I'd suggest that you seek medical help ASAP. Please let us know how it goes....but please get medical attention.

Thank you! I have contacted my doctor and am currently awaiting his call back. It is an automated system and I have to leave a message before someone will call me back. I told them what was going on and that I want a new MRI asap. My husband said he can drive me to the doctor later this afternoon if they want to see me. They usually don't even want me to come in, as my surgeon has explained to the doctor that there is no treatment for my condition other than medications while I wait for surgery. I told them this is an emergency and that I need another prescription for percocet and an MRI. Hopefully they are not too busy today to check their messages. Sometimes I don't get a call back for a day or two. I made it sound urgent in hopes they will call back today. I will post again this evening after hearing from them and possibly going in. Thank you for your concern. I really appreciate it. Not too many people understand what I am going through, as you cannot "see" the pain. It's nice to have found a forum where I can talk to other people who are in the same position as myself. Talk to you soon, with good news I hope.

Aha. Yes, today is a holiday. I hope that you hear from them soon. Do you know which doctor will perform the surgery if necessary? Have you looked at her/his credentials?

Yes, the surgeon who is doing my surgery is great. I have seen about 5 total to get opinions. They agreed that this particular doctor is the one who should do it. She specializes in this sugery. I have even seen surgeons in other states and other towns who did not feel comfortable doing my surgery as it is complex. They recommended the surgeon I am seeing for the procedure in December. My only option is surgery. That is how bad my case is. I have tried other procedures for years now, and they say it's too far gone. I have no tissue left in my joint space according to the MRI. It's just bone on bone. They said that in itself could cause a fracture (hairline). It feels like that now. It feels like when you have a cracked tooth and you feel the pressure as it expands and contracts. That is how it feels in my jaw bone. I also took a couple blows to the jaw/face from my 2 year old son. He was playing around with me on a few occasions and his head hit me in the jaw! The last time, he was jumping on the bed and I was holding his hand so he would not fall and he fell forward and head butted me in the face! He is a rough and tough little guy! It did not hurt him at all (he is stong headed!) but it certainly hurt me. Maybe these recent impacts have added to the fracture. I have swelling and very severe pain. Still waiting on their call back. I have been on the vicoden for months now, and now they have switched me to percocet. It works so much better with this new pain, but I know they will not want me on it for a long period. My surgeon had me scheduled for September, but broke her hip while on vacation the week prior to my surgery date. Now I have to wait till December. She is the only one who I feel is qualified to do the surgery, as I have seen so many different specialists, and they flat out tell me that this case is so complex that they don't feel comfortable!! I am having both sides of my jaw joints replaced with scar tissue from my c-section, and they are also breaking my jaw to reposition it. I will be wired shut for 4-6 weeks, and then on bedrest for another 4-6 weeks. I have already been out of work for 4 months. Before that, I was missing work at least a couple days/week because of the pain (migraines, nausea, vomiting, etc). The pain gets so bad that I just throw up. It is getting really hard to deal with. I cry all the time because I have to just sit here and wait. Even the injections that numb the area in my joint space only last a few hours and then the pain gets way worse afterwards. I don't even bother with those anymore. I end up black and blue and swollen. It only gives you relief for a few hours and the injections are so painful as well. Sorry to ramble on. It's so nice to have someone to "talk" to!! Thank you so very much for your support. It feels nice to have support. I don't know anyone else personally who has chronic pain that is my own age (25), so it's not easy for me to communicate with others. It feels so nice to vent. Thanks again. I will let you know what they say.

I'm so sorry to hear of your extreme pain...it makes the joints in my body ache to hear about it. Good luck!!!

Thanks for your support! Still no call back from the doctor. I am starting to worry as they close soon. I will be out of meds tonight. I hope they call me back. I cannot drive so I have to rely on my husband.

I finally got a hold of my doctor and they wrote me a new prescription and referred me for an MRI. They think it may be fractured. At least they are understanding people. Hopefully I can move up my surgery date if the MRI shows something. I have to take muscle relaxers before the MRI because I can only open to about 7 or 8mm. They have to pry your mouth open with this huge plastic thing for over 30 minutes. Last time I had so much pain afterwards, but now that my pain is so bad already, I am very nervous. I will let you all know what the MRI shows. Hopefully it will speed up the surgery date. Thanks so much for your help!

You poor thing! I'm glad that the doctors and staff and understanding. When's your MRI scheduled?

My MRI is this Thursday. I am going to do it this week because next weekend is my son't 2nd birthday. I don't want to be laid up in bed on his birthday! We are having family and friends over and I want to rest up as much as possible. I am very nervous about the pain afterwards. Last time, it hurt for days/weeks. This time it is so much worse. I am glad to be taking muscle relaxers before and after. I think this will help a lot. They said over the phone I have to open at least double what I can actually open, and be able to hold it there for 30 min each side. They said that they will have to force it open, and to expect to have significant pain afterwards. I wish they had a way to do it without prying it open so far. They only have one size. I am very lucky to have such a great doctor. The surgeon does not treat your pain until after your surgery, so I am seeing my primary care doc for this. He was reluctant at first, but I had the surgeon call him to let him know that no one else is giving me medication. He is the only one. He knows I cannot drive, so he is very nice about not making me come in all the time. He just has my husband pick up my prescriptions. I am hoping that the MRI will show something drastic, and we can move the surgery up!! Wish me luck on Thursday. I will even get to bring my films home with me right after the MRI. I will have my husband drop them off with the surgeon on Friday. I will try to get on here and post after the MRI. If I don't feel too bad. If not, I will post as soon as I can. Thank you for your help. Have a great day.

Please give us an update!

