where to next? in TMJ SUPPORT Forum

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where to next?

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arty 21	where to next?	Lead	[-]
Member Posts: 4 (06/21/08 16:14:51) Reply Quote More My Recent Posts	Tags : None Remove this ad hello there, its my first time on the tmj talk, read a lot of posts, wish you all find some relief from this invader that tries to rule your life. I realize after reading some of you posts that my tmj is not as bad as i thought, but i still would like some feedback on the symtoms i have. Started with bad pain in left jaw 26 years ago when living in australia, (seemed to come on after a car accident) 3 months later. There was not hardly any help then, just told to eat soft food, and relax. Had pain bad for 10 years and blocked ears, and dizzy, then moved back to uk, no better here, syptoms started changing a little, more grinding in joint, and itchy ear (left side only) so struggled on as best i could with ice and heat ect, had x ray at hospital clinic, was told nothing showed up, and the same story eat soft food, then 2 years ago due to a bad episode at the dentist, all my teeth started to feel like electric shocks going through them when i ate, was in agony for over 1 month and my face swelled up like a ballon, so after many sleepness nights i decided to have my teeth removed, and got dentures, thats when the pain eased but was replaced by a feeling of swelling inside the joint, and pressure on a nerve which makes my face and head tingle, and my ear feels like something is crawling inside it, and my right jaw which never gave me any discomfort now pops out of joint now and then, i went to usa last october to see dr ira klemons, had an orthotic made , to fit over bottom denture, and injections in the ligaments, tests showed stretching of the collateral ligaments,and displaced condyles?, got back to uk and the orthotic doesnt seem to help, so i seem to be back to square one. i wonder if getting a neuromuscular denture would help, cant get one here in uk, so it looks like the usa again, i have found a dr cooper in ny , but my son lives in maryland so will do a google in that area, ive gone on a bit, but a first posting is a bit hard to edit it down ,. any suggestions will be great, thanks and good luck to all out ther searching for a relief from tmj.
feelines		#1	[-]
Posts: 1878 (06/22/08 23:44:36) Senior Member Reply Quote More My Recent Posts	I like this group at www.iabdm.org and there is someone in Maryland. Tackley (Kevin) posts here at TMTtalk sometimes, and he is from the UK. Maybe he will pop in here. I hope everything works out for you. Let us know....
Elaine2004		#2	[-]
Posts: 2777 (06/24/08 21:25:09) Senior Member * Moderator * Reply Quote More My Recent Posts	arty, Welcome to TMJTalk. Please feel free to post and ask as many questions as you want. There are some of our members going through tough times right now so the response time may be a little slow but they will respond. My TMJ was caused by a car accident so it is very possible that could have caused your's. I recently had a splint made and was doing ok until a few days ago. I had one of my monster headaches and it lasted over two days. The splint has helped as I was waking up with daily headaches. I am still not sold on them but I am trying. I don't know what to suggest except read through the many posts on the board and hopefully something will help you. Once again....Welcome!! Elaine
Michelle Denise	Welcome	#3	[-]
Posts: 6585 (06/24/08 22:27:02) Senior Member * Moderator * Reply Quote More My Recent Posts	I don't know of anyone in Maryland, but I wanted to say Welcome. Hopefully, someone will have a suggestion. Sincerely, Michelle
tackley		#4	[-]
Posts: 112 (06/25/08 04:56:33) Member I Reply Quote More My Recent Posts	Hello Arty, sorry to hear of your problems. I too live in the UK & ' touch wood ' am nearly over all my problems. I don't want ot tempt fate but I really feel that I'm near to finishing line. I too have been to see Dr Klemons, I went back about 5 or 6 times,even having the surgery where he attempts to deaden the nerves. This proved useless, although I'm glad I tried it. I did find the injections helped a little. Before going to the US again please consider Dr Graham Munro-Hall in Befordshire. You can google his clinic. Although if you can't find it I will give you the details. He specialises in Amalgam removals and Cavitations, I suffered with both of these, but he did say my main problem was the position of my jaw. He has gradually fixed my bite. It wasn't an overnight thing, it has taken 2-3 years. In this time I have also had Ozone injections, which he gives, and prolotherapy injections at a clinic near Chichester. If you need to contact me my email address if elliottdempsey@aol.com. Kevin, near Oxford
arty 21	thanks	#5	[-]
Member Posts: 4 (06/26/08 11:50:45) Reply Quote More My Recent Posts	thanks for your reply, i didnt expect so many replies, its nice to know other people are helping each other as best they can, will keep reading posts.
