It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



TMJ Disorder -TemporoMandibular Joint Message Board

  • Looney??? If you're around, please give us an update...

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 01-14-2004, 12:54 PM   #1
    delilah1963
    Senior Member
    (female)
     
    delilah1963's Avatar
     
    Join Date: Nov 2003
    Posts: 130
    delilah1963 HB User
    Looney??? If you're around, please give us an update...

    I've been worried about you. I saw where you were going to make some phone calls and try to get some guidance on your splint therapy to help ease up your spasms.

    When you get a chance, let me know how it's going, K?

    Take care,
    Delilah

     
    Sponsors Lightbulb
       
    Old 01-14-2004, 06:05 PM   #2
    looney
    Member
     
    looney's Avatar
     
    Join Date: Aug 2003
    Posts: 80
    looney HB User
    Re: Looney??? If you're around, please give us an update...

    Delilah,

    I'm still very bad with my muscle spasm. I get so anxious thinking about how long I've been like this. It's been a year that I've had TMJ symptoms, 4 months that I've been very severe like this, and I've been in my NM splint for almost 3 months now with no improvement. I have found some relief with trigger point therapy and massage. And my neck and shoulders are a little better doing exercises four times a day, but it's SO hard dealing with the chronic pain.

    My temples are severely tight and they hurt so bad, it feels like my scalp and forehead are frozen. They literally won't move even when I try to look up. The skin is just stuck like that because the muscles are in tight spasm. I read in a TMJ book that if the disc is dislocated that it can cause severe spasm in the temples, but of all the people I personally know who have TMJ, none are so bad as this. I don't understand it.

    I'm considering going to a TMJ specialist clinic in Milwaukee, WI. I called my insurance company and they don't want to pay for a second splint since my first is only a few months old. If I want this treatment from this new provider, it looks like I'll be on my own as far as payment. I don't know what to do. We don't have the money. We would have to take out a loan because it costs between $4,500 and $6,700 for the whole Phase I part of the treatment. The fact that I've already paid my current dentist nearly $4,000 breaks my heart when I've made no progress and he has not adjusted my splint even once during this time. He says my face muscles need to relax more and then he'll adjust the splint. Well, that's not happening.

    I'm really scared, everyone. I am barely getting through the days right now. I can't take prescription pain meds or muscle relaxants due to allergies and severe drug sensitivity, so all I take is Tylenol now and then. I can't take anti-inflammatories either due to the severe tinnitus and hyperacusis I have.

    My husband says I have to get this taken care of no matter what the cost, but how do I know that TMJ guy #2 can really help me?

    I'm in despair here. If you all are in this kind of pain too, you have my sympathy. You must be stronger than me because I feel like I can't handle this much longer. I'm praying God will lead me in the right direction.

    I am so grateful for this forum and for the concern here,

    Looney

     
    Old 01-14-2004, 06:22 PM   #3
    sunshine123
    Senior Veteran
    (female)
     
    sunshine123's Avatar
     
    Join Date: Mar 2001
    Location: San Diego, Ca.
    Posts: 1,825
    sunshine123 HB Usersunshine123 HB Usersunshine123 HB Usersunshine123 HB User
    Re: Looney??? If you're around, please give us an update...

    Quote:
    Originally Posted by looney
    Delilah,

    I'm still very bad with my muscle spasm. I get so anxious thinking about how long I've been like this. It's been a year that I've had TMJ symptoms, 4 months that I've been very severe like this, and I've been in my NM splint for almost 3 months now with no improvement. I have found some relief with trigger point therapy and massage. And my neck and shoulders are a little better doing exercises four times a day, but it's SO hard dealing with the chronic pain.

    My temples are severely tight and they hurt so bad, it feels like my scalp and forehead are frozen. They literally won't move even when I try to look up. The skin is just stuck like that because the muscles are in tight spasm. I read in a TMJ book that if the disc is dislocated that it can cause severe spasm in the temples, but of all the people I personally know who have TMJ, none are so bad as this. I don't understand it.

