because it keeps me awake (i'm opposite than the average person). What is your pain level?

Anyway, you might want to rethink your thinking about addiction versus dependency. There is a different. One is bad for you and the other is just a harmless side-effect for a chronic pain patient.


I was in england in 2002 and loved it!!! I went by myself, which was actually a big deal for me. I almost have a phobia because I don't like to leave my house most times. I do go to work most days, but I have to really talk myself into going anywhere else. It's silly, I know. But, I flew over there. The whole beginning part here in detroit airport was awful. Once I got to my rental room in london, I crashed. I stayed in london for 3 days and must admit to not liking it, but it was because I was alone. I was very proud of myself for going sightseeing all day except that first one when I got jet-lag I guess. I then took a train and met my internet penpal out in poole. John and I had only met over the internet, but after the initial first day feeling uncomfortable, we got along great. I stayed in his house in blandford forum, dorset with him and his girlfriend. The 3 of us went on day trips most days and had a wonderful time. Sandie and I got along better than great and john was our videoman. It was so much fun. I loved the countryside, everywhere, it was just so beautiful. His sister and brother-in-law took me a couple of days and we also had wonderful times. I stayed two weeks and we all cried when I left. They treated me like royalty and it was a wonderful trip. I want to go back and live there. :)

well, enough of that. I hope you are having pain-free holiday so far. Relax and enjoy the time.


God bless...

Carol

Thanks for the post everyone. Carol you are right about the painkillers I need them to be out of pain.No one really knows what happened to my discs,one dr said that I may have had a small lower jaw and over the years it had distroyed my discs ad the top of my jaw. I get stressed very easily and it could be that as well. When I was young I used to suck 2 fingers that resulted in me having a brace and a lot of dental work. I also had a violent husband so take your pick.I am taking sr tramadol 150mgs and ibprofen but it is not controling the pain very well now. Im 54 from the uk. I would love to hear from you and hear your story of tmj, im afraid we have that in common. Take care judy.

I forgot to say that I couldnt get the message up from ezboard that you sent and I would love to read it. Judy

Hi judy,
i don't know why you couldn't get to "just joe," but to get there, to to tmj talk (which I guess is ezboard), go to page 2 and near the bottom is his posting of "pending surgery." I also noticed today on tmj talk a new person from england called "jennet123" if you want to check him/her out.

I'll tell you more my story when I can stay awake. I'm pretty tired so i'm going to go to bed. I hope you had a bless christmas.

Thanks for the replys, I have seen justjoes posts and hope it all goes well for him. You mentioned jennet 123, we have met up in birmingham when I had an appointment there she is lovely and having her op in january.The drs dont really know why my discs have gone it could be stress or hormonal I havent got a clue but they dont think its athritis.Hope you had a good sleep after, take care judy.