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11 years of TMJ, So much pain and no help

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Old 01-20-2012, 10:49 PM   #1
Join Date: Jan 2012
Location: council bluffs iwa
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JiminIowa HB User
11 years of TMJ, So much pain and no help

Hi, my name is Jim, i am 30 and live in iowa, i am new to the boards and felt i would share my story, bare with me as there will be many typo's in my post since as i type my eyes are watering from jaw, head, neck, ear and eye pain.

It all started about 11 years ago a few months after i was in a car accident with a friend. I started getting pains in the right side of my face near my ear and also the right side of the top of my head. My family doctor recomended an ear nose and throat doctor. From there i ended up getting a timpanyl mastoidectomy(clean out my mastoid behid ear) As im sure you had guest... it did nothing for me, and even with an mri the doctor said nothing about tmj. After that i have seen probably 20 different doctors ranging from migraine/headache specialist to chiropractors, in which nothing worked. So over the years of my symptoms growing worse they became easier to notice where the pains were located, i stumbled across a tmj article and wow that was me...... At this point everything from my shoulders up hurts and lower and mid back pain as well.

To the tmj specialist.... Now the search for a tmj specialist in omaha.... I found a doctor that specializes in tmj so i setup an appointment. I went to the appointment and man the place was gorgeous, it was a tmj sufferers dream doctor, very quiet, dimly lit, short wait, and even coffee and every drink imaginable in the lounge for patients. So the appointment starts with different gadgets measuring my range of motion of my head, neck and jaw then went to bite percentages and then measuring my posture on a board and a few other doodads.... The doctor poked and prodded on me in different areas, HE KNEW EXACTLY WHERE I WOULD HURT BEFORE HE EVEN PRODDED THE SENSITIVE AREA! He knew exactly what was wrong, i have severe tmj with both disks being displaced. Before i left they said they have to check with my insurance before i can schedule another appointment for my x-rays and treatment options. So i left and had tears running down my face(im a grown man) i was so happy somebody finally understood what i was going through, to this day i have not talked to anybody in my life expieriencing the same thing that im going through.

DUH DUH DUH..... the horrible news.....

So i get a call from the doc's office, and they inform me that my insurance will not give them a preapproval for my procedures in my next appointment and i would have to pay $1632 up front..... and thats just for the xrays and then another appointment would have to be made for treatment which would be costly for an appliance etc.....

So basically im screwed, i cant afford the doctor since recently getting married and then losing our house in the missouri river flood last year and i just switched jobs and dissapointingly the place has the same insurance as my last employer..... Nobody in my family will help at all, me and my wifes credit is screwed since the flood which rules out the credit they offer at the doctors office(care credit rejected my application) . So basically i am stuck with this for a good remainder of my life.... with no light at the end of the tunnel.,

Tmj has basically ruined my 20's, im a totally different person, im irratable, cant stand going anywhere, the grocery store is an absolute nightmare, being around people i dont know gives my anxiety...... It just keeps getting worse and worse for me, i dont know how much more of this i can take. My regular doctor treats my like a druggy when i went there a couple weeks ago asking for pain meds for my tmj since i cant afford the treatment..... did he give me anything?? NOPE..... Gave me recomendations... eat soft food...bla bla bla.... ive tried everything under the sun and nothing works for me.....

My family, my wife, my friends..... nobody understands the pain i go through.... i say my head hurts... they say.... "your head always hurts".... like its my --- ---- fault..... Nobody understands...... Nobody understands....

I guess i will just suffer for the rest of my days with this terrible dissorder.... everyday all i do is think about the things i could be doing with my life if i didnt have tmj.... lifes going by quick and sometimes i think its just too late for me.......

Thank you for taking your time reading my story, best of luck with everybody that is suffering from this devil dissorder. Take care.

Last edited by Administrator; 03-11-2012 at 10:25 PM.

