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Old 09-01-2003, 05:56 PM   #1
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Cymy Sue HB User
Lightbulb Cheryl.......Mike's Tinnitus

Hi Cheryl,

I was just reading the post about the tens units. I knew Mike was suffering with Tinnitus, but I didn't realize it was so bad for him.

I know you've spent a ton of money already, but if you haven't checked into the Jastreboff Tinnitus Retraining Therapy, I thought you might be interested.

I started it almost 2 years ago and it kept me sane.
The splint has now done away with most of the noise, but before that, the TRT was working.

It trains you or your brain not to listen to the noise or let it bother you. The theory is complicated, but it does work for most people. It's done with small ear pieces, you can barely see, that generate white noise. I'm sure Mike would not want to wear them out, but he could get the required time in at home. They want you to wear them 6-8 hours a day.

There are very few Audiolgists trained in this therapy, but there is one in your state.

Insurance will not pay for this usually. I was charged $1800.00. This is for the ear pieces, all visits and any repairs for 1 year.

Of all the TMJD symtoms, pain and problems, the Tinnitus was one of the worst I experienced.

Before the splint helped with it, I had gotten to a point that it did not make me crazy. I was learning to deal with it.

I just thought if his Tinnitus does not get better, this might be something to check into. It does work.

Also, I found sleeping with "White Noise" on very low, helped, and this is quite a bit less expensive.

Take Care,
Cymy Sue

 
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Old 09-02-2003, 09:41 AM   #2
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CherylLynn24 HB UserCherylLynn24 HB User
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Cymy Sue,

Thank you for bringing this to my attention. I've never heard of the Jastreboff Tinnitus Retraining Therapy but am interested. After reading your post, I did alittle reading about it, (it sounds complex) I will read more this evening. You mentioned that there is an Audiologist in my State that is trained in this type of therapy. How would I go about finding out who this is or do you know?


As always Cymy Sue, Thank You for passing on your thoughts to me, they're always welcome and appreciated. I hope you're doing well.

Take Care,
Cheryl

Last edited by CherylLynn24; 11-03-2003 at 07:47 AM.

 
Old 09-02-2003, 12:32 PM   #3
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Cymy Sue HB User
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Hi Cheryl,

You're in Ohio, right? If I'm mistaken , let me know.
I'm not sure the site is within guidelines to post.
As I said, there are very few trained for this therapy and many states don't even have anyone. I was fortunate that there was one in my state within driving distance.
The Theory and training is credited to Dr. Jastreboff and Dr. Hazell. The therapists have to be members of the Tinnitus Retraining Therapy Assoc. and be trained and quailified to do this. The lady I see is a Doctor of Audiology. I don't know if they all are.
The lady listed in Ohio is Debra Abel, in Alliance.

If that's a long way from you, once you get started and get the ear pieces or maskers, you only have to check in about every 3 months, unless you have a problem.

If I'm confused about the state, let me know.
I'll look at some of the info again and see if it's within guidelines to post.

There's also a cd called "Pure White Noise", that matches the frequency of the ear pieces. I set it on repeat and play it all night very low.

Cymy Sue

 
Old 09-02-2003, 01:06 PM   #4
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CherylLynn24 HB UserCherylLynn24 HB User
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Hi Cymy Sue,

You've given me more than enough to go on, so don't post anything that you're unsure of. I'll eventually find what site it is that you're referring to. Thanks again, I really appreciate your help.
Take Care,
Cheryl

I've found the listing....Thanks again.

[This message has been edited by CherylLynn24 (edited 09-02-2003).]

Last edited by CherylLynn24; 11-02-2003 at 11:45 PM.

 
Old 09-02-2003, 06:40 PM   #5
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Cheryl,

Like most, I have followed with interest your son's travails. Seems you have tried almost everything. Has he been given a diagnosis of his problem or are they just treating his symptoms? What do his scans or xrays show?

Personally, I believe you have little to lose by trying a different approach. In your state there is the
Ohio University College of Osteopathic Medicine. In their Family Medicine department they have a number of professors of Osteopathy. I would suggest that perhaps you contact them and tell them about Mike. Ask if they have anyone there who specialises in cranial osteopathy. You need not worry about it - they work in a very gentle and non-invasive manner and will tell you an enormous amount about the biomechanics going on with Mike's problem.
I know I sound like a broken record with respect to Osteopaths but I really have seen them work wonders in the most gentle way - for people who have tried almost everything - and usually who have found themselves on the "symptom chase". for instance, Osteopaths have a very high success rate with tinnitus. Mike sounds like a prime candidate for them - you really might get a big surprise. Call them.

