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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 07-19-2007, 08:19 PM   #1
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ellenk HB User
Angry need help please

I am new to this site but from what I have read, I feel that I may be able to get support/help/ guidance, etc. I have been fighting TMJ for 5 years which seems short compared to some of the threads that I have read. My problems began when I had a "bad surgery". My jaws locked but I was in no pain. After what I thought was a lot of research, I had a surgeon unlock my jaws. I woke up in pain and have not been pain free since. To make a long story longer, I am now a patient of Dr. Gremillion in Gainesville and feel comfortable with him. I have had 1 surgery with Dr. Dolwick 4 years ago to remove both disc. I have tried various meds, botox and pressure point injections. None have worked and I am on a down hill course. Dr. Dolwick now recommends a total joint replacement on both sides and I do not know what to do. I am scared. I have 2 young children and a wonderful husband, I hate what I have put them through because of the pain. I have not eaten a solid food in over 2 months and the pain meds do not work. Guidance from someone who has been down this path would be greatly appreciated. I am scared to go through this surgery because it seems so extreme at the same time, I have no quality of life. I dont have a friend that I can chat with, I have lost patience with most of my friends and I hate dumping it all on my husband. I am lost and could use advice. Thank you in advance for any help. Ellen

Last edited by ellenk; 07-20-2007 at 05:01 AM. Reason: typos!

 
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Old 07-20-2007, 04:36 PM   #2
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Re: need help please

Ellen,

So sorry that you are having to go through all of this. I have had TMJ for about 15 years now, so I understand completely how you are feeling.
Was the surgery to remove your disc's your first surgery because if so it was a bit drastic. i've had lots of surgery including a failed partial and then failed complete replacement so I really do understand how you are feeling with living in pain and not eating meals and loosing patience with friends and family, it's tough but somehow we always find the strength to continue, your children will amaze you with how resilient they are to all of this, my daughter is 13 now but has lived with this for so long that she just accepts that mum is in pain and that she can't do what a lot of other mum's do.
I'm going to have another replacement with a Concepts custom made pure Titanium joint any time now because it's what's best for me, yes i will still have pain but not to the extent that it is now so for me the risk is worth it.
It's a difficult decision to make but at the end of the day you have to weigh up what is going to be best for you and your family. can you live in this pain for ever or is it worth going ahead with the replacements, so that you can get your life back and start having fun again and eating proper meals. a friend of mine had her disc removed a while ago and she is now starting the process to have Replacements as her life is just a shell of what it was and she wants to have fun with her 4 year old again.
Get a second opinion, or even a third or forth do some research and reach the decision that is best for you.
I hope that you reach the decision that is best for you and your family to get you out of the pain that you are in.
take care,
lorraine

Last edited by lorratt; 07-20-2007 at 04:37 PM.

 
Old 07-21-2007, 07:03 AM   #3
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Re: need help please

Lorraine,
Thank you so much for taking the time to reply. 15 years, wow. My heart feels for you. Do you mind if I ask why you have to have the joint replacement done for a second time? What happenend with the first?

 
Old 07-21-2007, 07:07 AM   #4
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Re: need help please

Lorraine,
Sorry I hit the wrong key before I finished. I just wanted to answer your question regarding my first surgery. I had locked for some reason. I had no pain but could not open. I did what I thought was a great deal of research and found the best person in our area. He did authoscopic (sp?) to open the joint. When I woke up I had pain and have had it since. When he opened the joint he made mince meat of my discs and that is why I had to have them removed.

Thank you again for taking the time to write. I truly appreciate it. Just to know that you are not alone makes the process better! Sometimes I think that no one gets it, not even the drs.

I wish you all the best with your surgery ~when will you have it.
Ellen

 
Old 07-21-2007, 02:06 PM   #5
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Re: need help please

Ellen,

The replacement joint had to be removed as I had a severe infection that would not clear under any circumstances it did'nt matter what antibiotics they tried it would not go, so it had to be remove as i was becoming quite unwell with liver and kidney failure, and with removing the joints they could stop the antibiotics and allowed my organs to recover.
Anyway further down the line my consultant attended a conference in the US and it was suggested to send me for allergy tests which I had an it turned out that i was allergic to all the metals used in replacement joints so no matter what joint I had replaced the outcome would have been the same, anyway I'm not allergic to Titanium so my new joint is made from pure titanium and I'm going to have surgery any time now, just got to wait for a date that is convinient to my Surgeon and myself.
Lorraine

