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Old 05-21-2003, 11:39 PM   #1
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Hello,

I took Mike to Masso. on Tuesday. I don't know if any of you remember my last post regarding Masso., but he was supposed to see the owner this week. (also a tmjd suffer-bearable now) She had me go in with him. (usually I have him go in alone, so that he's not uncomfortable with Mom there) Anyway, she's licensed by the Ohio State Medical Board, and has a: LMT.,NMT.,CST.,MLD. after her name. (I'm clueless) Also, this is a highly reputable facility. By the way, he's been going once a week for the past few months. Now, she took his complete history as to when all of this began, who he's seen, splint usage, drugs, etc... She seemed to be very thorough. The lady that he usually sees massages out the knots in his muscles every week. This lady wanted to try a different approach. She said that she was going to work on all the tiny bones in his head. She seemed very knowledgeable about every muscle, bone, etc. that we carry around on our shoulders, and the neck, too, don't want to forget that. (I was impressed, it felt as though I was talking to one of you) After working on his head for awhile, she wanted to work inside his mouth. Now, usually, the other lady would put a glove on and massage the small muscles inside of his mouth. This time, she worked on the pallate (sp?) As soon as she touched it, she said "Holy ****, this is like a rock". She said something to the effect that it seemed as though his pallate was somewhat buckled. ?? I have no idea what she meant. I ask sooo many questions everywhere that I go, but sometimes some things are said so quickly that you're on to the next thing. She also worked on his neck, and said that his neck and jaw are out of line. She did something with his neck while we were there and told me to call her the next day and let her know how he was. The pain level came down from an 8 to a 5 for the entire evening, and that's the most relief that he's seen so far. (by morning, it was back to the norm)

Now, she seems sincere, telling me that she's tired of taking my money, and that she (and all the staff) want to see this boy well already. She said that she's gone to some seminars with a chiropractor in the area and that he's very good, especially with kids. She even offered to give me names and phone numbers of parents with children that this man has helped (or at least decreased symptoms) in the past year. She knows who Mike's pediatrician is, and thinks that he is a great doctor, she also knows of his tmj doctor, and isn't impressed with him. She seems to think that no splint will work until his neck and jaw are 'in alignment'. (he does have the 'jutting the head forward' thing)

I'm willing to give the doctor a try, so I called and got an appt. for this Friday. (they seem to get you in quicker no matter where, when they hear that
it's a child) She's going to catch him up to speed on Mike's past few months there, and what they've seen. Now, I've read that seeing a chiropractor is as common as PT for tmj, but I'm still uncomfortable with it. I'm afraid, I guess, that he'll walk out of there worse. Probably because I don't know a whole lot about it. I guess I figure it can't hurt to at least let him assess Mike. I don't want any manipulation of the jaw, I'm afraid that he'll throw something out of whack.

Her 'plan of action' consists of seeing the chiro. then seeing her 3-4 times right in a row, then seeing how he is, and then she said a splint would fit properly. Now, she's a Mom, and has a nephew that had similar problems (while in braces) and she sees how distressed I am every week, and how Mike's in pain...I don't see her as sending him in the wrong direction, it seems as though she's honestly trying to find a solution, or at least, some relief.
She seems to be an honest caring person, and knows what she's talking about.

He's already had an MRI of the head, neck and tmj's, (normal) so I don't think that I have to worry about any problems with the cervical spine. I've never gone to a chiro. Have any of you tried? Does it offer any relief? Made you worse?

Please excuse my going back and forth, my mind is really going, and I've been ill. This is the first person who actually seemed ticked that this kid has gotten no relief thus far, and is really trying to help, and has gotten his pain level down for a short time. She also said that sending a kid his age to a pain clinic is 'crazy'.

I'm sorry if I sound completely insane to all of you, but I'm deathly afraid of making him worse, and a chiropractor is something that I know nothing about. Any thoughts?

Cheryl

 
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Old 05-22-2003, 12:50 AM   #2
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Heya Cheryl! That's great that she was able to get his pain down that far even if it's just for one night! Maybe up'n those visits with her might make him feel better more than just once a week. As for the chiro... my experience was less than satisfactory. Mine claimed to be seeing a lot of tmj patients, but did not offer references like this lady seems to want to. I'd take her up on that offer. Call these people and find out what you are up against. I'd find out if initially the pain was worse and then better.. or if he's really all they say he is.

