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Old 09-26-2008, 01:34 AM   #1
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NicolaJMP HB User
Advice please - first appointment

Hi everyone

This is my first post, but I have been lurking for quite a while now just reading posts. Anyway, I have my first Ďproperí appointment regarding my problems with my TMJ coming up, and I am a bit nervous. I am not sure how to bring up what is wrong with me, and I am somewhat worried that my Dr a) wonít believe me or b) will believe me but not recommend anything other than exercises (which I have tried by myself and donít seem to do much for me).

I know from reading the boards that I should probably be referred to the Maxillofacial dept at the hospital and should get an MRI done?? I am just worried because I am not that confident in asking for what I want (for example, I was FINALLY diagnosed with PCOS after complaining about all of my symptoms for a long, long time, but I have come out of that with no real advice Ė other than lose weight, which I am already well aware that I need to do Ė and no help in the form of medication. I found the Ďspecialistí very dismissive and didnít feel like I could ask for help from him. Anyway, that is a whole other story, lol). I am taking my mum with me, so hopefully that will help, but I donít feel like she really understands what I am going through with this so may not push enough for me. I love my mum to bits, I am a real mummyís girl, but when I got bored at work and made a list of my symptoms I e-mailed it to her and she didnít even comment much on it. Just Ďtake it to the Drís with you and you wonít have to talk as muchí!!

Okay, so I got away from my main point there, lol, but basically I have an appointment with me (new) Dr soon and I am somewhat worried about the reception I am going to receive from him, and any help I may get. Does anybody feel like sharing what they did/said in their first appointment?

Thank you in advance for any help
Nicola

 
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Old 09-26-2008, 06:55 AM   #2
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Re: Advice please - first appointment

Being worried and nervous is not unusual especially when you are dealing with TMJ issues. The symptoms alone can be so numerous that it seems hard sometimes to describe to someone else. My suggestion is to realize this is your life, your health. No one is going to care about it as much as you do, so take control and stop worrying about what the doctor will say. One of the best things to do at first (which I think you did), is make a detailed list of the symtoms you are experiencing. Sometimes just writing them down makes you feel like you are on the right track. Revise the list if and when necessary. Next, get to the doctor and also read as many posts on this site as possible that relate to your problem. So many people on here have probably gone through the same as you. Bottom line is talk to the doc, tell him what is going on and get his reaction/comments. Don't be afraid to mention your idea about having an MRI. If you do not like his response or you feel he is being dismissive, then just move on and find someone else. No one who feels ill or is in pain should ever be made to feel as though what they are experiencing is not relevant. Keep posting here so you can be in touch and discuss progress. Best of luck.

 
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Old 09-26-2008, 07:01 AM   #3
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Re: Advice please - first appointment

One more thing in answer to your actual question. I went to about 8 different doctors and a few dentists before I finally got some help. I'll bet many people on here went through the same thing. Different specialists, different dentists, some thought I was nuts, some thought is was something that I knew it wasn't and some were just plain rude. Be prepared for all, but don't be disheartened, there are alot of good docs and dentists out there too. I finally found a doc who helped me. Unfortunately I am experiencing similar symptoms again 7 years later. While I am upset that I feel this way again, I know that i need to pursue some sort of treatment and will do so. Hang in there!

 
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Old 09-26-2008, 08:13 AM   #4
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Smile Re: Advice please - first appointment

Hey Nicola,

i was just posting a welcome message to another new member and would like to welcome you too We are all here for you...i am also a mummy's girl hehe

tommynj has awesome advice and i couldnt of said it any better! GOOD WORK tommy you champion! LOVE the advice!

Remember this though : NEVER let any doctor scare you ok EVER! This is why 1.) All they care is about how much money they can suck from you ( well not all of them but well i say 99%) . Although you may feel hey thats disheartening ... this factor will then make you feel confident .. don't be to rude though but be assertive.. this is your life..and remember your money ( they use it for a new car, you use it for relief.. don't let them USE YOU!) i used to be nice to dentists but my pain had driven me so crazy i am straight to the point which i guess intimidates them so they actually help you and that you aren't there for any monkey business.

