I was wondering how you are doing, and if you have made a decision about your joint replacement? Do you know who is going to do the replacement for you yet. I have only heard good things about the TMJ Concepts Joints. I wondered what you will be having placed.
Hi, there. I haven't been on the board much lately . I know, bad, bad, bad.
Well, here's the scoop.
I have decided upon the total joint replacement, the pain is too exhausting for me not to. I'm having problems doing my job...and, I know the powers that be are not happy about that.
My doctor sent off a letter to Aetna for approval last month....which they 'claim' they never got....except the doctor's office faxed me a copy of the letter and the certified return receipt notice proving they got it on 5/13.
I filed a grievance with my ins. company, with my states' ins. commissioner, and with my payroll company...thinking about having my attorney file a bad faith lawsuit. My whole problem is that their negligence just tacked on another 45-50 days with no surgery . (because it takes that long for it to be approved)
Other than that, I am trying to hang in there. I sleep once a week these days. My condyles hurt so-o much. I pray, alot. I pray I can make it another 4 months with no surgery....job wise, pain wise, eh, the whole enchilada. Eh, I think I would just like one night of peace at this moment. Just a night where I pamper myself and just try to relax. I broke down at work last week...Just started crying.
I do not believe most people around me understand just how exhausting this pain is. But, I am trying to remain as optimistic as possible...Just trying to hold on to faith....I know, at least, that my pre-cert notice has been received...so, I am crossing my fingers.
I know that having this surgery, the TMJ concepts total joint replacement, is a HUGE risk. But, I look at what I have done. It hasn't worked. I look at what I am doing. It isn't working. And, I believe my only option is this surgery.
Wow, I did not realize you were working right now. I can't imagine how you are managing that on top of everything else. I would be crazy. No wonder you started crying at work; I am sure I would do the same.
I can understand you deciding to take the risk. I think it comes to that point some times.
I am still looking into second opinion on having my one side redone since that arthroplasty did not work. I am just thinking of having it redone since the surgeon is going to charge me half price. I think he should do it for free, but he isn't going to do that. This is the only profession I know of where you end up paying them to fix their mistakes.
Please keep in touch and let me know how you do with your surgery.
Don'tcha just love doctors and ins. companies. I am on the phone with mine as we speak....ready to have a cow. Again, they are changing their minds. Joy....trying to get an attorney to file an ERISA lawsuit against them.
Wow. how are you feeling? How do you do throughout the day?
The insurance company is changing their minds about letting you have the surgery? Is that what you are saying? I was thinking about changing to Aetna insurance or Blue Cross/Blue Shield. Let me know how they handle your case. My husband may be able to find us another policy with another company. I have been with my last insurance company ten years, but I am afraid eventually I will have to have my disc taken out and then later joint replacements. I know this problem is not going to go away.
I do okay Meditation due to pain managment from my neurologist. He is also a physical rehab doctor. I am taking Neurontin and Keppra for neurological pain. They are anticonvulsants. I also take Oxycontin a small dose daily three times a day. I started it a few months ago after being in pain for almost two years. I just couldn't take it anymore. It was a huge decision for me.
I try to keep as busy as I can working around the house and in my yard this summer. I don't have any friends left except friends online with tmj. It is sad. My sister recently bailed on me. Oh well.
I would like to get fixed up and possibily get a part-time job. I feel like I need to get out of the house a bit more.
Please keep in touch and let me know how you are doing. I am interested in hearing how everything goes for you.
I will give you a warning about Aetna. From what others have told me and from what I face, I can say they are one of the worst in getting TMJ treatment approved.
When I got this insurance from work, I had no clue that I would need surgery. I wouldn't have picked them...if I had a crystal ball, as the phrase goes.
I have filed 2 complaints and a formal grievance against them. I also have an appt. with an attorney next week, to hopefully file an ERISA (law which governs health ins) lawsuit. I truly believe they are engaging in bad faith business practices.
Finally, though, one good thing....The precert is in...the letter for approval is in...so, at least the ball is rolling...My issue is that Aetna's negligence will cause another 45-50 days until the surgery is hopefully approved...though there is no guarantee that it will...and, then the wonderful world of appeal occurs.