With me.. one adjustment and I was in horrible pain for 4-5 days. It seemed to send me back a bit, but I never went back after that so I don't know if that could be normal or not. I just know I couldn't bear the pain. But as with anything with tmj... each person reacts differently and I really do feel like a chiro could help some people with tmj... especially if the pain is more joint related than muscle related.

I guess my only other concern is that she seemed to make some bold statements about Mike's bones without xrays.. just by feeling. I do know that you can feel certain things, but only xrays can show that for sure.

As my regular doctor told me when I said I was going to see a chiro.. keep in mind that these people make money off building up regular customers. They want to talk up the treatment and make it seem as if it is the only one that will work. They want you in that mindset you having tremendous hope so that you will keep coming back. It's easy for us who are in pain everyday to listen and respond positively to anyone who can offer such hope.

I guess my message might sound discouraging and I hope that isn't the case. This guy might be the one that is going to cure Mike... just maybe don't put all your faith in him all at once. Has Mike been having any success at all with the splint? Maybe you should ask the person that gave the splint what they think about the treatment. She also said that she has heard good things about your reg doctor so maybe you should ask them if they have heard of her or the chiro.

Sorry this was so long and scattered.. getting to be the wee hours of the morning and my brain is shutting down. So how are you doing? You said you were sick... you have a cold or something?

panch

 
Old 05-22-2003, 04:54 AM   #3
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Hi Cheryl,
It seems as though some of what this practitioner did (massaging bones in head and working in mouth this way) was something called "cranial sacral therapy".
For some this is a great and gentle massage technique.
It's theor is based on freeing up restrictions of the Dura (the tube that houses our spinal cord and runs from the sacrum up to the skull).

I have been through this therapy (for spine problem, not the tmj))- and found it relaxing but no enough to break up my deep muscle pain. I certainly don't think it could harm Mike. If he finds relief - than it may be a good way to cut down his pain.

As for the chiro, gosh...it's so hard to make a judgment. They are all very different in their approaches. The last one I saw was very aware that forceful adjustment was not appropriate for me. I have very loose ligaments - and already sublux and clunk most of my joints just by daily funcitioning. He did gentle soft tissue manipulation (massage like) - and also used an infrared technology on my muscles. He knew a whole lot about trigger points and myofacial pain (Janet Travell's work) - and approached me more like an osteopath than a chiro.

I have seen chrios who have been quick to "crack" --- stay away from these. I'm not sure if Mike is hypermobile in his joints (is he very flexible - cracks a lot on his own???)....but if so, defintitely do not allow any "high velocity" manipulation of anything!

It's encouraging that this woman was so interested and seems knowlegable and compassionate. Perhaps taking some of her advice with caution would be a good step for Mike.

By the way... you may want to read more about Cranial Sacral Therapy - I'm sure if you do a search you may find good info on line. I believe Dr. Upledger was the physician who invented this theory - and treatment. I wonder if others here have tried it... Your new practitioner does have the CST after her name, so I'm pretty sure she's licenced in this - along with massage therapy..and some others.

Best to you and Mike..
Robyn

 
Old 05-22-2003, 05:34 AM   #4
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Morning Cheryl!

Hope you're enjoying our sunny morning! OK, so the PT want's him to see a Chiro...interesting. My back and neck go out of alignment once in a while and my PT fixes it. She manipulates the bones with my muscles by turning me one way and having me push gently against her (resistance builds) and it fixes things. Sometimes it takes a few times, but I can instantly feel the knots in my back and neck etc...go away!

So...with that being said, I've only been to a Chiro once before and she saved my vacation and was very careful about what she did. I would say, talk it over with Mike and see if he wants to try it once with the understanding, that it might backfire or it might be wonderful. It's true that you can massage and manipulate the muscles until your PT's hands are numb and nothing will happen if your body is out of alignment...so I'd say give it a shot as long as Mike understands that this is just a test....just another shot at trying something new.

I'd hate for him to get his hopes up that this might be a miracle cure for him and then have the opposite happen!

As for me, my headaches are ok...had one yesterday, but was able to control with valium and an Advil, Tylenol mix....I think it's the rectus muscles and optic nerves that are just torqued right now and since I'm a computer jockey, they get very irritated by staring at the screen and by the lights here at work. I'm hoping that they are fewer and less painful as things continue to calm down. I am stopping my vestibular work though as my PT and I both think that this is exascerbating the problem.

So, I'm geared up for our pseudo rainy weekend and my goal is to shoot for another 'good' week! I hope you are feeling better every day and that Nikki is understanding you don't feel well and is giving you a break!