Remember medical practitioners are known to be sweet talkers to suck your every penny , be cautious and research before making any brash decisions, i am telling you this because i don't want you making any wrong choices honey, like how i did But you'll do great!

Thinking of you, Best of luck and let us know how you go! * hugs!

 
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Old 09-26-2008, 08:51 AM   #5
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Re: Advice please - first appointment

Thanks for your replies tommyNJ & Temera2. I know that I am hoping a lot in that my first Dr I have gone to with regards of my TMJ problem will be the one that understands and treats it correctly, especially as with reading the boards it is obvious that people have problems with this. I am just worried as I live in a relatively small market town (in England) and I am pretty much assuming that a Dr who works here will not have much knowledge on TMJD. I know that I shouldnít assume that and should just take the appointment first but I canít help being slightly pessimistic about the whole thing.

I donít have much faith in Drís as I used to work in a GPís surgery!! Only as a receptionist/admin though (so please be nice to your receptionists lol). I have seen many cases where the Drís are just ignorant of their patients and it can be very hard to make them listen and not be dismissive in the 10 or so minutes you get for an appointment. Unfortunately (at least in England) the most important thing for a GP surgery is to get Ďpointsí for doing things a certain way - i.e. you get more Ďpointsí for your practice if you only allow patients to book appointments on the day rather than for next week, etc. Which seems quite backwards to me in that it is certainly not helping the patients more. It is all about seeing as many people as possible. Anyway, I donít care to get into a rant on the NHS at the moment, so I will stop, lol.

Going back to TMJ, I am extremely lucky that I decided to research it myself, as when I went to my previous Dr (the one that I also used to work for) with a terrible cold and my jaw was locking up and I didnít know why, etc, he didnít mention anything about TMJ to me, but just wrote it in my notes!! Luckily, my mum, who also worked there, was putting my notes onto the system and she noticed that he mentioned the TMJ and she let me know. Apparently he didnít think it was worth mentioning, hence my occasional lack of trust in Drís!! Although I know not all Drís are cut from the same cloth and that I should have an open mind towards my new one (havenít met him yet)

Just as a little side note, the relief that I felt when I did start researching TMJD was overwhelming. All my life I have suffered from headaches and it drove me insane!! Although I hate having TMJD (who doesnít?!) and my pains are so much more than just headaches now, it is such a relief to know what is causing all of this. With no thanks to my old Dr!!

Sorry to have rambled on a bit, I am going to stop now lol
NicolaJMPxx

p.s. High fives for mummy's girls!! I am totally and utterly in love with my mother, she is awesome. My best friend Yes I am a nerd lol

 
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Old 09-29-2008, 02:20 AM   #6
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Re: Advice please - first appointment

Hi Nicola,

I do hope your doctors appointment goes well and you get your referral. I, very much like you, have diagnosed myself after 16yrs of chronic head and face pain and having seen lots of different specialists etc.

I did a lot of research and have found a TMD specialist based in Wakefield. I contacted him direct and have arranged a private appointment with him. The reason I did this is that I really did not feel confident that my GP would have referred me to someone. I feel that they think I have had lots of tests already and should 'just learn to live with it'. So, anyway, I have this appt next week and this specialist does run his clinic as an NHS clinic, so, hopefully, if he feels he can treat me then I should be able to have the treatment via the NHS.
After all this time I currently feel like my life is on hold pending this appt. I have never fitted a diagnosis so perfectly and so am really hoping he will say it is TMJ. Sometimes half the battle is a doctor actually being able to tell you what is causing your pain instead of being told it is simply 'stress' or 'all in your head' - (which I guess is technically correct!).

Good luck and please let us know how you get on.

Melanie xxx

 
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Old 09-29-2008, 07:54 AM   #7
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Re: Advice please - first appointment

Hi Melanie that is great that you have been able to find a TMJ specialist near you Iím not too sure where Wakefield is compared to me (Lancashire, northwest England) but itís good to know that there is a specialist there if I ever need one! Hopefully you will be able to do it on the NHS as well, it would be brilliant if you could. I havenít done much research on specialists yet as maybe I wonít need one, but whenever I search I always seem to find specialists in London who just offer surgery. I am sorry that you have had to cope with this for 16 years - I donít remember having face pain for longer than a few years now, so I donít know how you have been able to manage for so long. I have had daily headaches for as long as I can remember (I went to the Drís aged around 8 because I got so many and they just offered dissolvable paracetamol) and that alone was enough to drive me insane.