I am sorry to hear about your 'friends' and your sister. I, too, find friends and family dropping like flies. They do not understand and I do not think they really get how bad the pain is. I can say this. Do I need the morphine. Yes. Do I want it. No. We both know the side effects can be downright horrid.....
I've lost too many friends to count. My family. Well, loooong story. But, suffice to say...none of them ask me how I am, call me, ask me if I need anything. I refuse to call because who says that I should always pick up the phone..especially being in this pain.
How is the Neurotin working for you? It was like a sugar pill for me. Does it help?
Thanks for the heads up on Aetna. A gal on another board had mentioned that she was having TMJ Concepts put in through Aetna. I will take a harder look at Blue Shield and Cigna. Right now I have Principal, and it covers absolutely nothing.
The Neurontin worked a little, but adding the Keppra with it worked better. I wish it would of worked well enough not to add the Oxycontin. I dislike the side effects. I have a hard time remembering if I took my medication or not. It seems like I miss little details, which is not like me at all. I never had a problem before the medication.
Yes, the friends do go away. I have heard very similar stories everywhere I look for information. It is not you but the situation. I have talked to several people, and we all have the same story. People just do not get it when you are in pain. If I ever get out of this situation I plan to stay around and help others find their way through this maze.
My mom continues to call me, but she does not ask about my pain level. I have some friends from the boards and that is about it. I recently had to start therapy due to all the associated problems of pain. It really plays havic on your life.
I can only imagine what it is like to take Oxycontin. I've never been on it.
But, with what the pain does, in totality...I can see it.
Look at us. You're up pretty late, and so am I.
I try to sleep. Usually, I get about an hour a night. My doctor (oral surgeon) gave me Valium. It interacts strongly with the Duragesic patch...where I sleepfor about 12-15 hours. So, I really don't take it...having to drive and work.
You know, I've thought a lot about something you said...about helping others with this.
A while ago, I began writing an autobiographical book about my life. Life has seemed to hand a lot out to me...and, many around me are totally shocked that I have 'flourished' (ok, right now I am questioning that). But, anyway, one chapter of it was how I dealt with the TMJ the first time...when I was a teen.
I've written alot about it....probably because that is how I best communicate. One of the things that suprised me, and still does, is other's reactions to it. And, you are right, most of us share the common thread of manuevering through this maze essentially alone.
It still shocks me how little the general public knows about TMJ and what it does to every single aspect of our lives. For myself, I used to be this fiercely independent, strong woman who was determined to be a success.
When I first went through this, people really thought I would not graduate high school, much less get three college degrees.
Anyway, I would definitely like to continue my book. Because, I truly believe that the one single thing people need to learn from this is compassion. This isn't a dental problem, though it may have those issues. It is a medical issue that we all know, too well, that wreaks havic through our lives like a wrecking ball.
My older brother is a doctor. About a few months ago, I asked him to help me with researching the total joint replacement. His only comment was, "It's not my area". Basically, sorry, not going to help you. I didn't ask for money...even though ...well, long story....
My twin, well, he is a newlywed who hasn't spoken to me since his wedding in Nov. If I needed advice or help of anykind....chances are he'd hide under a rock like an ostrich.
My mom calls, once in a blue moon. She has her own health issues. She has offered help, as much as she can..BUT, I just can not accept it.....for many reasons. But, the last conversation we had, her tone was derogatory...I've never felt 'supported' by her.
Thankfully, when I go through the surgery (crossing my fingers and praying to the Lord), I know there are a couple of people who will be there for me. They are there for me, as much as they can...because, think of it, there really isn't a textbook on how to help those you love with TMJ. (hmm. another thought)
Anyway, after all of this, a friend of mine told me I need to meet more people. to go out. to have fun. I really do not know if I am depressed; but, I know this. How can a person have fun being in severe pain? worrying about the financial burden TMJ causes? worrying about surgery? worrying about losing my job, my home? You know, the whole enchilada?? For me, I just can not do it, anymore.
I just hope for peace, for all of us.....even if its' just one night
Hope you have a restful night. ((hug))
Last edited by meditation; 06-19-2005 at 12:56 AM.
