This is an interview conducted on the phone by Stacy, the Founder of TMJ Hope, with Lorelei, a TMJ Hope community member that has had several TMJ surgeries. It’s an amazing read, and has some incredible tips and insights that could really help you if you’re facing any sort of treatments (surgical or not).
Stacy: So tell me a little bit about yourself?
Lorelei: I’m 45 years old. I’m married very happily to a very supportive husband. I have 3 daughters that are 20, 22 and 25. And I’m sorry, yeah 20, 22 and 25. Isn’t it terrible?
Stacy: No, I sometimes forget how old I am so it’s okay. Hahaha.
Lorelei: Hahaha. I have a 2-year old grandson who lives in Louisiana, and I work for Medicare. I’m a quality operations lead. I’ve got 26 people on my team right now. Its kind of a demanding job but it’s a job that I like most of the time. And I’m pretty old fashioned, our house has all these antiques and I craft and crochet and knitted and all those homebody things.
Stacy: Cool! Well, tell me about your first experience of TMJ disorder. How did it start?
Lorelei: Well I had popping in the joints for a couple of years.You know, they would get stuck and I would pop them. There was no pain, whatsoever, silent beginning all of that I thought it was like popping your knuckles. I didn’t think anything about it because it didn’t hurt. So without that pain as a warning signal….. I didn’t think anything was wrong. I have never even heard of TMJ and didn’t know what it was. Then in July 2010, I developed a pretty severe pain right in front of my left ear and I thought it was an ear infection, so I went to the doctor and he looked it and its not an ear infection. He said, “I think this is TMJ disorder.”. And when he told me what he thought was wrong, he actually had to look it up–yeah, he did not know. He said, “I think it might be something with your TMJ but um…. I don’t know too much about that.” but then he’s a primary care physician which is your first stop. So he gave me some motrin… and he sent me to see an ear nose and throat specialist. That family care physician is actually a different doctor that I am seeing now.
Stacy: Sure, sure.
Lorelei: Well, he did not know, so he sent me to an ENT that’s the closest thing he could come up with.
Stacy: Okay well, just to add this, that’s actually more than most patients get. Most patients they go to the doctor and they are diagnosed for something other than TMJ disorder at first because their doctors have no idea to even look it up. So I think what you explained is maybe not the best situation, but its certainly better than having to go to five doctors before you even get a name for what you are going through. You know, what I mean?
Lorelei: Yes. I went to the ENT and he examined me and cured the light side of me because he he didn’t know anything either, he just did an examination and he said, “I think you going to have to have your jaw replaced!”.
Lorelei: I left his office in tears.
Stacy: Did you know how he even came to that sort of conclusion?
Lorelei: I have no idea. But he absolutely told me that he thought that I was gonna have to have my jaw replaced and I needed to see a oral surgeon and I left his office just in absolute tears. In three days, I went from thinking I have an ear infection, to, ok there’s something wrong with my jaws. But what are you talking about I’m going to have to have my whole joint and have my whole jaw replaced?
Stacy: Yeah, you didn’t even know that kind of thing existed? Right?
Lorelei: NO! I didn’t know anything about TMJ and I just cried. I called my husband in a panic. And so I went to find an oral surgeon, of course there was the problem of finding the one that takes insurance.
Lorelei: And treat TMJ. I spent an entire afternoon on the phone so frustrated with my insurance company. I was online looking. I was calling and calling and calling. You know, I would find doctors that take my insurance, but they didn’t do TMJ and/or doctors that did TMJ but didn’t take my insurance. So finally,I found one, he was my first doctor that I went to. And he did the exam and sent me to the MRI and showed all of the information of the joint that’s displaced
Stacy: Wait let’s stop there. So when you had the MRI, lets talk about that for a second. When you had the MRI how much information did you know at that point about what you could possibly be going through? Were you still pretty in the dark about what was going on or how much research had you done?
Lorelei: Gee, I thought… my doctor had done some research and he explained to me that we needed to find out how bad it was before we knew anything for sure. And the first thing he told me was that I was not in a position to have my jaws replaced at this point..
Stacy: So you at least knew that that wasn’t going to happen.
Lorelei: And I felt a little better after that. And he said, “You know that could be a possibility, but we’re going to try not to have that happen.”. So I felt a little better. I did noticed that when I went to the MRI, they didn’t know anything about TMJ because they handed me this round tube and at that point, I could barely get my mouth opened, wanted me to put it between my teeth and I said I can’t do that and she said well you have to.
Lorelei: So I actually got a little frustrated. And said, “Well you have to do this or we can’t do the MRI!” I said, we’re gonna have to figure out something because I can’t get my mouth open.I can’t open my mouth around that. So she’s found a wedge of some sort……
that I was able to hold. You know as much between my teeth as I could, even that was agonizing.
Stacy: As a sidepoint…. some of them do popsicle sticks taped together which might be a better alternative than the the big huge syringe.
Lorelei: So they did find a wedge and I was able to open a little bit and even that was agonizing it took forever and I had to hold very still
Lorelei: By the time I was done, the technician was absolutely impatient with me, I was just frustrated with her because I could not get my mouth open and she had absolutely no compassion for that whatsoever.