 
Old 09-03-2003, 09:26 PM   #6
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CherylLynn24 HB UserCherylLynn24 HB User
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Mike,

Thanks for your reply. Currently, he sees a therapist that does Cranial Sacral Therapy with him. She's told me that this entails working with the 'tiny' bones in the head and sutures and so forth. Is this remotely similar to cranial osteopathy?

He's has had MRI's, CT scans, x-rays and so forth. They've all come back fine. His problem seems to be of muscular nature at this time. His current dentist is trying to bring the lower jaw forward. From what I understand, his lower jaw being set too far back can cause all of the problems that he's having. The splint that he is supposed to get on the 11th is supposed to bring his jaw forward some....the previous 5 splints weren't designed to do that. Hopefully, this one works for him. I have also noticed that his lower jaw somewhat recedes, it's not as prominent as it once was. It's not as obvious as some of the photos I've seen 'out there' but noticable to me. Any thoughts?

Once again, thank you for the idea of cranial osteopathy. I have looked at the College's site and will have to call and speak with them.
Cheryl

Last edited by CherylLynn24; 11-02-2003 at 11:48 PM.

 
Old 09-04-2003, 09:44 AM   #7
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Hi C

No, Cranial Sacral therapy is not Cranial osteopathy. A cranial sacral therapist is not an osteopath (well, they might be I suppose, but not usually). It is a pretty powerful therapy though but osteopaths work more phsiologically, anatomically and know a great deal more although youirs seems to be knowledgeable about the skull but I would not know unless I spoke to them. That is not to say I would suggest stopping the CrSac though...

Anyway have a chat with the college.

As for the other treatments. I have followed Mike's story and the overwhelming feeling is that he has seen so many people and had so many treatments. That may not be the case but it is my impression. That is totally understandable - I would do the same with either of my children - you just want to stop the suffering. If I were to be asked for an opinion - and whilst I have researched this I am NOT a physician of any kind so take it in that context...as well as the fact that he is not my child!..I would personally say that it might help to slow down a bit and take some of the anxiety out of it. Splint therapy is no doubt a good thing but in a growing boy I can imagine it would cause some pain - and as an osteopath will tell you, it is all about musculature and the balance of the biomechanics. In searching for a cure in the dedicated and determined way you are, you are also - maybe, creating expectation at each stage which is not immediately satisfied. And this in turn may cause further anxiety and tension in your lad. Please understand, this is not in anyway a criticism of what you are doing for him - just a view from an outsider who does not of course fully know the level of suffering.

I think you should also try to console yourself (and Mike) with the fact that serious or acute conditions have been ruled out. One of the characteristics of these conditions are the severity of the symptoms. In the medical profession, and as adults, there is a tendency, when a child is suffering, to take grand action to try to alleviate that suffering - because it seems so extreme in a child - even though the cuase may be relatively simple to cure, often they do not look for the simple..

When I was eleven, one day I was in terrible pain in my leg and groin, I could not walk, could not move. We were on a school visit on a hot day and as a result I also got sunstroke, then bronchitis. I was in hospital in terrible pain for two weeks - they ran test after test, xray after xray. It was a mystery, the best paediatricians were called in. They suspected something serious - rhuematic fever etc. But nothing. I was in such a bad way everyone, including the cleaners who came into the ward, used to be in tears at my bedside - I was moaning and crying and in so much pain all the time. My mother, who brought four of us up on her own, would come into the hospital at five in the morning on her way to work. I was usually asleep, but it was fitful, I had a very high temperature, I would be in and out, crying in pain.. but she would sit by my bed, the only visitor at that time of the morning in a dark, silent ward and I was hardly aware of her. It makes me feel quite emotional to recall how she must have felt now that I have my own children. Things were getting desperate and as a last resort, just for the sake of trying, they decided to put my leg in traction. Can you imagine then how she felt when the very next morning after traction began, she came in to find me sound asleep, laying on the side of my bad leg! I simply had a trapped nerve in my groin/hip. The simple did not occur because I was suffering so much.

So I fully understand your anxiety. You are at an advantage because Mike is a teenager, no doubt articulate and can discuss things with you. He will no doubt sense your anxiety. Speak to the osteopaths. I really do believe, from what you say, that they can help Mike in the most gentle, progressive and non-invasive way. It is astounding what they can achieve in just one session. Good luck, and do let me know what they say/happens.

 
Old 09-05-2003, 12:19 AM   #8
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mdla HB User
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I agree the Tinnitus is worse than the pain. It makes the pain worse because I can never relax, never sleep without some type of sedation no matter the amount of white noise. It drives me crazy. Ive heard of a machiene they use for Meneres disease its made by the company that Jerry............ the guy for Jerrys kids promotes (he has a thing in his body that helps with pain I saw him on Conan Obrien promoting it and CNN). I forget the name but I wonder if this helps with tinnitus at all/ Ill try to find out.
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