arty 21		#6	[-]
Member Posts: 4 (06/26/08 12:28:36) Reply Quote More My Recent Posts	thanks a lot for your warm welcome, had a bad day yesterday, nerve pain and tingling in face and ears was horrible, got a good sleep though, (most probably from sheer fatigue) put on a relaxing tape at bedtime, and massaged face with a hot towel, cant take a lot of pain killers as seem to be allergic to most, i once tried tramadol and ended up in A&E , so its more the alternative route for me. (wish it wasn't) wish there was a good massage therapist in the uk, like boris polinski, don't think i spelt his last name right, saw him on you tube, under medical massage for jaw and joint disorders, it looks sooo relaxing, but he is in the states, seems you have so much more choice there, than in uk, some practitioners, medical and massage, and alternative over here have never heard of tmj, well thanks again for all your replies, best wishes, and many painless days and nights to felines, elaine, michelle, and tacky, yours arty 21
eakthekat	Allergic to painkillers	#7	[-]
Posts: 515 (06/27/08 13:37:15) Senior Member Reply Quote More My Recent Posts	Arty, Have you been told that there is a specific compound you're allergic to? Tramadol/Ultram/Ultracet is an NSAID. All of that line gives me incredible stomach upset. What about Lortab/Lorcet, Vicoden/Vicoprofen, Methadone, Demerol, or MScontin/Oxycontin? I have a friend who is allergic to synthetic codine, but can ake Darvon/Darvocet, and Tylenol 2/Tylenol 3. There is always Meperidine, which is straight Demerol or Mepergand (sp?) which is Demerol and Phenagren. Demerol is usually what they inject you with when you go to hospital. If you want to ask me any pharmaceutical questions, I'm basically a walking pharmacy... as are most of us. I'm very knowledgeable on narcotics and creams. Elaine, Michelle Denise, and Ken are knowledgeable on Topamax, Neurontin, Lyrica and such. Robin and Feelines are knowledgeable on the herbal side of things. We are all knowledgeable on anti-depressants and various treatments. We all know so much in so many various areas. Please feel free to ask. I'm also a 26 year sufferer. Mine started at 7 years old. It's inherited in my family. My 7 year old started showing signs when he was 5. My infant has a smaller lower mandible like both my oldest son, and myself. Luckily, my middle son is not predisposed to TMJ. Like I said, if any of us can help, just ask! ~Tecee~ :rose Last Edited By: eakthekat 06/27/08 13:44:02. Edited 1 times.
ginnic		#8	[-]
Posts: 460 (06/28/08 00:26:57) Member I Reply Quote More My Recent Posts	Remove this ad Hello, With all due respect, noticed the reference to Ultram/Tramadol as a "NSAID" and I would like to see some of the information on this particular drug checked/referenced again. As a registered nurse who occ works with pts who take/have taken it for their pain, I have never heard it call an NSAID nor referred to as such. Most of the pharmaceutical info out there refers to it as a narcotic or "narcotic type" drug category. Listed as used for moderate to severe pain/incl chronic pain. Has a fairly significant risk for both physical and psychological dependence, stated in various medical literature. To my knowledge it is a synthetically manufactured medication (i.e. not obtained from opiates specifically). My own interactions with the patients taking this drug on a regular basis have yielded myself and some of my coworkers in surgical recovery one interesting observation - pts taking this drug for awhile at home before coming to hospital for surgery (frequently back patients or about to be joint replacement patients) is that I can give them some pretty strong drugs and doses of narcotics in postop - like Morphine, Dilaudid - and it doesn't seem to touch the pts who have been on Ultram for awhile. To me, that is not a good thing.............. People may wish to look into this drug before taking it......... Ginni in WI
eakthekat	NSAID	#9	[-]
Posts: 515 (06/28/08 11:28:10) Senior Member Reply Quote More My Recent Posts	Ginni, I referred to Ultram as an NSAID because that's how a doctor described it to me. Now, that particular doctor may have been wrong, but I didn't know. I have always been told that it was a non-narcotic pain reliever most closely related to NSAIDS than to a narcotic. You are correct, I did not research Ultram because it's been a while since I was on such. I was simply repeating what I was told. I go to a teaching hospital for my TMJ. It could have been a resident who told me such. I got this from Wikipedia. I hope this clears up the misinformation and explains why I was told it was an NSAID. Sorry to have been misinformed. Unlike most other opioids, Tramadol is not considered a controlled substance in many countries (the US and Australia, among others), and is available with a normal prescription. Tramadol is available over the counter without prescription in a few countries.^[3]. Sweden has as of May 2008 chosen to classify Tramadol as a controlled substance in the same way as codeine and dextropropoxyphene. This means that the substance is a scheduled drug. But unlike codeine and dextropropoxyphene, a normal prescription can be used at this time.[2] Tramadol is sometimes mistakenly classified as a non-opioid analgesic, because its abuse liability is lower than that of other opioids and because it has multiple mechanisms of action (including, but not limited to mu-opioid activity). I hope this helps. Again I'm sorry for misleading Arty. I was simply trying to give a list of other opiates to try that he might not have tried. The rest of my previous post is correct to my knowledge. Please correct me if it is not. ~Tecee~