Lorelei: And by the time it was done and they were able to take that wedge out, I was just crying and just tears pouring. I couldn’t understand what they’re saying.
Lorelei: And I did tell the doctor when I got back in the office, somebody needs to educate them.
Lorelei: You know about what this is like. So I went back he did say that the joint was displaced–there was you excursion. There’s just so much swelling, so much fluid. You could not see the swelling from the outside. But it was definitely there on the inside.
Lorelei: And so he did….. well, the first thing he did….. was schedule an arthrocentesis which actually was 1 year ago today.
Stacy: Okay, So when that happened, how much information did you know about the arthrocentesis at that point? Did you go research that?
Lorelei: Ahhh, by that time I had found TMJ Hope and I had looked up information about that, so I did understand. I knew what I needed to prepare for it, in other words, I was mentally prepared. I knew what the procedure was about, that is was about going in there and they were gonna put few steroids in there…. and probably while there… try to flush out the joint where the lubricant is to try to get the disc to maneuver back in place. And they took a lot of fluid out while they were in there as well.
Stacy: So, how did you feel emotionally going into that?
Lorelei: I think I was incredibly hopeful and I was nervous, but knowing what they were gonna do made me feel better. The more information that I have going into something, the more comfortable I am with it.
Stacy: And I think that’s something, all that information and a plan. I know that I start to get really anxious about something or I start to not really know what I’m going to do. If I sit down and think about what do I know and how can I plan for the next step. Because if I can get one foot forward, then I’m one step farther than I was yesterday, so I agree.
Lorelei: So going in, I was very, very hopeful. I think I wanted so much to believe that this was just going to fix it. That I had convinced myself this is it. That’s all they have to do then I’m going to be fine.
Lorelei: I didn’t realize at that point that TMJD is really chronic kind of thing. You can do things to make it better but it’s never really going to be cured, in other words.
Stacy: So you went into the arthrocentesis thinking that this is going to be the cure?
Stacy: Ok, let’s talk about this first, how did you feel afterwards?
Lorelei: Oh, well right afterwards there was quite a bit of pain. I think I was a little surprised at how much it hurt.
Stacy: How long were you out of work for?
Lorelei: It was a week. Well, 5 working days.
And then, it started feeling quite a bit better, and now I know that was the steroid shots, and that was just maybe a week or two. I started feeling better and then it started feeling worse again.
Lorelei: And I was so upset. And thinking, “Oh no, it didn’t work.” I really thought it worked and I was so disappointed. You know, just that it was a roller coaster.
Stacy: Sure. Sure.
Lorelei: It really was. It was a roller coaster from the very beginning, and it still is just to a certain degree. It started getting worse and I went back to the same doctor. At that point, he said there’s really nothing more I could do. That’s all I do. He doesn’t do anything else as far as treatment and surgery. He said you know that’s the only thing I can do you need to see somebody else.
Stacy: You know that exact same thing happened to me. Did he believe you that you didn’t feel better, it didn’t help or was he like, “I don’t know why this didn’t help you. You’ve gotta go somewhere else”.
Lorelei: Pretty much he said. I don’t have any more magic. I can’t imagine why this didn’t help. And I lost faith. At first I think I wanted very much to believe in him cause he’s had a good manner and all that. So I guess, I wanted to believe I could trust that he knows what he’s doing. By the time I left there, I was thinking he should have just referred me in the first place.
Stacy: The exact same thing happened to me. The first surgeon I went to said that he did treat TMJ disorder but when I had arthrocentisis and it didn’t help at all, he blamed me and said that it must have been something that I did and he said to me, and I will remember this for the rest of my life, “I don’t treat pain. I’m a surgeon – I do surgery.” I guess they tell you that, when someone tells you something you should believe them. That was the first time I realized that surgeons do surgery and dentists do dentistry and if I continued going to a surgeon I was going to continue having surgery and that the pain is not their strong point. So…
Lorelei: Right. Well my goal at that point was not to just find any other oral surgeon. I wanted someone who had a background in TMJ.
I needed someone and there is no such thing as a TMJ-ologyst.
Stacy: Right, unfortunately.
Lorelei: But I needed to find someone who specializes and do as much as he can to specialize in it. That’s when I really started to do some research and moving around finding what kind of questions to ask. And that’s where TMJ Hope came in as well because I learned a lot from the other people and from the information on the website about what are you looking for, what kind of questions do I need to ask. And that it’s okay to ask those questions. You’re almost interviewing, you know it’s not somebody else’s job, when you decide what doctor to go to. So I found this doctor, he’s at a teaching hospital. And that’s one of the tips that I got out of TMJ hope, to look for the teaching hospitals.
Lorelei: Very often that’s where the research happens.
Lorelei: And that’s why I did and I found this doctor and he has done more research on TMJ than anyone else I could find and, as a matter of fact, he’s one of the very few doctors even in the state of Virginia that has done TMJ research. He doesn’t just do surgery, he actually treats the disorder.
