I have not posted an update in awhile, but I just saw the chief of oral surgery at shands hospital about a week ago. He said that even though I will need the bilateral tmj joint replacement surgery in the future, he wants to try the joint flushing procedure at least 2-3 times before they will do it. He also said that it might not help at all, but since they are a teaching hospital, they will not do an invasive procedure on someone my age (25). I was very dissapointed, because all of the surgeons/specialists I have seen so far have told me that the flushing will probably not work for my condition, and all of them wanted me to get the surgery done. I have seen a facial pain/tmj specialist, 4 oral surgeons, a couple medical doctors, and a few dentists and they all said that my case needed surgery.
I was waiting for my previous surgeon to do the procedure (she is the best in town, and I trust her), but she broke her hip a week before my surgery was scheduled in early September, and she thought she could still do it a couple months later, and they had me waiting and waiting. Then they told me she would be retiring and not doing any more surgeries. They sent me to Shands, and now I have to go thru at least 6 months of treatments before they will do the surgery that they say will most likely be needed. I am frustrated because I have already been out of work for 6 months, and if this procedure does not help me, then I will be out for another 6-12 months. I wish I would have known that my original surgeon would not be coming back, because I would have been trying to get in to see someone else instead of waiting for her. None of the surgeons in my town will do the procedure, because they say my case is very difficult/complex. They wanted this specific surgeon to do it because of her experience. So I waited and waited. Now I am having to start all over again. I have had numerous opinions on this issue. Even the doctor at Shands said that he is not sure if this flushing procedure will make my pain better at all. He gave me a very small percentage. I don't really have any options at this time. I just have to do it, and hope they will do my surgery soon if it does not work. They said this is a temporary "fix" and may help a little bit, but that I will need the surgery eventually. I want to have it now so I can go back to work and not have to take the pain meds anymore. I guess they don't care that I am not working and don't have money.
My primary care doctor ref. me to a pain mgt. doctor, and they cannot see me till mid Jan. I was told to just wait till I see them to get any help with my pain now. They were giving me pain meds, and helping me with my anxiety, but now they will not treat me because they think I need pain mgt. I wish they would help me till I see the new doctor, but I have tried to call and leave messages, and they won't even call me back. They said that I was on too many meds, and they decided one day to cut me off. I understand that you are not supposed to be on pain meds for an extended period of time, but this is certainly not my fault. I have been bounced around from office to office, and they all say to see another one, because they either don't feel comfortable doing my surgery, or are worried about my young age.
I am really getting fed up. I am paying for my health insurance thru cobra, and it cost about $1000/month. I have to keep my same coverage, or this will be a pre existing condition. I am not working and my original surgeon was so nice and was trying to get it done fast for me, but then everything fell apart. I don't even feel like the new surgeon I just saw was very nice or caring. I totally trusted my previous surgeon and have had a procedure done by her before. My family has gone to her as well. I wanted her to do it. I don't even feel comfortable with the new doctor. He seemed to be judging me during my consult. I was crying and probably looked crazy, but they were not very nice and treated me like a druggie. I did not ask for pain meds, but I did ask about who I should see for pain mgt. till my procedure. They said that I need pain mgt. because the procedure "most likely will not relieve all of your pain, and you need someone to help you with the pain over a long period of time". They then manipulated my jaw for about 30 minutes, and tried to just send me on my way. They said to come back in March for the procedure. I pitched a fit, and so did my husband. We have already been waiting for over 6 months. They finally broke down and gave me an appointment in mid December. My husband asked to talk to the doctor again, and they gave me a very small rx for a few pain meds to get me thru the weekend. I don't understand why they say they agree with my pain and my symptoms and then refuse to help me with my pain.
If anyone else has been to see a pain mgt. doctor for their tmj, please let me know what procedures they did for you, if any. I need help with my pain and anxiety and do not feel like my primary care doc is taking care of me. I know I need to find a new one, but what can be done in the interim? I don't appreciate being treated like a druggie. My doc had been giving me pain meds for 4-5 months, and then he freaked out and said that he could not give me anymore meds. He won't even let me come in to see him. They don't even return my calls. I am not asking him for meds, I just wanted to see him to let him do his exam and tell me what to do next. He said that he does not feel comfortable treating this condition and that I need to have the surgeon or pain mgt. doctor treat me. What is the point of having him as my doctor if he won't even see me. If anyone knows of a good primary care doc in Tallahassee, Florida please let me know. The pain mgt. doc I am seeing in mid Jan. is Dr. Arcos. I have heard good things about him, but would like to know more. I would greatly appreciate any info you can provide. I am mostly interested in knowing more about pain mgt. treatments for tmj surgical patients.
I am very intersted to see what treatment you all have had with pain management. I was told to stay away from any types of injections in my jaw/face. It makes it worse. I already do non chew diet, ice/heat, jaw excercies, massage, anti inflammatories, topical numbing creams/sprays, try to avoid stress, and use a custom bite splint that was made by a great tmj specialist. I even wear it during the day. I usually take muscle relaxers, and need pain meds when it swells up and gets locked into place. The pain gets worse as the day goes on. I always wake up with a horrible headache, and then the pain gets worse all day. By evening, I am throwing up from the pain and crying every single night. I can make it thru the early part of the day without any meds, besides advil. By afternoon, I need stronger meds, and then at night I am sick from the pain even with pain meds. I have been told I have a combination of muscular pain, joint pain, fluid build up,facial pain, and migraines. I have tried a slew of meds for all of these issues over the past year. I built up a tolerance to the meds, and then we would switch to another med. Then the doctor had me on Percocet for a couple months, and he stopped giving me any help at all. I did not ask him to continue the meds, but to at least give me whatever he recommends to help me with the pain. He would not treat me at all and said to seek pain mgt. I think he even told the new surgeon bad things about me, because I have never been treated like I was when I saw the new surgeon. I think I am being labled a drug seeker. I don't get how the docs can recommend that I be on Percocet and Hydrocodone for months and months, and then say I don't need anything anymore. How would my pain just go away?? He is the one who put me on the meds and continued them for a long period of time. If I needed them then, why would I not need them now??I hope to hear back soon. Take care.