    I'm considering going to a TMJ specialist clinic in Milwaukee, WI. I called my insurance company and they don't want to pay for a second splint since my first is only a few months old. If I want this treatment from this new provider, it looks like I'll be on my own as far as payment. I don't know what to do. We don't have the money. We would have to take out a loan because it costs between $4,500 and $6,700 for the whole Phase I part of the treatment. The fact that I've already paid my current dentist nearly $4,000 breaks my heart when I've made no progress and he has not adjusted my splint even once during this time. He says my face muscles need to relax more and then he'll adjust the splint. Well, that's not happening.

    I'm really scared, everyone. I am barely getting through the days right now. I can't take prescription pain meds or muscle relaxants due to allergies and severe drug sensitivity, so all I take is Tylenol now and then. I can't take anti-inflammatories either due to the severe tinnitus and hyperacusis I have.

    My husband says I have to get this taken care of no matter what the cost, but how do I know that TMJ guy #2 can really help me?

    I'm in despair here. If you all are in this kind of pain too, you have my sympathy. You must be stronger than me because I feel like I can't handle this much longer. I'm praying God will lead me in the right direction.

    I am so grateful for this forum and for the concern here,

    Looney
    Hi Looney: Will the DDS let you make monthly payments? That's what I'll have to do for braces when the time comes. This will be my 4th time with splint therapy, so I can relate about paying all that money for your previous treatments. I feel so bad for the pain you're suffering with. What type of massage do you get? The Orthodontist mentioned cranial sacral therapy to me the other day. I've never tried it, but have heard good things about it from other people. I use a heatingpad on my face to relieve spasms and headaches and I do jaw and neck stretches and take hot baths to relieve pain.

    I wish I could offer you more advice. All I can say is things WILL get better. We have to believe that!!!!!!!!

    Hugs,

    Sue

     
    Old 01-14-2004, 06:55 PM   #4
    Michelle99
    Senior Member
    (female)
     
    Michelle99's Avatar
     
    Join Date: Aug 2001
    Posts: 153
    Michelle99 HB User
    Re: Looney??? If you're around, please give us an update...

    Hi Looney,

    I feel so bad for you. Are you completely opposed to trying an NTI? I know some people on this board did not do well with it, but with a partnership with a dentist who believes in the device and is committed to making it work, the results can be excellent. I hope I don't sound like I am trying to pressure you. Your symptoms sound like the kind that typically respond well with NTI, and I just want you to know that the option is out there.

    Whatever you decide, I wish you the best.

    Quote:
    Originally Posted by looney
    Delilah,

    I'm still very bad with my muscle spasm. I get so anxious thinking about how long I've been like this. It's been a year that I've had TMJ symptoms, 4 months that I've been very severe like this, and I've been in my NM splint for almost 3 months now with no improvement. I have found some relief with trigger point therapy and massage. And my neck and shoulders are a little better doing exercises four times a day, but it's SO hard dealing with the chronic pain.

    My temples are severely tight and they hurt so bad, it feels like my scalp and forehead are frozen. They literally won't move even when I try to look up. The skin is just stuck like that because the muscles are in tight spasm. I read in a TMJ book that if the disc is dislocated that it can cause severe spasm in the temples, but of all the people I personally know who have TMJ, none are so bad as this. I don't understand it.

    I'm considering going to a TMJ specialist clinic in Milwaukee, WI. I called my insurance company and they don't want to pay for a second splint since my first is only a few months old. If I want this treatment from this new provider, it looks like I'll be on my own as far as payment. I don't know what to do. We don't have the money. We would have to take out a loan because it costs between $4,500 and $6,700 for the whole Phase I part of the treatment. The fact that I've already paid my current dentist nearly $4,000 breaks my heart when I've made no progress and he has not adjusted my splint even once during this time. He says my face muscles need to relax more and then he'll adjust the splint. Well, that's not happening.