Lorelei: And he’s thrusting off a treatment plan, he doesn’t jump straight into surgery. He did tell me, when I went up there he did my evaluation, ah let’s see, I had the arthrocentisis on September 13, I did not get to see this doctor until the first week of December because he was so booked up. He is one of the only doctors that specializes in it or sort of specializes in it. And that is all he does, by the way. All he does is treat TMJ patients. He doesn’t do any other kind of oral surgery or anything like that.
Lorelei: So it took me a long time to get an appointment. And, in the mean time, it was a struggle to get any kind of pain relief because when you’re in that kind of pain……. The pain was at that point where it’s absolutely developing, it was excruciating. And I was beginning to lose weight because I couldn’t eat. And I was trying to make the first oral surgeon understand I have to wait 2-3 months to see the doctor. I cannot go without pain medicine. I’m not a junkie, I’m somebody who’s in pain.
Lorelei: And I’m not selling it on the streets, I’m in pain. I can’t function at work or at home. So that was a struggle. When I finally got to see the oral surgeon at the teaching hospital, it was December. It had been 3 months or 2 and a half months since the first arthrocentisis, and he did thorough evaluation. He reviewed the MRI results. He came in he did the examination, he asked a lot of questions and he came back and said, “Okay, you have a mechanical problem with your jaw.” And I was so grateful just to hear someone say this is the problem.
Lorelei: And he explained how the disc works, how the joints work. He said that you know that the disc isn’t going to go back in there by itself. This is a real problem, you have a lot of scar tissue in there. We need to get that cleaned out. We need to get some of the fluid out of your jaw. So then we started talking about the arthroscopy.
Lorelei: So, we scheduled that and then there was a fight with the insurance company.
Stacy: Oh yes.
Lorelei: Because the insurance company wanted me to jump through all of these hoops and a lot of them were hoops I could not physically jump through, like wearing night guards.
Stacy: That’s interesting.
Lorelei: I could barely open my mouth and I mean barely. I was eating from a baby spoon, I was eating oatmeal and little baby foods.
Stacy: I understand, I’ve been there.
Lorelei: There was no way I could do some of the things. I’ve been through some difficult therapy and all of this. So even though we sent all of that information to the insurance company, they still denied it. And what the insurance coordinator at his office told me, for my particular insurance company at least, is that they always deny it at the first time, always.
Stacy: Yup. If I have one piece of advice for most people that go into surgery is that, you have to be set on having a fight and you have to be consistent because the thing is, they bank on you quitting. They bank on you saying Oh well you denied it that’s fine I’m gonna do something else.
Lorelei: Well working in the insurance industry, I know better. So of course, it has to be pre-authorized. So I did fight, and I was fortunate that the insurance coordinator and the doctor were very accustomed to these fights.
So we sent in every information, we appealed it and eventually because I requested and asked someone, I think is was on one of the discussion boards, had said something about a peer-to-peer conversation with your doctor and the insurance company.
Lorelei: And that’s what I said. I said he needs to do a peer-to-peer and he said you’re right and he scheduled a peer-to-peer. The surgery was supposed to be December 21st and we had been fighting this for several weeks and finally he did the peer-to-peer. I believe it was on December 18th, he finally called me and said it went through. We’ve got your pre-authorization. We finally did the peer-to-peer. Because they even gave him a run around the bed. I even talked to a claims adjuster and I said I don’t want to speak to a claims adjuster.
Stacy: No, yeah that’s a waste of time.
Lorelei: I want speak to the doctor.
Lorelei: You know so he even fought the fight with me. And then, I’m not the only patient they have, obviously, so that also meant me taking charge and consistently calling and e-mailing, as I could look up that doctor’s office emails. Very often their email addresses private…… Insurance coordinators and the doctors and the receptionist and and a lot of the communication that I’ve had–that I’ve done has been through email.
Lorelei: And you know, you’re not always going get somebody on the phone, but they check their email all day long. And that it was a constant… it was everyday. It was almost everyday. I was the squeaky wheels you know and consistently making sure that the people in the doctors office knew how much I appreciate it.
Lorelei: You know, that they’re helping me. I’m really building them up and developing… A personal relationship, so that not just with the doctor, with the receptionist that makes the appointment, with the nurses, with the insurance coordinator. So definitely have a personal relationship with all of them.
Lorelei: So you become a priority for them.
Stacy: That’s actually, really the point and something I don’t know if I’ve ever really talked about on TMJ Hope but it’s funny that you mention that because it’s something that I do and I do it naturally and I never thought about that being a tip. This sounds kind of crazy but I bought my surgeon’s lunch many times, I mean, you want them to like dealing with you. They have the potential to change your life. And you want to treat them like they could do that. I mean, hopefully, you can find someone that you can work with and that it’s a pleasure to interact with. And if you don’t have somebody like that find somebody else, really.
Lorelei: So finally, I was able to have the arthroscopy and again because you know it’s human nature to get your hopes up.