 
Old 07-22-2007, 07:00 AM   #6
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ellenk HB User
Re: need help please

Lorraine,
You have been through so much. Thankfully your dr. went to that conference. When they removed the joints ~ what do you have in now? How old were your children when you went through the replacement surgery the first time? I remember that you said that you have a 13 year old. Is that right? Did TMJ concepts make the joint that they are putting in next? I am a wealth of questions and if you do not feel up to answering them I do understand. My fingers are crossed for your surgery and I will keep you in my thoughts! All the best, Ellen

 
Old 07-22-2007, 09:02 AM   #7
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Re: need help please

Ellen,
No I don't have anything in at the moment, scar tissue has built up and acts like a joint. My daughter was 1 the first time I ever had surgery she has seen me have lots over the years then she was 10 when I had the replacement put in. She is now waiting with a list of questions that she would like to ask my surgeon before I have the surgery. It was suggested that this might be a good idea to help her understand more about whats going on and it also includes her in the surgery, as she will know how best to help when I come home. Yes Concepts have made the joint that they are putting in next. I understand that they are not for everybody but none of the other companies could help.
Lorraine

Last edited by lorratt; 07-22-2007 at 09:04 AM.

 
Old 07-22-2007, 03:39 PM   #8
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Re: need help please

Lorraine, it sounds like you have been through so much. Are you able to eat any solids with only scar tissue? Do you have any movement? What a wonderful idea to involve your daughter. My son is 9 and my daughter is 6. If I have the replacement surgery I have to travel 4 hours from home. This is where I go for both my surgeon and my facial pain doctor. My children are used to me traveling there but it is a mystery to them what happens. Thank you for the idea! It is my understanding that TMJ Concepts is the only company that makes a custom joint. Did you have another choice your first time around? Thank you so much for taking the time to answer my questions. You are such a blessing for me right now. Please keep me posted as to your procedure. It just sounds like you have been through so much. How do you keep what sounds like such a wonderful outlook! Thank you and I hope that you are having a good day!! Ellen

 
Old 07-23-2007, 01:11 AM   #9
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Re: need help please

Ellen,
No I don't eat anything solid, but you get used to it. I have to travel as well but not four hours, but I know people from another board who travel hours and further. I think it's important to involve the children, it's certinely relaxed my daughter about the whole thing. I was told that it's important to involve the children no matter how young they are, and I feel that it has been better for my daughter to write down her own questions and ask them herself so that she is getting involved and not just hearing what i choose to tell her.
I am in contact with another lady and she has Custom made Christianson Joints, its not common for them to do it but they can do it, but unfortunately they could not help me this time. I think you go with what joint your surgeon prefers and I know mine prefers the Christianson.
You have to remain positive, otherwise I would have curled up in a ball and died by this point, I know that at some point soon I will be relitivley pain free not completely pain free but I will be at the point where I will be able to function like any other human being, I will be able to eat properly again and will be able to get off, of the Morphine which is something that i am looking forward to. So remaining positive for my daughter because of all the things that we will be able to do again keeps me going.

 
Old 07-23-2007, 04:53 AM   #10
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Re: need help please

Lorraine,
What a wonderful attitude. Your daughter is very lucky! I leave today to visit my facial pain dr. (not surgeon) so that I can ask him what he thinks about the total joint replacement. I also would like him to explain my CAT scan ~ the surgeon tried but because the hospital is a teaching hospital he had his group of dr's in training around him and my husband and I were in such shock because we did not realize that a replacement was even an option I asked my dr to explain it to me in basic terms. I am looking forward to today. I am driving back after the apt. because I hate being away from my kids. Over protective Mom! I am going to ask if they can come to one of the apts and meet my drs so it is not such a scary event for them. THANK YOU for the idea.
I also eat only liquids, or should we say drink? Do you have any good recipes? I live off of fruit smoothies ~ someday I think that I am going to look like a peach!!!
When is your next apt? Do you know what your recovery will be? How long in the hospital? How long until you can kiss the morphine good by?
I am on morphine also but I just started it so they are going to raise the dose so that I get relief from it. Right now I am in the "getting used to" phase if there is such a thing! Have they reccomended Methanone for you? For some reason the thought of it scares me.
Okay, I think that I hit my limit with questions for this email! I hope that you have a GOOD day!
All the best and I am appreciative of your time it really helps!,
Ellen