I had my appointment this morning and I was very nervous! I went in and told him that I had problems with my jaw cracking (I thought I would start slowly before I threw all my symptoms at him lol), how it has always been like this but the past year it has been so much worse and I canít just Ďget on with ití like I have been doing. The Dr seemed a bit unsure of me, but then I mentioned that I have researched it and I think it is to do with my TM joint, at which point he asked me a few more questions. He asked me what I thought was causing it, and for some reason my mind went completely blank! So I said that I bite my nails & skin around my fingers - I do that A LOT - and I also mentioned that I had Ďblocksí when I had braces when I was younger, which move the lower jaw forward which I donít know if that had anything to do with it but I am sure that it didnít help! I forgot to say that I grind my teeth in my sleep, until he mentioned that some people grind. I just went so blank. I forgot to even tell him half of my symptoms. I mentioned cracking and crunching of my joint and headaches and that was it, which I am so annoyed at myself for. I had the first appointment of the day on a Monday, so I kind of just felt like the Dr couldnít wait to get me out of there and wasnít seriously interested in listening to all of my symptoms.

My mum was a trooper though, she mentioned my ears which I also completely forgot to tell him about, of course. I said that my ears didnít always hurt but when they do they feel really bad and itchy like an infection, at which point he whipped out his ear thing and said that there was nothing wrong with my ear just a bit of earwax. I told him that I had already been referred to ENT because I lost my hearing last Christmas for over 2 months or so and the Dr found nothing then, but he wasnít really listening, he was more interested in poking around in my ear. I didnít mention that I had earache or anything or thought I had an ear infection but he still wanted to check; I donít think he believed that my earaches/hearing loss and TMJ could be connected.

So anyway, at the end he said that most people with TMJ problems grind their teeth and therefore need something fitting - I think he said a Ďgum shieldí to me, I donít know if I got that right?? So I now have an appointment with the Maxillofacial dept at my hospital. I donít know whether those guys will check for the TMJ, Iím assuming they will?? Because this Dr just kind of took my work for it that that is what I had, and perhaps I donít (although I am 100% sure that I do!).

He also said that there is nothing else to do apart from wearing a guard at night, and just to take Ibuprofen!! So I told him that I was already taking a load of Ibuprofen but they arenít working, but by then he was already starting to shove me out the door so I gave up lol.

So all in all my Drís appointment wasnít too bad in that I got a referral, but apart from that it was a bit of a letdown. I am annoyed at myself for not giving him more information, but also at the Dr in that he didnít seem to care and was more interested in just getting rid of me. He also did that Dr thing of asking me what I thought it was and what I thought caused it, etc, which annoys me because they are the Dr and should be telling me these things! I am also angry that he told me that besides night-guards there is nothing else that will help me, just take some painkillers! Over-the-counter painkillers as well, nothing stronger was mentioned when I said that Ibuprofen doesnít work for me. I also combine Ibuprofen & Paracetamol occasionally which you REALLY shouldnít do and I donít recommend it, but even that doesnít help me. Just makes me feel queasy

I now have to wait until the beginning of November though, as that was the earliest appointment I could get. I donít know if I can wait that long! I also had to come into work this morning after my appointment and that was the last thing I wanted to do, I just wanted to go home and curl up in bed because this last bout of pain has really knocked me for six

Sorry, that was sooo long!!! Bravo if you read it all lol
Nicolajmp xx

 
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Old 09-29-2008, 12:58 PM   #8
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Re: Advice please - first appointment

Hi Nicola,

I'm glad you got your referral today and I really do hope that the maxillofacial clinic can offer you some help.

I'm not sure how much research you've done so far on TMJ. I've done quite a lot of reading and consistent comments I read are that doctors and dentists really don't know enough about TMJ to advise!