I am sorry your story continues with no happy ending in the near future. It is beyond me why the physicians are refusing you pain medications when they were offered before. Your pain sounds horrible and we all know how untreated pain, or even treated pain can reek havoc with your life.
I suggest you request copies of your medical file for the physician that you believe has labeled you. You can't fight or argue effectively any statements you are not aware of or that you just suspect. You may want to request the your file covering the past six months or when ever he began prescribing narcotics for you. I also suggest that you change PCP. This one does not appear to be your advocate with other physicians.
I will bore you with my PCP story and try to make it as short as possible. I was a medical professional and part of a small close knit medical community I had many, many friends in the profession, including my best friend. I was warned by most of them that my PCP was doing me harm. Most of my friends had access to all or parts of my medical records or others heard conversations that my PCP was involved in with other medical providers. All of us medical professional are bound to confidentiality. Breaching that could mean our job and worse our professional integrity. Not one would tell me details just advised me to change PCP. I thought my PCP was next to God. Finally my best friend advised me to request copies of my file(s) and correspondence that he made as he referred me to specialists. I was shocked. There were multiple lies in my records. I quickly discovered why no one was taking me serious. My attorney wanted me to sue my PCP but because it was a small community, I refused. I quickly changed physicians but the damage was done.
Why he disliked me so much is another very long story that I won't go into but that PCP ruined my credibility. He is the major reason it took me years to obtain a proper diagnosis and treatment. Don't let this happen to you. Get to the bottom of why physicians are not listening to you. It is possible it is something in your medical records.
I could be 100% wrong. But nothing else makes sense to me as I read your post. Certainly it can't hurt to know what's in your file. And by changing PCP you have nothing to lose. These are only suggestions. You must do what is best for you. Again I wish you the best of luck. I am very glad you updated us. I will look forward to your next post. Peace, Tuck
Thank you so very much for your reply. I appreciate your help. You have helped me out before and I thank you for that. I did request my medical records a few weeks ago, because I needed them for my surgery consult. They did not say anything bad, but also did not list any of the meds that I was given during the last 3 months. The notes from my actual in office visits showed the meds given, but there were no records regarding the meds they gave me after that. Weird. I can get my pharmacy records from the pharmacy, but aren't they supposed to record every rx written? My husband always picked up the rx's for me at their office (since it was percocet and could not be called in). They said that was all they had in their files on me, but it does not show anything but the first couple vicoden rx's given to me. Nothing about the percocet or the xanax that they had me on for a couple of months. I found out that the nurse that was handling all of my rx's was "let go" from their office. I don't know if that has anything to do with it, but the front desk told me that is why my phone calls were not being returned. When I saw the surgeon at Shands and he asked what meds I had been on, he was looking thru the records, and said that he could not find any documentation about the percocet and that is why they did not want to give it to me. (They ended up giving me a few after my husband chewed them out) I was on the percocet for at least 8 weeks before they cut me off, and before that I was on Vicoden for a few months. Now I only have the records about the first couple rx's of the vicoden and that is it. I will call the pharmacy tomorrow. It is a small chain, so they don't have the option to print it online or anything. I am glad that you sugguested that to me. Also, whenever I called him in pain to ask for help, they never asked me to come in they just wrote out a rx. I even asked to come in several times to be seen, and they said not to worry about it. I read my records and realized I have not even been seen by him since early August!! I have just been seeing all the specialists since then. I am on bedrest, so they told me not to worry about coming in. Now the new nurse was saying over the phone that "You did not even come in to be seen, so we cannot treat you. You just called for meds". I don't understand. I tried to explain it but she said that the previous nurse does not work there any longer, and she cannot figure out why I had not come in and that she did not know why I kept calling for meds and did not want to come in to be seen. I am going to call the pharmacy and get those records, and then call around to find a new primary care doc. Thank you so very much for your help. You are very kind to help me out. I have not gotten an rx from this doc since October. I have been trying to stretch out my meds since then, and now and without any. I am still in horrible pain and I don't see why they would think that it would just go away on its own. I think this may have had something to do with the previous nurse not recording/documenting things correctly or something. I just know that when I called today, the new nurse sounded very confused and did not know anything about my current situation. I had to explain everything to her all over again, and she just acted like she had no clue at all. When I see the new PM doc, are they going to treat me badly? Am I already labled as something bad? I am so upset by all of this. The lady I talked to today did not understant why I was even on bedrest. She kept asking me why I could not just go back to work. DUH!! I was totally shocked. Oh well. I will be calling them tomorrow to let them know just how I feel. I don't think it will matter, or change anything but I still think they should know what is going on. I think they are all very confused. I think he realized how much medicine he was writing and freaked out and just pulled me off everything. I don't know another explaination. Let me know what you think. I hope to hear back from you soon. Thank you so very much. I will let you know what happens as I speak to them and the new office. Take care.
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