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Old 01-21-2012, 07:26 AM   #2
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Join Date: Jan 2012
Location: california
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shiftyjaw HB User
Re: 11 years of TMJ, So much pain and no help

Hello jiminiowa,
I'm also new here. Sounds like you have lots of issues going for you and some bad luck too. I sure hope you can get it resolved and I too wish some of this stuff was covered under medical insurance.

I have a bite issue and in 7 years, my teeth have shifted tremendously although I have no pain which I am thankful for. You can read my posts.

Good luck to you.

Last edited by Administrator; 03-11-2012 at 10:28 PM.

Old 01-22-2012, 05:18 PM   #3
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Re: 11 years of TMJ, So much pain and no help

Sorry you are in such pain and for so long. Having had this for many years, I understand, but luckily for me I am older, so it didn't impact me at a younger age.

The cost for treatment is outrageous. I went for a consultation a few years ago and the first visit with a tomograph of my head was 250 up front and another 450 after that. The total cost of treatment for me would be $6000. Needless to say, I didnt' have it. They had a payment plan and credit plan but I still couldnt do it.

Right now I am in alot of pain. Mine is also an arthritis issue, which means it will only get worse. I watch what I eat. Dont' eat much meat, ( too hard to chew). Haven't had a burger on a roll in years, rarely eat sandwiches or bagels. Crunchy foods can actually be easier than chewy ones, weird I know. I use warm compresses when possible. Being on the phone is very difficult, so I try to limit the use or put it on speaker phone.

I hope some of these suggestions help you.
Good luck.

Old 01-22-2012, 05:37 PM   #4
Join Date: Jan 2012
Location: council bluffs iwa
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JiminIowa HB User
Re: 11 years of TMJ, So much pain and no help

I do watch what I eat but it seams anything involving a chewing motion makes my head hurt worse, every time we got out to dinner with friends I smash down shots and drinks so after we eat I can still manage to carry on a conversation after eating. I'm not a drinker though and I might drink 1 time a month..... Like mentioned above talking on the phone sucks and I do use speaker phone but usually I just text people.

Last edited by Administrator; 03-11-2012 at 10:29 PM.

Old 01-22-2012, 07:04 PM   #5
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Location: lisbon nh
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Grammie02 HB User
Re: 11 years of TMJ, So much pain and no help

Try a mouth guard if u can't afford to go back to the drs its almost like a retainer which the dr was probably going to make u.
I had the same pain and did the same thing till the chiropractor asked me if i have ever seen an orthodontist, I went to the orthodontist and he did x rays made me a retainer which I wear 24/7. No more headaches face numbness etc.

Old 01-23-2012, 05:58 PM   #6
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Location: New Madrid Mo
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kporter59 HB User
Re: 11 years of TMJ, So much pain and no help


The only thing I can say, is that you are not alone. There are many TMJ ppl that can not get the proper treatment due to health care cost and no insurance coverage. It is terrible and I wish I had the answer. Myself have been out so much $$$$, and can't continue my treat. If you search the internet you will find some teach self treatments, to help reduce your stress and pain. Does your state offer any state insurance programs, might what to check that out. I understand your pain and the problems you have to deal with. You look fine on the outside, but hurt inside. I think everyone on this board is looking for a cure and help. TMJ treatment is so expensive and it does not help everyone-this is not one size fits all...don't leave the board, stay with us!!!

Last edited by Administrator; 03-11-2012 at 10:31 PM.

Old 02-07-2012, 06:54 AM   #7
Join Date: Feb 2012
Location: Nashville, TN, US
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tacy HB User
Re: 11 years of TMJ, So much pain and no help

Hi Jim,

My sympathies for you. It makes me feel the TMJD I have is minor. I was told by the doc it is moderately severe.

I gave up on asking for pain meds. Now I order tramadol (generic Ultram) online. My dentist gives me valium; I have kept it down to 10mg per day most of the time.

The docs are so scared to give out medication. If they were in the kind of pain you describe they would be writing prescriptions for themselves. I know it is frustrating.

Prolotherapy helped for a while. If the pain gets real bad I take a hydrocodone.