A few years ago I consulted with my dentist about TMJ and he told me that the way to deal with it was to wear a nightguard every night. I paid approx £90 and wore it religously for 6 months and it made absolutely no difference whatsever. At that stage I assumed it was not TMD. I think that was a big mistake. There is so much information out there presently and it appears there is so much more work can be done to help but it needs to be by a specialist who knows what they are doing. There is splint therapy, tens treatment, physio therapy and others that I can't remember, just look up [removed] TMD treatment and there's vast amounts out there.

The consulant I am seeing is called Vinod Joshi. I found his name from 'the International Academy of Oral Oncology' [removed]. I'll past the link below for if you ever need this info in future. On the left of the website if you click 'fellows' it will give details of all the other members, you just have to search the UK ones and click on each one to find their location.

[removed]

This doctor seems very knowledgeable in TMD but at my first appointment I am going to take, in writing, all the syptoms I have ever had and the treatments I have had. I know what you mean about clamming up - things just go out of your head!

It's nice you have got your mum there supporting you (my hubby will be coming with me to my appt). It's good to have someone 'on side' who believe in you. People just cannot understand how bad the pain can get as we tend to look pretty well! I sit at work a lot feeling soooo bad and looking at my colleagues and just wishing I could get on with my job feeling the same way they do. But, obviously, you will understand this

Lancashire is not too far from me. Wakefield is in West Yorkshire which is East to you - about 2-2.5 hrs. I live in Barnsley in South Yorkshire. And yes, 16 yrs is sometime but, at 37, I'm glad that I had the headache-free years that I had in my childhood and teenage years.

I'd like to keep in touch from time to time so we can swap notes. November isn't so far away, it'll fly by until your appointment.

Take care for now

Melanie xxx

[Do not post websites as outlined in the board guidelines or help anyone with a website search. Please read more about this and the other rules by clicking the "Posting Policy" above. Thanks - Well-come Moderator.]

Last edited by Well-come; 09-29-2008 at 06:47 PM.

 
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Old 09-29-2008, 01:16 PM   #9
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Re: Advice please - first appointment

I don't think I mentioned that my pain is also 24/7. I go to bed with it and wake up with it. It varies in degree throughout the whole day and can feel better in the morning or worse. No real pattern to it. Except that now I am becoming aware of TMD I am thinking more about what/where/when it hurts and when i chew a lot, ie steak within 20mins my head/face and shoulder pain really intensifies.

Anyway, just want to say that I really do understand what having constant headache is like and you really are not alone - (although I know how easy it is for us to feel that we are). Lets be determined to have this all sorted out by this time next year!

Mel xxx

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Last edited by mod-anon; 10-21-2008 at 04:40 AM.

 
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Old 09-29-2008, 08:34 PM   #10
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Question Re: Advice please - first appointment

Does anyone suffer earaches like me? Please explain if you do , i have it and im on splint therapy, i don't know how the headaches feel but im a genius with earaches, im trying to keep string but the pain is so painful, and since it doesn't occur alot as much anymore it hurts more as its so sudden!

Any advice?? I hate ears now, i hate them so much !

by the way Nicola don't worry your appointment sounds like how mine first was, persist and be bold .. these measly doctors cant get away with there negligence.. he sounds so so daft no offense but thats the nicest way to put it.. you need to see a dentist beautiful girl an orthodontist..so they can take x-rays...how are your ears, are you also really sensitive about people touching them in the fear they will hurt even more.?

Love lots

 
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Old 09-30-2008, 03:57 AM   #11
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Re: Advice please - first appointment

Hi Melanie

I have done quite a bit of research on TMJ, mainly through lurking at the boards here for so long, which has taught me so much, and I also have two TMJ books although I have only read one of them. I bought those when I was going through a particularly bad bout of TMJ and was feeling very sorry for myself. I am certainly no expert, but I seem to know a lot more about it than my Dr did, which seems to be the case for most people!!