Have a restful weekend! (If you hear sirens this weekend, just ignore them...my husband doesn't do well with grills! )

Jennifer

 
Old 05-22-2003, 06:06 AM   #5
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Hi there Cheryl,

I really sympathise, it must be so hard making decisions on your son's behalf, it's hard enough deciding what to do for myself - wondering whether something will make things worse.

I think P nacho is right, why not take her up on the offer of talking to other parents with children who have seen this man. This sounds like a great opportunity anyway - how brilliant to talk to other parents facing the same dilemmas you face! You may even be able to swap other useful info on practioners nearby etc... I think everything she has said about Mike's neck and needing to deal with that so the splint can work sounds very sensible - the neck/shoulder tmj relationship is v. big, and I have now read a number of things that say that the neck should never be over looked when treating tmjd - the whole area from back to shoulders to neck up plays a part.

I understand your reservations about a chiro - but remember, you are in control of the situation - you could see him and I am absolutely sure he wouldn't do any major adjustments without your permission. Once you are there you can see how you feel, if you trust him etc.... If you don't like what is happening you and Mike are at total liberty to just walk away. Although this was a different situation I thought it might be useful to mention that I do know of parents who had a teenage son who experienced balance problems after a fall. They went to a local chiro who was strongly recommended. At first they allowed him to do no major adjustments, they built up trust with him, and, whereas the hospital had been useless , this man did eventually ask if they wouldn't mind if he did one major adjustment to their son's back. It is one of the only instances in which I have heard of someone being instantly cured. His balance which had been appaulingly bad, (Unable to walk unaided) returned immediately. I realise this is a different situation to Mike's, this boy did not have tmjd, BUT I thought it was worth mentioning as there are lots of scare stories about chiros, thought it might be useful to hear a positive one.

I did try cranial sacral therapy once, I'm not sure the man I saw was much good, he really just lay his hands on my head for 40 mins whilst I lay on my back. I ended up thinking I could've gotten a friend to do that and it wouldn't have cost me anything, lol. I have, however, heard a lot of very good things about cranial osteopaths - different from cranial sacral therapists. I think there have been a few discussions on this board about cranial osteopaths, might be worth checking out on the search engine - they are also experts (I believe) in the the relationship of the neck to the jaw etc, they train for many years. I think that their adjustments tend to be less severe than those of chiropractors. I am thinking of going to one. Just another suggestion for how you might approach Mike's neck/jaw relationship that could be a little less scarey than a chiro.

In short, I do think that if the masseur did some work on his neck and his symptoms decreased for a while, it is definitely, one way or another, imperative to follow this up. Sounds like this was a big pointer that the woman you saw is talking sense.
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Old 05-22-2003, 08:41 AM   #6
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Cheryl,
I have never been to a chiro before, but if Mike wants to see what it is all about I am sure you can just consult with them first. I have to agree with Jennifer there is a chance that it can back fire but there is also a chance that it will help him imensely. My pt says that I am not ready for a chiro yet. Also I have heard that once you go you tend to go forever. Remind Mike of that also. Some people I know are going for the rest of their life, and Mike is so young when it comes to a treatment FOR LIFE.

I think take the lady for what it's worth. She seems sincere but remeber she is also human. The fact that she is willing to give references is a very good sign. If she has tmj most likely she understand the pain Mike is going through. I would definetly ask if his age will be a factor in any of this. He seems to still be a growing boy, and you don't want any to jeporadize that.

I guess what I am trying to say is ask questions and make sure there is no doubt in your mind that you both want to try this. It may be his pain but because it is his I know it also hurts you.

Heather

 
Old 05-22-2003, 01:37 PM   #7
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Thanks to all of you for your wonderful advice. I will respond to you later. Unfortunately, I napped longer then planned today, (migraine) and I have to go to the school for a dinner, soon. Thanks again, Cheryl

 
Old 05-22-2003, 07:29 PM   #8
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panch,

Where have you been? I thought that you left us! So, how are you feeling? Mike brought home some ungodly virus that he's given to me, great, huh?
I remember you mentioning a chiro. in the past, and saying that you hurt much more. You didn't sound discouraging, I want to hear the positives and the negatives. Ya know, I try to educate myself to try to know a little of everything, but as for these 'bones of the head' and so forth, I'm lost. She was talking about sutures (sp?) and all different types of things that I'm not familiar with. Oh well, something else to learn.