Lorelei: To hope that this is the answer. I was so excited. I mean, one thing to get excited I wasn’t excited to have surgery but I was excited thinking that this was going to fix it. I was not going to be in pain anymore. I was not going to have to see part of my life anymore. At this time I was heavily into the TMJ Hope website and had really done a tremendous amount of research, my husband, not me. Hehehe. He’s very appreciative of your site as well, but being very heavily into the website and I really felt like I was prepared, I could advocate for myself. I knew precisely what they were going to do. When they went in–I had a good feeling about it. I knew what was going to happen. There was nothing unexpected. I felt comfortable going into the surgery. And again, it’s pretty much the same thing. Here comes the pain afterwards and you know, I didn’t realize it was going be that painful. But then again I have a very low pain tolerance so that’s a very personal Issue. It may not be that painful to a lot of people but by that time, my doctor also realize that.
Lorelei: He used to tease me and tell me that I was a delicate flower. Hahaha.
Lorelei: You know something that might be a pain level of a 5 on some people might be an 8 or a 9 for me. That’s just how I am.
Stacy: Do you have red hair by any chance?
Lorelei: No, I have dark hair.
Stacy: Because red hair, it’s proven that people with red hair have and I can’t remember if it’s lower or higher but one of the two pain tolerances. So I was just wondering.
Lorelei: I have some red hair in my family, but I don’t have red hair. So, he had me prepared with motrin and pain medicine and he educated me with something I already actually kinda knew, it’s easier to prevent the pain than to control it right there. So.. I was resistant to taking the pain medicine for the longest time, my husband would say, did you take your medicine? Then, you know, and he’d give me that glare. That admonishing look, go check your medicines. So the same thing happened though. I thought, okay this is great I could open my mouth, because again, more steroids.
Lorelei: So again, a couple of weeks of “Oh well this is great” and then downhill. And here comes the disappointment again. Here comes the pain again. Here comes the tears because the depression started setting in. You know this is not going away. This is not working. This is never gonna get better. The pain became so bad after that. And then I even tried again, about a month later he tried another arthrocentisis just to lubricate the joint thinking, okay maybe we need a little something else to do this. So that was surgery number 3. It was the arthocentisis again. And then, that didn’t really do much good at all. That was just like throwing water in…
Lorelei: Didn’t do much at all. And then it got to the point where it had gotten so bad that there were days that I was talking too much and I couldn’t open my mouth because it was too painful. And just absolutely excruciating all the time you know. It was really affecting my job. It was absolutely awful and that was the worse it had been. It had just gotten worse and worse. And in, was it May that I had the–just thinking out loud–okay in May–yeah day after Mother’s day– I had the disc removed. I went in and had the open jaw surgery.
Stacy: So, let’s talk about going in to the disc removal. How were you feeling because at this point you’ve now had the arthrocentesis, the arthroscopy and another arthrocentesis, and none of them worked? So how are you feeling going into this to surgery yet again. Are you feeling like this is going be the thing that changes your life or are you feeling maybe a little less pumped up about it?
Lorelei: I was a little less pumped up about it. I was hopeful that it was going to help and he assured me the disc is the problem. If we take the disc out, it will reduce the pain. At this point I was much more realistic, however. I knew that TMJ was a life-long condition that I was going to have to deal with. That this may help, it may not. I was more realistic. I wouldn’t say jaded but more realistic. I had a lot of faith in my doctor and he was wonderful about partnering with me and educating me because he knew that was important to me. he knew it was important for me to understand and to get as much knowledge as I could. And he absolutely listens to me and just every word that I had to say seriously. I know how lucky I am to have found this doctor. So he did the surgery and then that’s when he came back and said that the disk was worn-out. He said that it was so much worse than he expected. He said no wonder I was in so much pain. And so you know, he did take the disc out. He did not put any kind of a graph in there. And explained that eventually–I was under the impression for some reason that scar tissue was devastated because that’s not the case, the bones will wear down I guess. And the hope is that eventually they’ll just smooth out you know and he said that doesn’t always happen and I don’t think it’s happening for me because now it’s September and…
Stacy: So let’s back up a little bit and let’s talk about the actual surgery itself. This surgery is remarkably different from your other surgeries because–just knowing since I’ve been through it myself–this is what I would call the first really kind of big surgery. The arthocentisis is an out-patient procedure that they do on a couple of minutes. You’re under twilight sedation. It’s something that, not in the scheme of TMJ surgeries, is the biggest deal. We move on to the arthroscopy you’re getting a little more invasive. you’re talking about going to the hospital. You’re talking about going in a general anaesthesia. You know the recovery time is longer. But this surgery, it’s not significant but I would say the scar is much bigger than the arthroscopy. The recovery is much longer. Did you stay in the hospital?
Lorelei: No, I did not. I was there for the day but then I got to come home. I was up there at 6 o’clock in the morning then I got several meds.
Stacy: Okay–and how did you feel when you woke up?
Lorelei: When I woke up–I was in quite a bit of pain.
Stacy: Was is different than the other times?
Lorelei: Different than the other times? This was a much more intense pain. So much more intense. I remember waking up from the anaesthesia in the recovery room and I immediately started crying because the pain was so bad.
Lorelei: And they gave me a shot of something in the IV to relieve pain
Stacy: Right. Did you feel prepared? Did you know that going into it that this was going be more significant?