    I'm really scared, everyone. I am barely getting through the days right now. I can't take prescription pain meds or muscle relaxants due to allergies and severe drug sensitivity, so all I take is Tylenol now and then. I can't take anti-inflammatories either due to the severe tinnitus and hyperacusis I have.

    My husband says I have to get this taken care of no matter what the cost, but how do I know that TMJ guy #2 can really help me?

    I'm in despair here. If you all are in this kind of pain too, you have my sympathy. You must be stronger than me because I feel like I can't handle this much longer. I'm praying God will lead me in the right direction.

    I am so grateful for this forum and for the concern here,

    Looney

     
    Old 01-14-2004, 11:48 PM   #5
    CherylL24
    Senior Veteran
    (female)
     
    Join Date: Apr 2003
    Posts: 1,584
    CherylL24 HB UserCherylL24 HB UserCherylL24 HB User
    Re: Looney??? If you're around, please give us an update...

    looney,

    Hang in there. You are one tough lady. Anyone who deals with this mess is tough. As for treatment costs, $4,500 and $6,700 seem far too excessive. What kind of specialist is this? Have you checked into functional jaw orthodontists, the American Academy of Craniofacial Pain, or the Pankey Institute? They offer listings of specialists in your area. I've taken my kid to quite a few already and most consults. have been free. It can't hurt to see what others think before spending that kind of money. Let us know what you decide.
    Cheryl

     
    Old 01-15-2004, 06:32 AM   #6
    delilah1963
    Senior Member
    (female)
     
    delilah1963's Avatar
     
    Join Date: Nov 2003
    Posts: 130
    delilah1963 HB User
    Re: Looney??? If you're around, please give us an update...

    Dearest Looney,

    Your husband it right. You need to make the commitment to yourself to see someone else and find some relief. I do not understand how your current dentist cannot adjust your splint. This makes no sense to me at all. My instincts tell me this is wrong, wrong, wrong and I know from your previous posts that your instincts are telling you the same thing.

    At the very least have a consultation with this place in Milwaukee or get on the American Academy of Craniofacial Pain website. I saw where there were two or three practitioners in the Green Bay and Appleton area on their website. Make an appointment with SOMEBODY Looney and show them your splint. Find out what's going on.

    This has got to stop, Looney. Something is very, very wrong with your splint for you to continue to be in so much pain and spasm.

    Gentle hugs ((((Looney)))),
    D.

     
    Old 01-16-2004, 06:40 PM   #7
    looney
    Member
     
    looney's Avatar
     
    Join Date: Aug 2003
    Posts: 80
    looney HB User
    Re: Looney??? If you're around, please give us an update...

    Dear All,

    Wow, this is a great board. There is so much concern here - people taking time to actually check things out for another person who needs help. That's so great. Thanks to you all. I appreciate your thoughts.

    I am intrigued by the NTI, and I'm definitely going to look into that. I'm having a terrible time with tension-type headache pain around my head - it's horrendously severe, and it never lets up. I guess that's a form of migraine I think. I read the NTI is supposed to help stop spasm in the temple area. I wonder if anybody else has had luck with this.

    My current dentist is certified by the American Academy of Craniofacial Pain. He seems to have all the right promotional material - stating he is so experienced with head and neck pain, and yet, it seems the only thing I've got to help me is a TENS machine. I guess all the other patients must take those powerful pain killers and muscle relaxants - neither of which I'm able to take. (

    I will look into the Pankey Institute. Now that I've lost out on this splint and the $4,000 I and my insurance company have already paid . . . ughhh! I'm just going to have to be careful about the next step. Research, research. It's so frustrating. I'll ask about a payment plan at the specialist in two weeks. I'm going to a TMJ specialist in a few weeks so we'll see what he has to say.

    I need help and answers. I don't think I can last much longer in this state without doing something about it - like major meds, surgery, or I don't know what - but none of them seem like good options.

    Thanks again, and any other words of wisdom are ALWAYS appreciated.

    Looney

     
    Old 01-17-2004, 12:46 PM   #8
    GenDen
    Veteran
     
    GenDen's Avatar
     
    Join Date: Sep 2002
    Location: Kaysville, Utah USA
    Posts: 348
    GenDen HB User
    Re: Looney??? If you're around, please give us an update...