MaggieMay78		#10	[-]
Posts: 964 (06/28/08 12:08:41) Senior Member Reply Quote More My Recent Posts	I also just wanted to add that Ultracet is different...it is not just tramadol, but instead is a combination of tramadol AND acetaminophen. Just wanted to make sure everyone is aware of that...I have taken plain tramadol before, and it did help me a bit. I have never tried Ultracet though...
ginnic		#11	[-]
Posts: 460 (06/28/08 21:07:57) Member I Reply Quote More My Recent Posts	No problem, and I hope I wasn't too dogmatic in my reply! :>) If so, my apologies. I just didn't want the info to keep circulating if it were incorrect and I was pretty sure from my work based knowledge there was more to Ultram than being an NSAID...........drives me nuts when doctors blithely give drugs to pts and tell them "not to worry"........they really REALLY need to make sure people are aware of the pros and cons of each drug and then let the pt decide if they want to take it etc. I used to use a specific steroid eye drop for my allergies. My eye MD was really careful about how it was prescribed and he made super sure I knew about it and the risks if I were to be tempted to overuse it if my allergies got worse, etc. And, he made me come in for pressure checks on a regular basis or he wouldn't renew the subscription. Well, my HMO and he parted ways. I went to him for several years and paid out of pocket because I liked him so much. But it got pricey and I decided to switch to an HMO eye MD. Went to someone who came recommended by several of his patients (none of them were medical professions, just for a point).............he was not overly impressive by any means, had me try a different "allergy eye drop", told me I could use it "several times a day" as needed and sent me out the door. He gave me samples of it. I read the label and I swore it was steroid based. But I remember that he said specifically to "try this one it isn't a steroid".........so I went to work and looked it up. Damn, YES it was a steroid. Idiot. Now I knew to be suspicious, but an awful lot of folks wouldn't be! Not right IMHO that he should be so cavalier! As to the note someone made about the Ultracet - as a general rule (no idea why this evolved) be aware that if you see "cet" attached to another drug - like Percocet, Darvocet, etc......it is the "plain" drug with added acetaminophen/Tylenol. They should be telling pts that also, cos there is a maximum dose of acetaminophen people with (healthy) kidneys and livers should take daily (I THINK 4 gms but not sure, so don't assume that is correct) AND that is a total, AND shouldn't be adding alcohol to the mix (because alcohol is broken down by the liver and so is acetaminophen). Many pts are never told that, so they take the drug AND then they take Tylenol on top of it. Tylenol poisoning is NASTY stuff, trust me. Ginni in WI where the weather has been rather odd all day long
eakthekat	Tylenol in pain medication	#12	[-]
Posts: 515 (06/30/08 08:54:05) Senior Member Reply Quote More My Recent Posts	Ginni, You were a bit tough on me, but I deserved it. I should've made sure about Ultram/Ultracet before I posted. Your story of your eye MD was a great example of what happens quite a bit in the medical profession, especially with residents, I've noticed. Not trying to condemn all residents, just most of the ones who I've seen at LSUMC. I had a fabulous resident at first, but he graduated the program... sigh.... The next three were the "here take this" kind who explained very little. As for the Tylenol portion of the discussion, I never thought to mention it because my mother always told me to never take Tylenol with ANY pain medication. When I was old enough she taught me to look for the APA on the label. She always said that if it said APA 500, to not EVER take Tylenol with it. If it says APA 325, you can take one Tylenol 250 and be safe still, but to never ever EVER take the pain med with Tylenol too close together. My mother was a receptionist/nurses assistant in a doctors office for years in the 70's. I truly have Maggie to thank for mentioning it, because I would never have thought to explain it. Ginni, please tell me if my mom's rule is a good one to teach my kids when they're old enough, or if I should adjust it in some minor way. Thanks for keeping me straight! ~Tecee~ The weather's been odd here too!