Lorelei: Ah I don’t think it was to that level of pain.
Lorelei: I did not know it was like that.
Stacy: This is not a dig at you–I just want to say this because I think it’s important to point out that I did tell you that it was going to be a bigger surgery. And I think it”s important to point this out because you said that you knew it was a bigger surgery but you weren’t prepared for the level of pain that actually happens. So, I want to point that out because that’s how I felt too. And somebody should have told me. They said you know this is a bigger surgery than you’re used to. This is going to be significantly more painful and I thought, whatever, I don’t know what I thought. How can you know?
Lorelei: I thought that the pain was going be under control, at least when I was at the hospital. And maybe they did not understand that I don’t have a high pain tolerance. I actually have a very low pain tolerance and maybe that’s the reason why the pain wasn’t controlled enough for me to wake up without being in that much pain.
Stacy: Well I think–and this is just from my experience having it and talking to people–I think there’s not really much they can do and I hate to say this because I don’t want people to feel like there’s no hope. There definitely is. It gets tons better, but there’s not much they can do right when you wake up. You’re going to be pretty floored at how much pain you’re in. I mean it’s just–that’s the way it is and…
Lorelei: I didn’t expect that it’s going to be how bad it is–because it’s just a small joint. You wouldn’t think it would hurt as much as maybe having –an abdominal operation or something of that nature but it is incredibly invasive. They made an incision from right outside my ear–from the top of my ear to the bottom of it and absolutely laid my jaw open. And went in there and took a piece of my jaw out.
Lorelei: And when you say it that way you realize, well of course it was painful!
Lorelei: And so I was in a great deal of pain. Immediately they gave me something in my IV that helps the pain. And then when I came home, when I woke up, I was just in terrible pain. I think that was a great bandage. I placed the palm of my hand on the side of my face right in front of my ear. I could not feel my ear because of the nerve that they had numbed. they did explain to me you know they are going to have to cut a nerve. And I could not feel my ear. I could not feel my left eye brow. My left eye was a little more open than my right. How did I realized that? Well, I looked in the mirror because of the nerve, I think. And I came home and they have given me motrin–800 milligram motrin and percocet. And even taking, knowing what I know, that medicine to try to prevent the pain from getting worse. My husband put me to bed and he stayed sitting in the rocking chair beside the bed, just stayed there. And I was in so much pain I was sitting up and holding my face ang rocking, because I couldn’t hold still, it was so painful. And I was not prepared for that at all.
Stacy: There’s no way. I guess, the point that I was trying to make before is that there’s really no way to be prepared. I mean I could have told you all day long and someone told me beforehand that this was was going to be a difficult surgery, but that first open joint surgery is–and again I don’t want to scare people, but I think it’s important that they know the truth–and the truth is that first open joint surgery is very difficult.
Lorelei: It really was. It was very difficult. And we’re on the phone with the doctor and he eventually had me taking percocet every 3 hours. And which is a lot of medicine. This is just for a day or so or until it’s subsided, but yeah that was incredibly painful. I was not prepared for that. And you’re right you could have told me all day and I would not have been prepared for that. I have had lots of surgeries. I’ve had babies with no anaesthesia and I would rather have that than this.
Lorelei: It was easier to handle having labor with no anaesthesia than it was to go through that first day or so. And that being said, once it did subsided and it started getting better, I got back so much of my jaw opening. It was just incredible–the amount of opening that I got back. And the level of pain went from you know excruciating 10+ on a daily basis to a 5 or a 6 in a daily basis.
Lorelei: Then a 3 or 4 and as time went on I got like…
Stacy: When you go from 2-5 that’s incredible, that’s going from screaming and crying and feeling like your life is just nowhere and you’re in the tubes to going through your day like you can be a normal person you know. That’s a huge difference.
Lorelei: Yeah. That’s what it did. You know, it may not have cured this, which by that time I knew that there wasn’t a cure for it. But going from 10+ crying, rocking, not having a life you know that kind of thing, barely making it through my days at work. Going from that to, being in the level of 5 when it comes to pain. Cutting that pain in half is just unbelievable because it gave me my life back. I’m not thinking about the pain anymore so.
Stacy: How long were you out of work for the arthroplasty?
Lorelei: 2 weeks.
Stacy: And did you feel like that was enough or not enough or how did you feel about that?
Lorelei: I had a hard time the first week that I went back. I probably should have stayed out another week. Because I’m doing a lot of talking at work. I do a lot of presentations, talking, leading–that kind of things because of the nature of my work. My mouth was moving.
Lorelei: and so it was very difficult at the first week when I came back. I probably should have taken another week before going back. But, I was able to come home early a few days that week, I have a very understanding boss. So I was able to work half days a couple of times that kind of thing, so I was able to ease back into it.
Lorelei: I would say that if you can’t do that, if you don’t have a boss that understands. I would suggest 3 weeks.
Stacy: If not more really,and depending on the kind of surgery you have. I think that if you can ease back in, that’s really the best thing to do. Like start at half days, start at whatever you feel comfortable doing and it’s like once you start going back to work or you start going back to your normal life, you start feeling a little bit better, but then you overdo it. And you have this crash period where you overdo it and you’re not ready to start doing that stuff any more and your body says, No! And you go back downhill and then you’ve got to take it back up. And you’ve got to go easy on yourself and it doesn’t do you any favors to push, push, push.