I'm not thinking that this will be a cure for Mike, but maybe something to supplement his splint and masso. I understand that sometimes it can take a combination of therapies. His splint doesn't seem to be working. We go back to see the tmj doctor on Tuesday, so I'll see what he says. I called his regular doctor today to ask about this chiro., but I was in and out so much that I probably missed the call. I think I'll take him for just a consult. tomorrow, and see what he thinks and says. I understand that it's our choice, not his. (and he won't talk me into anything!) I will find out more before I commit to anything, though! Thanks, panch, and I hope you're having a good night.

Robyn,

Boy, I wish that I had you there while this woman was talking to me, it sounds as if you know what she's talking about! I feel fine about the cranial sacral therapy, but it's the chiro. that makes me nervous. He is a very flexible kid, that cracks pretty much all the time, on his own. I would never let any chiro. jerk him around and so forth, though. I will do a search on CST later, and find out a little more about it, so I have an idea of what's going on. Like I said earlier, I'll go for the consult tomorrow, and that's it for now. I don't want to make any rash decisions that I might regret. I hope all is well, and thanks for offering me your advice.
Cheryl

Jennifer,

How are you doing? I missed most of the nice day, sleeping. I needed it, though. Why does everything have to be such a tough decision? I'll just see what the doctor has to say tomorrow, and come home and think about it. I do understand, however, that it won't be any type of miracle cure. I was just thinking that maybe in combination with the other therapies, that it may be beneficial. Mike's all for trying it, but sometimes when you're in pain for so long, you're willing to try nearly anything. I'm just really afraid that he'll end up worse than he is now, and he doesn't need a setback like that. We'll see what the doctor says...
I'm glad to hear that your headaches are o.k. How can you function on valium? That really knocks me out! Have to stick with what works. So, do you have any plans for our long, rainy weekend? Hopefully, they got our forecast wrong!
I'll remember if I hear sirens, it's your husband....If you're driving down Madison Ave.,and you see this lady walking this wild dog saying, Nikki-No, Nikki-stay, Nikki-sit, you'll know who that crazy lady is!!!!
Have a wonderful weekend, Jennifer, and thanks for your advice.
Cheryl

hbep,

Let me tell you, it's SO hard making decisions for someone other than yourself. It's difficult knowing that you have your kids' well-being in your hands and that anything you chose, could make them worse. I did a search on cranial osteopathy before, but I wouldn't have a clue as to finding one in my area. I wonder if my insurance company might give me a hand? I feel comfortable with cranial sacral therapy, it seems safe, and won't make you worse. The chiro. scares me. If it were me, I probably give it a shot, but it's not me. I don't want to take chances on his behalf.
Thanks for the positive story regarding chiro's, it's nice to hear something good sometimes. Since you brought up chiro/osteopaths doing similiar work, I think I will call the ins. company tomorrow and see if they can help locate one. Otherwise, I'll see what this doctor offers, and use the weekend to think it over. Thanks for responding to me, and have a good weekend.
Cheryl

Heather,

I decided that I will take him tomorrow, and only go for a consult. I'll see what he says, and come home and think it through. You're right, he's young, and I don't want him having to go somewhere forever! And when I go, I'll ask, ask, ask, everything. Thanks to all of you for instilling that in my head. This is his life, and I surely don't want to screw that up. Thanks for responding to me, Heather, and have a good night.
Cheryl

 
Old 05-23-2003, 07:57 AM   #9
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Cheryl,
How is the dog thing going?????? We are having cat trouble over here. Out of the blue, both of our cats have found the furniture. The funny thing about it is it's not the couch or are chairs. They seem like to claw out nightstands and dressers. We decided that we need to buy them a scatching post. We still have our bulemic boy cat tiger throwing up everywhere, but he has slowed down his eating (A LITTLE).
Heather

 
Old 05-23-2003, 09:47 AM   #10
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Hey There Heather,

How's it going? Did you find yourself a new doctor yet? I hope that you're doing all right.

The dog.....Geez....the thing's wild. My other 2 were nothing like this, but they're mutts. Maybe it's a pedigree thing, I don't know. Last weekend I was seriously thinking of selling it. This week, very few accidents. After not feeling well this week, and having the dog snuggle next to me, I don't think that I could get rid of it!!!!!!Mike's quite attached and I think I'm getting attached, too!

Wow! It sounds like you definitely need a scratching post before you have no furniture left! My next door neighbor got a kitten last summer, and it eventually tore up everything in his house! Is something wrong with one of your cats? This dog eats soooo fast, that she usually throws up and, well, I won't say....you get the picture! Have a nice afternoon.

Cheryl

 
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