Michelle Denise	Just want to make this clear to newbies.....	#13	[-]
Posts: 6585 (06/30/08 10:24:35) Senior Member * Moderator * Reply Quote More My Recent Posts	Hi Everyone, We all have the best intentions on giving newcomers the best information we have based upon our own experiences with TMJ providers such as surgeons, doctors, TMJ Clinics, and hospitals. Here on TMJ TALK we can tell you how a certain medication worked for us.. Tecee was just providing information based upon what she remembered even if the information given to her was not completely correct. It is important that everyone especially newcomers remember individuals here on this board, whom I have know for quite some time, have suffered greatly with many surgeries such as Tecee and Ginnic. Tecee I know you recently mentioned you have underwent a couple more surgeries since we last spoke. I know you had undergone several before that back a couple years ago. Ginnic I know that you have also had at least two surgeries. I also know that you work in the recovery room as a Post Op RN for quite some time. I know this must require a great amount of concentration and observation on your part. I am very thankful you are able to do this type of work in nursing as it would never be for me, but I am very glad people like you can stand handle the stress. I would have to work in home health or a doctor's office. I would not be able to work in such a high stress environment. Myself I had one bilateral surgical Mitke Anchor arthroplasty in 2003, and it has been enough for me. I don't know that I will have another one unless I am sucking all my food through a straw and my pain is out of control. I might then consider another one if they haven't developed a pain pump that dispenses pain control medication just like a PCA (Patient Controlled Anesthesia). They have something like this for diabetics, and it gives the individual insulin during the day as needed to control a person's diabetes. I am sure these pumps are used for more brittle (severe) diabetes. I really am not kidding about the pain pump. Ninety-nine percent of us are not in the medical field. and I think that is good for members to keep in mind. That does not mean we have nothing to share with you new TMJ patients, who are looking for answers. I am saying quite the opposite. The best advice can come from a patient that has been through the process. What I am saying is don't take everything we say as 100 percent correct. We are NOT in the medical profession and are just TMJ patients. We have some very intelligent people here with great advice. Everyone makes mistakes as I have posted something incorrectly that I thought to be true. Again, I have even had doctor's make mistakes. One time when I was working in a large medical clinic a doctor told me to give a Methrotrexate injection to a RA patient. I looked back at her last injection, which was a totally different drug, but in the same category. I asked the doctor, "You want me to give her Methotrexate this time?" She replied, "Yes, why?" This was a very smart on her toes rheumatologist, so she knew something was amiss when I questioned her as I never did. I replied, "Last time you gave this patient this drug and I pointed to the chart." She replied, "Oh, I didn't catch that thanks for pointing it out." It wouldn't of hurt the patient to give her this different drug, but it was not the drug they were trying at that time. We all know everyone makes mistakes even the best of the best. The health system is suppose to work together with each other checking each other to catch mistakes, but I think a lot of extra steps are being cut out due to lack of time/staff. That is why we have so many drug errors and staph infections now in the hospital. Anyway, that is my opiniuon. It is important that we all advocate for ourselves! You must watch out for your best interest and be aware of what you are taking and watch for errors. I hope everyone views this as a friendly reminder for all of us. I intend for it to come across as nothing more. Take care, Michelle
MaggieMay78		#14	[-]
Posts: 964 (06/30/08 14:29:49) Senior Member Reply Quote More My Recent Posts	Great post, Michelle! You are totally right...we all have the best of intentions, but may occasionally mess something up when talking about medications, dosing, side effects, surgery, you name it...we are all just human, and as it was pointed out, doctors make mistakes too! I so agree with Ginni that doctors need to clearly explain what is in every medication they give to patients. I was given Percocet several times after my hip surgeries, and no one ever mentioned that it had acetaminophen in it. Fortunately, I didn't take any Tylenol on top of it, but still...I should have been warned, because I might have ended up taking it and not knowning any better! Grrr... Ginni, that's a crazy story about the eye doctor, but doesn't surprise me...as I said, doctors are only human too, and also, some are just not as good as others! I once had a surgeon tell me that it's not right to assume that they are all equal...people put all kinds of time into looking for a great hairstylist, auto mechanic, wedding photographer, etc....but many don't realize that they should do the same when looking for a surgeon who is going to operate on their bodies!! Of course, I am NOT saying that this would be a guarantee against all complications/problems...even the best surgeons still have cases with complications. BUT, overall, I agree with the surgeon that told me this...and I am now very very careful about who I let operate on me (or even prescribe me medicine!)