Lorelei: No it doesn’t and my husband would keep telling me to stop what I’m doing because I have a tendency to, as soon as I start feeling better, I will dive in head first. And I just wanted so badly to be back in that normal self that I will overdo it and I will indulge in it, and rebound pain or that kind of thing where I’m exhausted, and I’m in shape. I have just done too much. And not only that but when you jump back into things especially at work, as soon as you show up…
Stacy: People expect you to be better.
Lorelei: Yes, they expect you to be better.
Stacy: Because here’s the thing and in this I try to be really serious, I say this a lot and I don’t know if I say this enough, people think that in any kind of surgery and especially with TMJ, it’s like knee arthroscopy or something. So once you have it and once you show up at work it’s cured. It’s not even a problem anymore.
Stacy: And so once you know that people think that way, you’ve got to be that way, It’s like once you show up there’s no going back.
Lorelei: Right. Because you can always see it, I mean the scar is right next to my ear and therefore while I was at home discoloration and swelling were absolutely horrible. I looked like I had a tennis ball under my jaw.
Stacy: Yeah yeah.
Lorelei: That did go down the first week, but the discoloration stayed around for a couple of weeks and it was just blue-green purple from in front of my ear all the way down behind my ear and down my neck. So when people can see that they feel she’s had surgery. By the time I went back to work, a lot of that was gone and some of that was covered with some make-up.The fact that people can’t see a tremendous scar or they can’t see the swelling on the outside, there’s no visible signs. Most of the time there’s no visible signs that you’ve got anything wrong with your jaw. And so they make ugly assumptions and there were some not so nice people, who shall remain nameless, who made some ugly assumptions and hurt my feelings. And I’m pretty tough when it comes to things like that. People can say whatever and it kind of rolls off with me but that really hurt because you’ve been through this kind of pain for this long and you suffered. And because you try to go into work, you try to smile, laugh and go on with your day and hide the fact that you’re in pain, they assume that well there might not be anything wrong with her. She’s smiling and laughing.
Lorelei: Well, you know that really hurts. It’s like well I didn’t have surgery because I don’t go and show people my scar.
Stacy: I think we always start from kind of behind. People who don’t have illnesses they wake up and go into their day like nothing is wrong. I mean everybody has their issues but they don’t have to think constantly about their jaw and so for you and I and other people with issues like us, we start from behind. And just being normal is difficult.
Stacy: So, it’s even more painful when people say things like that because you’re trying so hard. And how can they not understand or see that you’re trying so hard and your intentions are so good. How could someone not understand that?
Lorelei: That’s very very hurtful when you’ve done everything you could do to try to be strong and not show that you’re in pain all the time and because you’ve done that people think, “Well there’s nothing wrong with her.”. Like I said, you wouldn’t like to walk around and go, ”Would you like to see the big scar that goes down in front of my ear?”. Somebody mentioned that to me, somebody has done something ugly like that. I happen to have to some of my medical records with me because I needed to turn them in from a leave at work and I remember getting them out of my bag and saying, “What I feel like doing is and putting this in your face.” But it is very hurtful and that’s one of the things that’s very hard and you’re just trying to help people in your life, they don’t understand TMJ. The people you may encounter at work or you know in places like that, they don’t understand it because you can’t see it you know. I’m not walking around with a big swollen face or…
Stacy: A big hairy mole on your forehead that’s bleeding. Hahaha.
Lorelei: …bleeding, that kind of thing that couldn’t possibly anything that could be that wrong because they can’t see it.
Lorelei: And you know that is very difficult. But it was, once the initial pain from the surgery wore off and it became more manageable, you know little by little, and then it was just amazing you know. To me the amount you know opening and anybody who has TMJ would probably understand when I say, I could get almost 4 fingers, now!.
Stacy: Wow! That’s amazing!
Lorelei: That is amazing and the pain was under control. And you know, I was still taking pain medicine but it was under control. And I was getting back to my life. And I have my life back. Here I am 4 months post surgery and I have my life back, however, I have noticed that in the last, oh, in about the last month or so, I have lost some of my opening. There’s been some popping or something when I’m yawning we all know that, but if I try to suddenly yawn or something like that there’s a popping sound and my husband hears it across the room.
Stacy: Oh wow!
Lorelei: And there’s grinding. Of course you can hear the grinding–in you ear. And there is pain, there is pain all day. There’s pain all day that’s not horrible but then there’s pain that if I eat there’s pain. I was eating pizza last night, it didn’t have anything crunchy on it, but just eating a pizza was painful. Of course, I can’t and I don’t eat peanuts and things like that. There’s no crunching on pork rinds. But generally I was able to eat almost anything I wanted to a certain degree and now I’m much more conscious. I was just telling my husband recently, I’m doing that thing again where subconsciously I just don’t try to eat everything.
Stacy: That’s interesting that you mentioned that–
Lorelei: Well a lot of people want to eat everything after surgery.
