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  • I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

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    Old 04-27-2009, 11:16 PM   #1
    diondranicole
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    I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    Hi everyone! Does anyone know about the Orofacial Pain Clinic at UC San Francisco?? Here's my scoop...

    I am new to the message board/TMJ scene, but i am hoping someone here can help me out. I had this jaw trauma from a bad chiropractor and have been dealing with this since November 2008. I am supposed to go away to school to San Francisco State (about 4 hours away from my home town) starting august, and of course my big fear is to go away from home and still be suffering like i am now, living alone and struggling through school and work all alone with no progress in healing and depressed. The only doc that i've heard is good and was recommended was a guy at UCLA, but thats 4 hours away from where i live now, and once i move i will be 7 or 8 hours away from UCLA. but i did hear about the Orofacial Pain Clinic at UCSF and was wondering if anyone has ever been there, knows anything about it, had any success, or has any other suggestions? I live in the San Luis Obispo area of California and am so lost as to who can help me out in my area currently, or in the San Fran area when i move. I just don't want to go to some hack, waste my money (or make things worse), because a hack chiro is what got me into this in the first place!

    Thanks everyone, or anyone!
    -Diondra

     
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    Old 04-27-2009, 11:54 PM   #2
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    Just wanted to add, even if you don't know of any doctors that can help, even just an encouraging word from a stranger would be greatly appreciated, i've been starting to feel like i'll be like this forever and its just been so hard, like i'm sure a lot of you know. i'd love to have some reason to hope...

     
    Old 04-28-2009, 05:49 AM   #3
    Thelma-Louise
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    Welcome to the boards. I was was wondering if you happen to check the Great TMJ doctor sitcky post at the top of the forum for a dr near where you will be going to or in the area you are in now. Hopefully other members here from your area will be able to provide you with some referrals. Have you had an MRI done of the jaws and neck yet?

     
    Old 04-28-2009, 11:10 AM   #4
    loudawg
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    Hi diondranicole,
    I live in Mountain View which is an hour south of San Francisco. I've been under the treatment of 3 different TMJ dentists. I was also recently investigating going to the UCSF's Orofacial Pain Center for treatment because I've seemed to reach a standstill w/ my symptoms.

    Of my 3 TMJ dentists, one had a close relationship w/ UCSF while the other two didn't seem to think too much of their approach. The one dentist who studied w/ UCSF's Group used the neuromuscular approach to TMJ which included TENS to release muscle tension, computer tracking to map the "natural" path for the bite, splints to treat malocclusion and complementary physical therapy. Once symptoms are stabilized Phase 2 w/ braces would begin. From looking at their website UCSF also emphasizes biofeedback (retraining your body habits) and counseling for stress. One of my other dentists said that this approach works 85% of the time - it's just not flexible for the 15% of cases that don't seem to respond which might need cranial work. There is also University of Pacific's Orofacial Pain Center in San Francisco - I haven't heard much about them although my NUCCA Chiro worked w/ them before.

    What are your symtoms? What was the Chiro treating you for when s/he aggravated your symptoms?

    Sorry for the information overload. I have combed the Internet looking for patient accounts of treatment at UCSF's program but haven't found much. If I decide to go to UCSF for treatment or even an evaluation I'll let you know how it goes.

    -Loudawg

     
    Old 04-29-2009, 11:40 PM   #5
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    Hi Thelma-Louise and loudawg,

    Thanks for the reply, sometimes just having someone to talk to makes a difference. I did look up the doctors on the great doctors list and wrote some names down of good ones in california, but none of the ones listed are really in my area. I haven't had an MRI done yet, but probably will. do you know if there is a certain type of MRI (view) i should get or just a cranial/cervical MRI? What happened to me was this chiro told me i had a popping in my jaw on my left side and he pushed down/across my left temple/TM joint, and not even with that much force, it didn't even hurt. So the next day when i woke up i noticed loud popping in my left jaw when i bit into anything with any relative force, or when i moved my jaw side to side. And when talking or chewing i would get clicking in my right jaw. there wasn't pain yet. Then about 2 weeks went by and then i started getting these horrendous tooth aches, mostly on the left side, first the top, then the bottom also, and i could never isolate a specific tooth. I went to my dentist and they took pictures of all the individual teeth and a panorex of my whole jaw/mouth, and couldn't find anything. I kept telling them that my bight felt "off" also, and so they sent me to my ortho i had when i had braces (who is really good, has pioneered special techniques and everything) and he couldn't find anything wrong, but made me a bite plate to see if that helped. it didn't, and he suggested that it could potentially be something with the discs in the joint, and if i was still having problems in 6 months to see a guy at UCLA. So here i am 7 months later, and no improvement. I have less extreme toothaches, but now more frequent headaches, still pain in the teeth and jaw joints, fullness in my ears, pain down in my neck, numbness or tingling in my face pain and pressure in my cheekbones, etc etc... Not all always occuring severely or all at the same time, but all bothersome and i'm just starting to feel like this is never going to get fixed. If it is with the discs, how do they even fix that? And it seems like most people i have read about or talked to are all more related to bad bites, bad orthodontics, muscle tension, clenching, etc. My jaw was physically manipulated, however slightly, and i have to know that someone can help me. Can you fix jaw traumas without surgery? I have a perfect bite, perfect teeth, no predisposition to this, and then one bumb on my chin and i'm ruined for life?? I don't know what to do and i've been so depressed about this.... I'm just tired of crying i feel so defeated..