 
Old 07-23-2007, 09:39 AM   #11
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Re: need help please

Good Luck Hope that all goes well and that you get some answers. Let me know how it goes.
Take care,
Lorraine

 
Old 07-24-2007, 05:27 AM   #12
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Re: need help please

Hi Lorraine,
I am back ~ lets just say I understand my cat scan now but they added more options than just the total TMJ replacement. But it seems with every option there is a negative or two.
One was to place fat cells from my belly (I could use that even without eating: ) and put them in the jaw. Hoping that would provide relief. Problem is, there is no way to tell if it will provide any relief and if it does for how long. Of course ~ how many times have you heard that? Then if it works and I get relief for a time, it will still make the odds of a total replacement giving relief less. If it doesn't work ~ it will make the odds of a total replacement working less.
The other option was to go in and round of the bone as best as he can for a short term relief - if it would give any.
As you know, the more surgies that you have the less the odds are that the total TMJ will work.
So that is what I am left to think about. The Dr. feels that no matter what option I choose at some point I will need the replacement.
All that I am sure you have heard! I am debating wether or not too see the Dr. that performs the fat surgery just to hear what he has to say. The part that I dont like is he will paint a picture of beauty that he can help and I will feel great.
I have trouble filtering through it all because I dont trust my judgement. Judgement is what got me into this problem in the first place. I trusted my self the first go around and ended up with this problem.
Oh well, I get to go and fix breakfast for my children today ~ that is a good thing!!!
When do you schedule your surgery?? Is your daughter on vacation from school?
Hope that you have a good and Pain free day! Thanks for always listening and any advice is appreciated. I just wish that I could do the same for you ~ you just seem to have a few years of pain on me : (
All the best,
Ellen

 
Old 07-24-2007, 03:04 PM   #13
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Re: need help please

Ellen,
When you are presented with all of that information at once it is very difficult to digest. Please don't do anything until you have digested it all first then weigh up your options.
I do know somebody that went with the fat graphs if you want me to tell you about it let me know.
Your right in what you say about the more surgeries you have the more difficult it becomes, but don't rush into replacements, weigh everything up first.
I know that, that is easier said than done when your in so much pain and you just want it to stop so that you can get your life back and have fun with the children again.
Do your research and lots of it and even get a second or even third opinion, you have nothing to loose by doing this but you will learn an awful lot.
Yes my daughter is on school holidays, six weeks off. I just wish that the weather would improve you cant do very much when it is raining all of the time.
Still have to arrange my date for surgery, it would be better to wait until my daughter goes back to school but then I'm not sure that i can wait that long, will have to see.
I'm always willing to help if i can even if it's just to reassure you.
take care and talk to you again soon.
Lorraine

 
Old 07-26-2007, 06:36 AM   #14
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ellenk HB User
Re: need help please

Hi Lorraine,

Thank you so much for the reassuring words ~ your advise is always appreciated and YES if you have time I would love to hear about the fat graphs. It sounds tempting based solely on the fact that it is less evasive and it could buy me time. But, like you mentioned, I need to do research.

What grade will your daughter start in the fall? My son starts 3rd and my daughter starts kindergarten. It goes so fast. They start back around Aug 22.

I hope that you do not have to wait on your surgery. I can only imagine the amount of pain that you must be in ~ as well grounded as your daughter seems I would think that she would be excited for you to have your surgery and start the road to a pain free life! Like you said ~ it is easy for me to say.....

Hope you have a great day and the rain stops. Isn't August your "rainey" time of year? Is it cold too?

All the best ~ and with gratitude,
Ellen

 
Old 08-02-2007, 03:59 PM   #15
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Re: need help please

Fat graft like most fat in your body will be absorbed by 3 to 5 months. And then what are you left with. You will have 2 scars. One from your open joint surgery and one from the graft site. which is usually either taken from your belly, butt or thigh.
My friend that had this done is now having a Concept Joint replacement. She did have a few months free from the fat graph but then the pain was back with gusto.
I hope that your doing okay and good luck with your decision.
Lorraine

 
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