Stacy: –because I’ve mentioned that to people where, and you might be the same, all of a sudden I realized, just out of nowhere that for the past, I don’t know, 2 weeks, 3 weeks whatever, I hadn’t eaten one thing that was chewable. I hadn’t really eaten stuff that pushed me and I go through phases like that where I just realize because it’s such a part of my life now that I don’t even really think about it. So I just realize all of a sudden, Oh I’ve been eating completely soft foods for the past 2 weeks. I must be in more pain than usual and it’s kind of weird.
Lorelei: Exactly. Your making those choices because you know if you eat that, it’s gonna hurt more. And you know there are times when it’s not triggered by foods, it just hurts. I’ll get a pop like that when I yawn or just moving my mouth the wrong way. And from that point on I know the pain is coming. And I’ve kind of taken a downward turn at this point so I’m going back to the another doctor and then we can see what the plan is. At this point I’m more realistic. I understand that it’s about a plan to manage it and it’s about self care. It’s about managing the pain so that I can keep my life because I’ve gotten my life back and I want to keep it. So I’m determined to work with the doctor and my family healthcare physician. He does my pain management. And I get to the point that I’m managing it, I’m not unrealistic anymore. I know it’s not going to go away. It felt very grateful that it’s so much better than it was. It’s amazing how much better it is. Not to say that that’s for everybody but in my case, the disc had to come out. And my goal now is to manage it without ever having to have surgery again.
Stacy: Okay let’s stop there. Hehehe. So why do you say that? I mean other than just the obvious surgery is not fun and no one wants to do it. Why are you so adamant that surgery–you don’t want to ever do that again?
Lorelei: Because from what my doctor that moved to Ohio told me, the only other surgery option at this point would be jaw replacement. If this doesn’t work the next thing would be jaw replacement. And that is “the major surgery” and knowing what it is having to go through having the disk out, I can’t begin to imagine what that would be like. And I know that that would be absolutely life-changing that I have to have my jaw replaced.
Stacy: Well I think that for a lot of people they feel like that is the almost untouchable surgery like no, never. And I feel that you feel that way. I wouldn’t want you to feel like, Oh what’s next?–Yeah I think that that’s good to know that you feel that you have a way to create a plan, to move forward that doesn’t include trying to fix things. That you know that you can manage it. And that’s really important.
Let’s talk about what you think about–the whole thing in general, when you look over your journey from start to finish at this point, What are the things that stick out? Do you feel or are you happy with the decisions you’ve made? How do you feel about them? Would you have done anything differently now that you know more?
Lorelei: What I would’ve done differently, the first thing that comes into my mind is I would’ve done my homework before I chose the first oral surgeon.
Lorelei: At that point I was not informed enough to understand how to look for someone that treats this.
Lorelei: And so, I did not do enough homework. I thought, somebody who says, yes we treat TMJ, I thought they did the whole job, beginning to end. I did not realize that there’s no such thing as specializing in it. I did not realize that they can say, yes we treat it but that doesn’t mean that they do everything that you might need to have done.
Stacy: And it doesn’t even mean they’re good at it. hahaha.
Lorelei: Right. So I would have done a a lot more homework and I would’ve started with the doctor at the teaching hospital–that had done a lot of research.
Lorelei: That only treats TMJ patients, that runs the entire gamut of treatment. I think I spent a lot of time, a lot of time, several months of excruciating pain that I wouldn’t have had to go through had I done that kind of homework and really gone to the person who could truly help me.
Stacy: Yeah. That makes sense So what would you tell someone who was at the beginning of your journey, what would you tell somebody who was just finding out that they had TMJ disorder and they wondered what they should do next?
Lorelei: Well, I don’t mean to sound like a shameless plug, but the very first resource I had was TMJ Hope because that’s where I learned that I needed to take control of my own situation. And that’s the advice I would give them, this is your condition. It belongs to you, it’s unique to you. And you are the only expert in your own condition, your TMJ disorder or dysfunction is–it’s only yours. It’s not like anyone elses. It might be similar but it’s not really like anyone elses. And it’s up to you to educate yourself. And just as where you go to find reliable education. Do not believe everything you see on the internet. This isn’t a reliable source. You need to go to the reliable resources. I would tell them that they’re absolutely not alone. And I would tell them to try to be realistic about it because the disappointment that I went through was absolutely devastating. To think, okay this will be fixed, Okay this time it will be fixed. And I went through that a couple of times to the point where I finally realize that there is no cure for this. This is something that is incurable, but there is absolutely hope, it can be managed if you have the right doctors, if you do your homework, if you give yourself care, if you make wise decisions and not to jump into any kind of treatment without educating yourself and asking a lot of questions about what your options are and what your progress is.