Hello again! I had my MRI 2 weeks ago, and my doctor told me that I need to stay on the Percocet while I wait for my surgeon to get a chance to read the results. I have called the surgeons office a few times now, and the nurse and the doctor are still out because of her injury. They said they will get the results over to her when they can so she can read them. It was terrible pain after the MRI as expected. I am still recovering. I have been resting all week/weekend. It has been very bad. I had to increase my pain meds to 10mg of percocet at a time instead of the 5mg. I have been using flexeril at night as well as anti inflammatories around the clock. My doctor said there is nothing we can do execpt medicate me till the surgeon heals and can do the surgery. She can't even see me because she is still on her bedrest for her hip injury. I will try to call again today. I also got fired from my job last week, due to my extended medical leave and my insurance was cancelled. I suppose to stress of that did not help at all. Now I have to use Cobra to continue my insurance and it is VERY expensive. I have no source of income, so it's really hard. My husband wants me to pull our son out of daycare, but I just can't watch him all the time. I am laying in bed all day. We are trying to take out loans, and borrow money from family. My doctor keeps telling me to try to make my life as stress free as possible. Yeah right!! Thank you for asking for an update. I am so happy to have people who care about my situation. I get so sad sometimes! My poor husband is getting frustrated too. How can they not have a back up surgeon for a situation like this?? I know I don't want just anyone to do the surgery, but what the heck? I also recieved a call from Shands hospital letting me know they can "work me in" at the end of November, but only for a consult. Then I will have to wait another 4-6 weeks while they approve my insurance because it is out of network. I am so frustrated. Can't they see this is an emergency?? It is all based on what type of insurance you have and where you can go. I just don't know if I can physically/mentally make it another 6 weeks. The percocet are not working as well anymore, and I don't know what else we can try. I don't want to go up to anything stronger. My doctor is monitoring what I take, so he does not want to increase my doseage. I am just hurting so bad. I don't know what else to do. I hope to report back with good news sometime soon. Thank you all for your support. I hope you all are doing well. Have a great day.

I just had an idea. I'd suggest that you look for help from the local social services office. You can schedule an appointment with a social worker to target social services that you might be able to use during the gap time between diagnosis and treatment. They might also have information there about sliding scale clinics that can help you. Use these keywords in a search engine : "your county your state health department social services"

Thank you for that info. I just got off the phone with the nurse at my surgeons office and he said that my doc might not even be able to do my surgery in December! He said she is still recovering and that I need to seek out other docs to consult with in case she can't do it. He said she won't even know if she will be able to do the surgery until the week before it is scheduled. I am going to shand's later in November, but they will take awhile to get me in for surgery, so it looks like I am playing the waiting game again. I am so upset right now. I am in so much pain and no one will help me. I explained that I am out of work and need this surgery done asap. He said he will try to make it a priority and call shands to move me up, but is not sure they will be able to. My doctor also does not want me on Percocet for much longer, so they need to figure out something. I am so frustrated. I will look into the info you provided and let you know what I find. I will also post again when I speak to someone about moving up my consult date. Thanks again for all your help. I need it! Talk to you soon.

My primary care doctor called me yesterday to let me know that they don't want to keep me on pain meds any longer. They are sending me to a pain management doctor in the next week or two. I have concerns about this, as I know from past experience with pain mgt. docs, that they mostly do injections. I have been advised from my surgeon not to do any injections or manipulations to my jaw, as my condition just need surgery and medication. I spoke with the surgeons office the day before and he agreed with what my primary care doc had me on as far as meds, and he advised to keep up with that plan of action until the surgery. Then the next day, I get the call from my primary care, saying he does not feel comfortable keeping me on meds this long, even though I have already been taking vicoden for 3 months, and percocet for 1 month. I am confused. I am wondering if you all have had experience with pain mangt. docs and what types of treatment they offer. Do they usually only do injections? I totally trust my surgeon and her advise is no injections. But my primary care does not know "what to do for me at this point" and wants to send me somewhere else. I am worried and confused. I do not want to be in pain. Without pain meds, my pain is unbearable. Off the charts. I cannot deal with that again. I finally found a medicine that actually dulls my pain, and they are taking that away from me. I feel very upset by this. I feel like they don't care about me anymore. They have been great and I have done everything they recommend. My husband told me that they would do this. He said they will get you comfortable, and then realize that you will have a chance of being addicted and pull you off all your meds. I already had the "addiction" talk with all of my docs. We agreed that since my case can only be helped with surgery, that we would just deal with the dependancy issue later. They told me to remain stress free and relax, but how can I do that when I am in so much pain. I saw a pain mgt. doc before, and he did not believe in meds, just his hospital procedures that did nothing for me. They made my pain worse. I am so terrified of the pain. I was depressed and a bad mom and wife when I was not on the correct medication to help me. Now I am worried that I will have to wait the 2 or 3 months till my surgery with no help what so ever. I just wanted to know if anyone else has been in this situation and what did the pain specialist do for you? Did it help? Even if other injections had not helped? Will they still try other medications for you? Or do they just treat you like a junkie? I do NOT take pain meds to get "high", I never take more than needed. I have a real condition and I don't know why everyone is scared of treating me. I am young (25) and they always say " wow, you are too young to have this problem" and then "we really don't know what to do to help you besides surgery". I know it is because of my age, but if they would take the time to read my doctor notes and MRIs and prescription hx. they would know I do not abuse meds, and that I have a real condition. Sorry for the long rant! I am frustrated that they are taking away any relief I had. Maybe the pain mangt. doc will be ok, but I wanted to check with your experiences. I have read some bad things about them as well. I hope you can help me! Thanks so much.