ginnic		#15	[-]
Posts: 460 (06/30/08 19:27:14) Member I Reply Quote More My Recent Posts	Remove this ad Hi Everyone - Good posts EVERYBODY! :>) Teecee I TRULY apologize if I sounded grumpy, gosh, I sure didn't mean to, I really did not and I thought I tried to point out the reason I was saying what I did "gently". So please, accept my apologies - it is always difficult to know how to take things sometimes when you can't see the speaker's face or body language! And, speaking of, what happened, when we "went Yuku" to all those great little characters and "emoticons" etc? I really miss them! Are they hiding?! It is true, not only are we all responsible for ourselves, it helps us to keep looking after each other! I know I mentioned a long time back I began taking a friend to almost all my appts with me. First I did it because I had had such a horrible experience with the first out of HMO specialist I was assigned to..........I wanted to never be alone and without a witness again over her horrible behavior towards me. Then, even after I got used to and VERY comfortable with my now retired (sob) wonderful jaw surgeon my friend came with me - we enjoy each other's company (good enough reason), stopped for lunch always (!), but also because it really helped focus me - she could keep me on track and remind me to ask things or sometimes she would ask something I hadn't even thought of - it would occur to her as she was listening to interchanges between Dr R and myself.........now that I will be taking up with a partner of Dr R's, my guess is Jayne will be coming along with me whenever possible so she can "check him out" haha! She also likes to check all the cute residents out LOL! I have had very nice residents - really all of them - every one of them has been nice. I think the entire oral surgery program at Froedert Hospital/MCW seems to be very patient oriented. The last resident I had - man, I wish HE had set up practice in Milwaukee - but he is in north/central WI and if anyone wants his name I don't know exactly what practice he joined but I know he said he would be practicing in Appleton WI. Great guy and I bet he will be an awesome person for his patients. As to the ? someone asked me about Tylenol - just remember folks - if it says it has Tylenol/acetaminophen (sometimes called APAP) be careful how much you take and be careful other meds do not have it also or if they do BE AWARE of your total intake daily. AND for any pet owners on here - keep it (and all) drugs AWAY from animals. They can get kidney and liver failure very easily from ingesting human meds and Tylenol and aspirin esp.....(yes, some vets will say use aspirin in SOME dogs but you do need to go by their specific instructions!) I have a friend who had a large breed dog who got kidney failure as a youngster from eating Tylenol - he lived for a number of years after that but it wasn't pretty and he had to go pee every few hours - they literally never left the house for years due to that (talk about a guilt trip). And, whoever said we don't put as much effort into finding a good surgeon/doctor as we do into mechanics etc well said! I am often amazed at how pts sometimes end up with a poor choice (they are out there, sadly) and just go to that person because their doctor said to - ASK AROUND - ask other patients - find nurses who work at a hospital or clinic with that doctor ASK ASK! As nurses, we are not allowed to say "Don't go to Dr So and So" legally - (I would to my close friends) but we also might not offer his/her name up we might just ooops "forget to tell that name to you". If someone does that, take the hint! Ginni

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