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.