    I know you have had massage therapy and trigger point, but you might need something different in physical therapy. I was fitted with a splint that moved my lower jaw forward into a new bite. This was done so that there was the optimal 3mm of joint space. However, I didn't begin to get better until I went to a physical therapist who knows how to diagnose what is happening mechanically with the jaw joint. The joint needs to translate in a very specific way or there is trouble. Often the capsule is tight because of various reasons, usually muscle contraction/spasm and tight ligaments. This has to be corrected by someone who knows how to do it. Also, often people with jaw joint problems also have problems with the neck muscles because of the cascade of muscle spasm and contraction. If the jaw and the neck are not functioning correctly mechanically, the muscles scream out in protest. I have had several years of massage therapy, physical therapy, trigger point therapy, feldenkrais, etc. I would feel better for a few hours after treatment, but then it was right back to the tight muscles in my jaw, face, scalp, throat, neck, even back. I also often had an earache. The physical therapist I see went to a physical therapy school that trained in the treatment of TMJ dysfunction (many physical therapy schools don't) and then he worked at several TMJ dysfunction clinics where he believed the best specialists were so that he could learn. I know it is hard to find such a physical therapist. I think the question I would ask would be if they knew how to determine the correct mechanical translation of the jaw joint and then knew how to fix it if it was not correct. My physical therapist can work on the nerve relay points to settle down the spasming muscles. As time goes on, the nerves are not so hypersensitive and the muscles react normally. You can do all the massage and trigger point you want, but if the function is not correct, the problem continues. First, it is important to have the right TMJ dysfunction specialist who can provide the right splint, then it is important to have the right physical therapist. It is hard to find the right people, but they are out there. Best of luck. My insurance does not pay for TMJ treatment, so everything has been out of pocket. I can tell you that it is a lot less painful to think about the cost when the treatment is actually working. I could have bought a very expensive luxury car with the money I have spent on treatments that didn't work.

     
    Old 01-17-2004, 01:30 PM   #9
    looney
    Member
     
    looney's Avatar
     
    Join Date: Aug 2003
    Posts: 80
    looney HB User
    Re: Looney??? If you're around, please give us an update...

    GenDen,

    Boy, that all sounds so interesting and true. Where did you find such a person? What state are you from?

    I don't even know where to go any more.

    I'm so discouraged, and the agony of the nonstop pain. Oh, I cry a lot these days. I don't think I'm going to make it out of this mess if something doesn't turn around soon.

    Thanks for the info,

    Looney

     
    Old 01-17-2004, 03:22 PM   #10
    GenDen
    Veteran
     
    GenDen's Avatar
     
    Join Date: Sep 2002
    Location: Kaysville, Utah USA
    Posts: 348
    GenDen HB User
    Re: Looney??? If you're around, please give us an update...

    I found my TMJ Dysfunction specialist on the referral area of the American Academy of Craniofacial Pain website. That doesn't mean that all specialists on the referral list are good. I lucked out. He is a Functional Jaw Orthopedist. I found the physical therapist by looking in the yellow pages of the phone book for someone who specializes in TMJ treatment. There were only two and I had seen the other one for more than a year without results. He passed my telephone interview, so I tried him and I knew the first visit that he was the one to help me. I live in Utah, near Salt Lake City. Don't give up. There is help. You just have to keep trying.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Spinal Fusion - how do you know you're fused? grannyjanny1 Back Problems 10 04-03-2010 08:23 AM
    Update on change over of pain medication's:Pepper, you're in here too! shelby3195 Chronic Pain 6 08-27-2008 12:41 AM
    *sigh* I'm depressed and only one person knows... Insane_Elaine Depression 5 02-14-2006 02:20 PM
    So, you're anoerxic or you want to become anoerxic; please, read this. Faith80 Eating Disorder Recovery 21 09-11-2003 03:42 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 08:55 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!