I havenít mentioned TMJ to my dentist because I am scared of him lol, but also because I am at a Private practice and cannot really afford to pay for treatments just yet. Thinking back on it now though, I think back in last October when I first started to really notice how much trouble I had opening my mouth, I had a checkup so I let my dentist know that I may struggle to open my mouth as wide, but he didnít seem at all bothered and proceeded to force my mouth open. Remembering that now, I assume he wouldnít be very interested if I did mention TMJ other than if he can throw a few splints at me and make a bit of money.

I guess my biggest worry is that if I do get a nightguard to help against grinding, that it wonít work like yours didnít do, and then I am going to have to keep going back again and again and again to my Dr until something (if anything!) works. I am not too sure where to go from there, but I will take that as it comes; hopefully I might be a lucky one who gets relief from a nightguard.

Itís good that your husband is going with you I am glad my mum came with me, but unlike your husband I donít feel like she fully understands what I am going through. She just tells me to stop biting my nails, which I know doesnít help but it is more than just because I bite my nails (I officially stopped today, by the way!!)

Regarding people not understanding because we still look okay, that is one of my biggest annoyances! I sit at work and I am really struggling especially as my job is computer-based which doesnít help my headaches but I also have to run around after people a lot, which makes me soo dizzy. It is also a very stressful job and I find myself clenching my teeth/jaw. But because Iím not obviously ill, I donít feel like I can complain about it or ask for time off. TMJ is such a hard thing to explain to people who donít know what it is. I feel like if I rang in sick saying my jaw, etc, hurt that no one would either believe me or think that I was throwing a sickie. I just hate that I am having to suffer through 8 hours of work. I have only taken off half a sick day since October 2007, and that was because my TMJ was really, really bad. And yet my colleague with her mysterious Ďstomach bugsí that she keeps getting has been off approx TWELVE days this year so far and no one says anything.

It is good that you got at least some headache-free years what I wouldnít give to have that! People think I exaggerate when I say that I get headaches everyday but I donít; I wake up with stiff neck/head and a headache and have it all day until I go to bed, and then wake up and start all over again.

Iíd certainly like to keep in touch I will definitely be posting about my Maxillofacial appointment, fingers crossed that it will help! When is your appointment with the TMJ specialist?

Temera2 - I do suffer from earaches, although mine arenít constant. For example, about 2 weeks ago I was really suffering and they were itching and they hurt really deep down like ear infections do, I felt like crying they hurt so bad. But now they are only itching a little bit and I have lost my hearing slightly in my left (I am always losing my hearing) but are not hurting too much at the moment. I understand what you are going through, it is awful to have ear pain but nothing you can do for it. At least if they were ear infections then some antibiotics would help. I wish I had some advice to share with you, but I havenít found anything that helps so far. All I can suggest is being careful when you do everyday things that others take for granted - for example, I answer the phones a lot at work, and I have to be careful when putting the phone to my ears as if I bump it then it hurts so much. I also donít use my earphones to listen to my iPod when my ears are bad, they are too sensitive to do that. I know that probably doesnít help, but I hope there is at least a little bit of comfort in knowing you are not alone with your ear problems.

I know I need to get x-rays or an MRI or something done, hopefully the Maxillofacial people will sort that out. If not, then I have no choice to bring it up, as I canít believe that they are just taking my word for it that I might have it.

I did go to an Orthodontist when I was much younger (I think I was in Year 7 Secondary School, so would have been around 11 I think?) but she never mentioned that she saw anything. I have read that braces can mess people up, is that true? I had a few different ones for around 4 years, I had some temporaries and the wired ones that are cemented on, but I believe that my blocks could be what messed me up? They were about 1 Ė 2 inches long, and they brought my lower jaw forward. After getting rid of my braces, I remember my jaw did keep cracking, but I wasnít too bothered about it as I assumed it was just because I had brought my jaw forward and nobody mentioned anything different. It wasnít that big of a deal at the time anyway - I had headaches and my jaw cracked now and again, but not enough to bother about, but no pain as far as I remember so I left it at that. My teeth are also slowly reverting back into a different position, they are definitely not so straight anymore, particularly my bottom front ones, so Iím assuming my bite has changed somewhat and therefore that could be causing pain as well?

Nicolajmp

 
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