    I went to the chiro to get treated for these shoulder pains (left shoulder) that came on kind of suddenly over a few weeks and these pains in my neck, like when you sleep wrong and your neck is stiff/strained. I also started getting numbness and pain down into the left arm also and saw a neurologist, who told me i most likely had pinched a nerve in my neck and eventually those things have improved on there own and with some chiropractic. I should clarify that MY chiro is really good and nice, but one day i was in a lot of pain and he wasn't in the office, but his COLLEGUE (who shall not be named) decided he would be macho and try to solve all my problems with some strange manipulations. I have regretted that day every day since then...

    sorry for the HUGE response, just wanted to cover as much as i could. I should also note that most of my pain and problems seem to have become focused on the right side. and i have tried biofeedback and despite my best hopes i dont see any improvement...

    Last edited by diondranicole; 04-29-2009 at 11:42 PM.

     
    Old 05-05-2009, 03:48 AM   #6
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    I saw both a dentist and doctor etc for face pain which felt at times like a toothache or a tooth infection, sinus, headache, ear infection and dizziness but it was a physiotherapist that fixed the problem. I had put my jaw out somehow and he fixed it in one session by stopping the muscles from spasming. Usually a sport physiotherapist is a good one to choose.

    The doctor had given me antibiotics and suggested I be tested for a cyst in my ear canal, the dentist found nothing wrong and it was two weeks before I went to physio. Good luck.

     
    Old 05-05-2009, 09:00 PM   #7
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    Hi Diondranicole,
    Your problem seems to me as a muscular. Don't think I don't understand the severity of the symptoms and the rest. I've been in all this for 9+years.
    From what you describe I am almost sure that it can be fixed, moreover w/o any surgery. In any case, beware of jaw surgeries as even according to dentists it should be reserved as the very, very last method.

    I'd suggest that you find a good masseuse in shiatsu or myo-fascial release. Personally, I believe more in shiatsu. When you will be there try focusing on your breathing and on not touching your teeth.

    It seems to me that what happened to you is what PT's call it as the "head slipped out of the socket". It's just that from the chiros work some muscles went into a deep spasm and they won't release b/c in the body many things work like a self-tightening knot (we all know about it).

    Meanwhile, while you might be looking for where to get the muscle work focus on deep relaxation, breathing, and posture!
    Hope this will be helpful.

     
    Old 05-06-2009, 06:18 PM   #8
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    thank you guys so much for your help and encouragement. I'm just one of those people that immediately jumps to the worst case scenario, and for me the worst case scenario is that this jerk knocked my discs out of place and they will never go back and i will have surgery, which from everyone i've spoken to is a big bad idea.

    This may seem like a stupid question, but does anyone know if you do have displaced discs, can they ever just go back into place on there own?

    A physiotherapist sounds like it may be a good idea, i'll look into that thanks for the suggestion.

    About the shiatsu massage, what is shiatsu all about, i'm not really familiar?

     
    Old 05-06-2009, 07:58 PM   #9
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    I know all about picturing the worst scenario! The problem with this "method" is that it makes you more nervous which makes the muscles contract more. This in turn might torque the bones and in the best case just keep the problem which you might have gotten.
    Despite all the inner desires to panic we should make a conscious effort to stay calm and relax as much as possible.

    Yes, PT is a good thing too. I am not sure about TENSing. It did not help me a little bit but actually made it worse few times. The good thing in PT is applying moist heat and then do the mild exercises for flexibility and muscle relaxation, not for strength.

    Shiatsu is an oriental acupressure method (no needles like in acupuncture) but they address the particular points which make the muscles relax and the body go back to its restful relaxed state. It is often done through the clothes. I suggest that it is important to be involved in the process by focusing on the breathing and on the attempt to relax and to do nothing! You will be amazed that some of the points on the legs will relax the shoulders, the head and the jaw.

    I wish I could have it very often. So far it is one of the very few things which help with tmj pains.

     
    Old 05-07-2009, 12:05 AM   #10
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    Re: I'm new to this, can anyone help me out? UCSF Orofacial Pain Clinic?

    Stillhope-

    I'm sorry to hear how you have been suffering for so long, and yes i totally understand about what you mean about the shiatsu, once you find something that helps its frustrating to not be able to have that relief on hand all the time, if only the world were perfect!
    Yea i don't really know what TENS is, but i've read some pretty negative stuff about it, so i don't think i'll be trying that. Its a bummer with tmj it seems like you haven't heard of it until you suffer from it and then all you hear is how hard it can be to fix. My best friend who has never had braces or anything has been complaining about her wisdom teeth bothering her lately, but says that her dentists don't see a problem and should leave them in a couple more years. She was describing some of her symptoms and it sounded a lot like tmj, but i didn't have the heart to tell her that, i just hope she doesn't have to suffer!
    Have you ever heard of yoga helping with tmj? I was think of starting yoga anyways, and some people told me it may help just with relaxing, and stretching the muscles. I'm not very active so i thought maybe by stretching and strengthening my muscles might help prevent spasm... just a thought...

    Last edited by diondranicole; 05-07-2009 at 12:06 AM.

     
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