So you have decided to go with the TMJ Concepts? Please let me know when you get scheduled. Have you been on contact with Dave? You can read my last post to Tandy, but if I HAD to do it all over again ...I would. Everyone is differant and the ONLY thing I can tell you for my own experiance is....everything takes time. I know another who had the concepts put in about three months before me and about five months after the implants were put in her pain level dropped off big time...it took me almost 17 months then I woke up one morning and it was like everything settled in, went in place and my pain was almost non existant. The BIGGEST thing I had to deal with After healing from the surgery, even tho I noticed it right after the surgery was getting use to having something in my face. I went four years with nothing on my right side and very little on my left so the "fullness feeling" in my head was a little overwhelming in the begining. I remember the first time I bent over to tie my shoes and felt like I was going to topple over. I feeling I am doing very well with just the right implant and going jointless on the left. My pain level is next to nothing, which after being in such uncontrolable pain, I can live with this. A few of the tings you said to Micheel are so very true. I know I am lucky and my husband TRIES to understand BUT UNTIL you stand in our shoes there is no REAL understanding. I started keeping a journal when I was 16 years old, I am now 34 and have EVERY book I have ever wrote in so when my TMJ started I was able to go back and begin documenting it. I have started my story or life with TMJ and written down everything and every way it has affected me, my family, my life in general. At times putting it on paper helps me feel like I am explaining it to someone who understands what I am going through. ME! I know where you are coming from regarding losing everything you have worked for. We almost lost our home, car and truck because I could no longer work and SSD informed TMJ was "not a disabling condition" yeah right, I asked them to come live with me for a week and see if they could hang!! For some reason no one ever showed up???? My husband told the guy at the SSD office he would lock me in a room with him and NOT give me any pain medication for 48 hours and see how long the guy at the SSD office could stand it with me. All the ADDED stress only ends up making your Pain worse and at times everything seems hopeless. But it will get better. Some how, some way. We have all be brought together for a reason. I wish you the BEST with this and please know I am here for support should you need it. It is very nice to be able to chew again. Now, if only there was a way to do it without gaining weight!!!!! Take Care!
Yes, I have decided to go through with it. Dave and Eric, at Total Concepts, are awesome. Dave spend a good amount of time of the phone with me....to answer questions and to listen to me vent.
I am still awaiting ins. approval. My ins. company lost the paperwork, which will cost me an additional 45-50 day to even get it pre-certed. Joy. I've filed grievances and complaints...have heard nothing back. I tried filing an ERISA lawsuit and was told by the atty. that I didn't have the money to pay for it.
I am praying, daily, this works out. I am close to losing my apartment. Close to bankcruptcy. I've been to family for help...Guess what their answer was? No.
I worry about copays and deductibles. You know, the whole enchilada...beyond, not being able to work for approx. 3 months once I have the surgery. I am a college professor and was told I needed more time to heal....Plus, my classes run monthly..so, I am unable to take off in the middle of the month.
That sounds stupid to worry about the money situation, considering the pain level...I am completely drained and exhausted. I've heard people say it has taken them a year to even get the surgery scheduled....God, I pray it doesn't take that long.
So, I do more research. I read and read and read. Hoping that I make the right decision.
All you can do is make the best decision that you can with the information that you have.
I am so sorry that your family is not helping you out. I guess there is no way you can move in temporarily with anyone until your health gets in better shape? I know it is not optimum to live with someone else, but it might really take the pressure off you.
My family is bad, but I do know they would let me move in with them if I had to do so. They don't have a great house, but it has running water, central heat and air. I could live there for free and eat. They couldn't offer any money.
If it helps I have only heard good things about the Concept Joints. Recently, I asked my OS surgical nurse about the Concept Joints, and she told me they have a solid track record. They are only what my OS puts in right now.
Keep us posted on what happens with your situation. I pray you get a break REAL soon.
Hang in there!!!! You have a lot of support behind you. Just remember to try and stay positive. When you have the implants put in you will have to heal and allow your body to adjust to them and it takes A LOT of mental and emotional strength so hang in there! It seems we have to fight for everything so just do not give up. In my case, yes my pain level did drop off to next to nothing after awhile and I pray you will have a sucessful surgery. Dave, Greg and Eric are WONDERFUL!!!! Greg came to my last surgery in March and went in the OR with me and watched my surgery! They really do want to help us and they have tried to answer EVERY question I have thrown at them. PLEASE just try to stay strong and if I can help you in any way PLEASE DO NOT HESITATE TO ASK!!!!