Stacy: Definitely. Definitely. That’s interesting about you know the disappointment and setting out your expectations in a way that aligns with the results. And it’s so difficult to–and I think a lot about that. I think about, how do I prepare patients for this? How do I give them the information so that they’ll feel like their expectations line up with what happens. And how do i give them the information they need to go into it feeling confident. And it’s very difficult because it’s really personal and it’s not something that I can tell anyone. You’ve got it–it really has to come from your own experience and it was kind of like what we’re saying earlier. I could have told you all day long that the arthroplasty was a very difficult surgery. Someone told me all day long that it was but neither of us really understood until we went through it ourselves. And I think while it’s good to be realistic, that hope that feeling going into it is also what drives us forward. And…
Lorelei: And there is hope. There’s absolutely hope. It’s hard to balance the hope with the realism–with the realization that this isn’t going to be cured.
Lorelei: It’s going to be managed. And if you think of it as a treatment plan rather than a cure–it helps–I think once I realized that that’s what really helped me to deal with it. I still have my moments.
Lorelei: Yesterday, when I was pain you know and realized that this isn’t going on for over a year and so many times I thought I was going to get better. It was so much that right after the arthroplasty–and then for it to start going downhill again–it’s certainly better than it was, so that I hang on to. And I had my moments I got a little choked up last night thinking this just never ends and how bad is this going to get. And I think there’s always the fear for it–when the pain returns.
Stacy: Yeah is that the other shoe dropping.
Lorelei: When you lose some of the opening, you realize you’re making those subconscious food decisions that are–you know you’re not eating while you are eating. There was a point after the arthroplasty when I could eat thin potato chips but I couldn’t eat Frito’s. You know the difference there. Now I don’t eat the potato chips anymore. I’ve lost some of the opening. You know the pain has increase some and that will absolutely bring on the depression if you allow it to. You really have to, at that moment I got choked up, I shook it off, I told my husband that I’m not going to do this. I said, I’m just going to be grateful that it’s so much better than it was. But I’m not in the situation that I was in, I’m still glad that I did what I did. And I’m just going to move forward with the treatment plan. And I really think that focusing on a treatment plan and a management plan rather than a cure is one of the ways that we can try to avoid the depression that you can fall into when your hopes are dashed, thinking that it’s going to go away.
Stacy: Well and I think as you go along and as you start learning about how all this works and what your expectations should be, you’ll also learn and I really, really think that you will because your journey has been very hard. I think that you’ve done very what’s happened. you’ve done extremely well. And I think that as you go forward and you start learning how to manage it and have that plan, the feeling of is the other shoe dropping starts to lessen. You start to go maybe a week and then you’ll think, “Oh you know what? I haven’t thought about what’s gonna happen next in weeks!”. And then a month will go by and it took me a really long time before I felt that. Because after having so many surgeries right on top of each other and I have the same experience, you start to kind of get into this I don’t know–I don’t want to say that it’s a habit, but it’s like almost like you start your mind gos right through that place like, how can I fix this? And so as you start to work the treatment plan, or whatever you want to say, you will learn that you can actually do something. And there are things you can do and you can take control. And that took me a really long time to be okay with. Because it’s acceptance really. At the end of the day, it takes everyone a different amount of time to actually sit and think, Okay this is something that I have to deal with for a long time I would say that loud but deep down inside it was a whole different story. I would think “Is there anything? What can I do?” and the answers are not out there to be had. They’re not in the internet. I’ve been to the internet, the end of the end back about TMJ and I can confidently tell you that it is not out there somewhere you just haven’t found it on google yet, like it’s not there. So save yourself the time and the energy and learn ho to manage it, I think that’s really the key. What is your hope for the future? We kind of talked about that, I guess– what is your hope for TMJ for the future? What do you hope for TMJ Hope for the future? What do you hope for the entire specialty?
Lorelei: As far as the specialty goes, my hope for TMJ is that it will become a specialty.
Stacy: Yeah. That would be the first step.
Lorelei: One of these days there will be, for lack of a better term–TMJ-ologists. I would like this condition to be seen as what it is. It is a chronic condition that is unique unto itself. It’s not like anything else. It’s not like having problem with your knee or your hip. It is a completely different condition by itself. And it is so complex. There’s so many different ways to have it–TMJ disorder or TMJ dysfunction. So I would like to see it become a specialty in and of itself. And I would like to see, as far as TMJ Hope goes, I would like to see this website become the resource that the doctor would refer the patients to the day they open the door. This is where you go to get your information. Because truly, I cannot say enough, that I would not have gotten as far as I have, I would not have been able to handle it, I would not have known how to take care of myself or what treatments to seek or anything I was going through if it have not been for TMJ Hope. I really believe that you and your website have been an integral part of my treatment plan and my ability to handle this.
Stacy: Wow. thank you.
Lorelei: I would really like to see this become the go-to site. This would be the website that the patients would be referred to the minute they are diagnosed with TMJ. That would become just the norm that this is your first resource.
Stacy: Sure. Well we hope so too. thank you so much for doing this. this has been incredibly helpful. I can’t imagine if I were to come across this 8 years ago when I was going through this stuff, I just can’t imagine how incredibly helpful everything that you said would be. And I couldn’t have scripted a better interview myself! Thank you. Thank you.
Lorelei: You’re very welcome. I’m glad to have been able to do this. This is for me a way to give something back and I truly hope that this interview is helpful to someone that any or at least something that I’ve said would be send some of the hope to somebody that is facing what I have faced.