My path for healing, right now, looks like improving posture, lowering stress, etc... I am seeing a craniosacral therapist - one of the first people I have met that understands we need to go slow.

Also, I am learning trigger point therapy and use some accupressure.

I hope this helps. It may be that I have a slight addiction. But I can't function otherwise. There is a mortgage to pay.

My goal is to tapper off the medication as I get better. At the same time, over the past four years I have gotten worse.

My Best to All of You!

Old 02-21-2012, 08:14 AM   #8
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dwlhart HB User
Re: 11 years of TMJ, So much pain and no help

I feel for you. I've suffered from TMJD pain off and on for 13 years now. Mine started when I was 15. I got heat stroke at the beach, passed out and hit a fence post on the way down. Gave me trauma to my left TMJ and whiplash. It wasn't properly treated then. I lived in West Virginia at the time and there were no specialists. I finally hooked up with a physical therapist who helped ease my pain and symptoms. He gave me jaw exercises that strengthened my jaw and the pain eased, although I still had to watch what I ate. The pain returned in college. It presented as leg and hip pain and it took me 2 years and I don't know how many doctors to finally figure out that TMJD was causing all the pain I was in. It spread from leg pain to full body pain. At one point the doctors thought I had one leg shorter than the other which was causing the pain. Talk about them being on the wrong track! A new oral surgeon made me a new splint and I did 6 more months of physical therapy. That brought the pain down to a manageable level, but it never went away. I had to stretch or do yoga for an hour or two every day in college and after just to keep the pain at bay and my body as loose as possible.

Three years ago, the splint stopped working and the pain spiked incredibly high. Now there isn't a part of my body that doesn't hurt. I'm tolerant to most pain meds now and only a couple work for me. I'm trying all sorts of things to get better. Just finished 2 years of braces. My second time in braces. Now I'm in a mouthpiece I wear 24/7 and a splint I add to it at night. I still work 40 hours a week at my job because I need the money and health insurance, but everyone tells me I should quit and focus on my health. It takes everything I have to get through the work day. I get home and have enough energy left to feed myself, my husband and my pets and then I'm done. I crash in bed with ice packs and hot pads and watch tv until I fall asleep. Although I can't stay asleep without medicinal help. The pain wakes me up.

Like you, I feel isolated by my pain. Only my closest friends and relatives know the true extent of the pain I'm in. I wear a mask at work and hide how I feel as much as I can. I should've been an actress. I can't commit to plans to go out to dinner with friends because I can't know in advance how I'll feel that night. I even feel cut off from my husband. He's a nurse and wants to fix me but can't so it builds a wall of frustration between us. He asks every day how I feel and I say I ache or I hurt or whatever but he doesn't really know what it's like. No one understands chronic pain unless they live with it too. My grandmother introduced me to her friend who has fought chronic pain for years. I ended up in tears talking to her because she got it. She knew what I was going through. Only she's in her 60s and I'm only 28. My life is on hold due to pain. I can't start a family because of the meds I'm on. I don't travel much because it makes the pain worse. I just go to work, get through the day, and then crash. The weekends are for recharging, not doing all the odds and ends around the house I wish I could do.

It's nice to talk with someone who feels as I feel and hurts all over. Hang in there. That's all we can do. That and keep working to make ourselves feel better. It's a daily fight for me. I'm always researching new treatment options. Right now, I'm working with a therapist who specializes in teaching methods to manage pain and it's helping some so far. Acupuncture helps me a lot and there are 2 community clinics here that will treat you for as much as you can pay. I pay $15 a session which is a great help with all the medical bills I have.

Luck to us both in getting through this tough time.

Old 02-29-2012, 11:45 AM   #9
Join Date: Feb 2012
Location: Florida
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JayneMim HB User
Re: 11 years of TMJ, So much pain and no help

Maybe a cranial osteopath may help...

Old 02-29-2012, 11:46 AM   #10
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dwlhart HB User
Re: 11 years of TMJ, So much pain and no help

A good cranial facial massage therapist can make a big difference too.

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