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Old 02-24-2010, 09:42 PM   #1
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Looking for some advice....

Hi everyone. I know many of you have become "experts" on TMJ disorders just through everything you have learned as you have gone through the pain of TMJ.

I know my jaw issues are nowhere as severe as what many of you have, but I really really want to keep from getting to that point. I had a previous post where you advised me before and where I shared my experiences, but right now, I'm trying to decide where to go next.

Here is what I have learned:
-I have a hypermobile jaw joint with laxity in my ligaments.
-I have severe bruxism. I've worn an occlusal guard for 8 years now. My TMJ specialist adjusted it a bit, but has no plans for me to change. It is just an upper guard designed to protect my teeth from getting worse as I grind. I want something to help me stop grinding, but haven't been offered up any treatment solutions for that yet.
-I've already lost about 30% of the bone on the ball of my jaw joints on both sides and am at risk of developing arthritis in the joint.
-I have Myofacial pain and Cervicalgia. I did 8 therapy sessions. That is all insurance would cover. It helped some. I had some good orofacial releases. She showed me how to do it myself, but it is almost impossible. It hurts so much I just can't hold the pressure for as long as I need to get a good release. I also have a lot of muscle tightness in my neck and shoulder as well. (My massage therapist says it is basically like cement.)
-I have an ear that hasn't fully popped since last March, almost a year. I have periodic pain in the ear as well. I've been to ENT's and Audiologists. I don't have anything physically wrong with the ear. I do have tight TMJ muscles that are causing pressure on my eustachian tube. I have always had hearing loss in my right ear from birth, but over the last 2 years, I've dropped from normal hearing to having a moderate hearing loss in my left with know apparent cause--wondering if TMJ is influencing this. I need hearing aids I can't afford ($4700). I'm taking muscle relaxants to try to help some with this.
-My TMJ specialist wanted me to get a sleep study (an overnight Oximetry came back normal), follow up with my Pulmonologist and GI doc. I've had a bunch of tests and there isn't anything else they can do to help. I have a couple more pulmonary tests coming up, but I've had them before and know they will come back normal. The TMJ dentist also recommended I go for a second opinion with a shoulder ortho doc because the shoulder tension impacts on my jaw. I'm not planning on doing this. I have genetically lax shoulder joints as well and they cause some shoulder impingement. I've had surgery to help address swelling issues, but there is no safe "fix" for my shoulder. Surgery could actually make my shoulder much worse because I'd likely lose range of motion. I don't think wasting money on a second opinion will accomplish much.

Here is what I'm pondering:
-I could just continue to live with this for a while. I've had the bruxism for years anyway. If I've lived a year with my stuffy ear and some pain that is bothersome, but not excruciating, I can live with it for a while longer.
-Money is an issue for me. Basically nothing is covered by insurance.
-I could spend what I'm able to set aside going to a good massage therapist and to my PT out of pocket. Not a solution, but I might feel better.
-I can pay to go back to this specialist again. He is highly credentialed and his practice is 100% devoted to TMJ/ jaw disorder patients. He only takes patients who are referred and does absolutely no advertising of his practice. I really had a good experience my first visit. On the second visit, he didn't do much. Mostly wanted me to see all these other specialists. While I know these other things may be influencing my jaw issues, they are all chronic issues for me. (Basically he said that my reflux, which I corrected with surgery over a year ago, mild hypertension and bruxism are all signs of a sleep disorder. My Oximetry at night is normal though and I can't afford a couple thousand for a sleep test if there isn't a problem. I don't snore, just brux.) In the letter he sent me with his diagnosis and "treatment" options, he kept repeating that I have genetically lax joints and ligaments. Makes me wonder if he really doesn't want to help me out. His office was supposed to call me in January to follow up and they never did. He didn't even offer me the option of another type of splint either. I know I brux at night, I want to do something about it besides just listening to the relaxation DVD he gave me.
-I found another Orthodonic dentist in my area who specializes in Myofacial Pain and whose practice is about 80% TMJ. He is only one of 6 in the state who have this specialty. (The other in my area is the one I already went to.) It is $195 for a first appointment which is 1 hour with the dentist and a few small test. If he feels it is necessary, he will do more testing, including an MRI. I don't have the money for all of that right now. (I already paid for one of those 3-D type CT scans to find out about my bone loss.) Anyway, after all that testing, he would discuss my other treatment options.
-I did find a Neuromuscular dentist in the area who treats TMJ. He charges flate-rate fees of between $3000-$6000 for a set period of time--6 months or a year, for as many visits as are needed for TMJ treatment. I know I can't afford that approach.

I'm just kind of broke and frustrated right now. I can't do everything I know I need to deal with my jaw/ear issue. I want to get treatment to help in the now, but I also don't want to end up with arthritis in my jaw in the future. I'm also paying out a lot to doctors right now with some Pulmonary issues I've had flared up since November. I have 3 specialists and a PCP for that one as well.

Any advice on which directions I should consider would be extremely helpful. I have got to get a plan in place. Even if I can't afford everything right now, I want to have things in place for when I can afford them.

Thanks in advance,
MountainReader

Last edited by MountainReader; 02-24-2010 at 09:46 PM.

 
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Old 02-25-2010, 03:58 AM   #2
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Re: Looking for some advice....

Hi MountainReader

I am having TMJ treatment with a functional orthodontist, and have had my TMD symptoms for at least 15 years. I started the TMJ treatment last year.

I was told by one Maxillofacial consultant I went to see that my jaw clicks when opening because I have laxity of the joints. I have since learned that it was rubbish, and my jaw clicks because my lower jaw is incorrectly positioned and has caused my TMJ discs to displace. My treatment is repositioning my lower jaw firstly with a splint, then followed by orthodontics so that the splint can be removed while the jaw is in the new position.

Hearing loss, shoulder and neck tension are all symptoms of TMJ dysfunction, and treating the TMJ could result in improving those symptoms.
I have seen numerous massage therapists, chiropractors and osteopaths before my TMJ treatment. While it helped relieve muscular tension, the improvement was very short lived.
I would doubt that you shoulder is the cause of your TMJ problem, I think itís more likely to be the other way round.
As long as the orthodontist you mention is a functional orthodontist, then they sound good to me.
The xray shows the bone, and it also shows the position on the condyle which would determine whether the lower jaw is incorrectly positioned. Some TMJ dentists request MRI scans to show where the discs are located, and also the condition of the discs. From my experience in the UK, the costs of treatment with these dentists vary greatly. Some will be charging for parts and time as you go along to the appointments, whereas others package the whole lot, both the splint and orthodontics up as one fixed amount, which can be paid in instalments.

 
Old 02-25-2010, 06:54 AM   #3
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Re: Looking for some advice....

Hi MountainR...----Well, it's the old problem, what comes first, the chicken or the egg? IMO, with tmj, the teeth, lower jaw, or both, become the problem first, then all the muscular issues, shoulder pain, ear problems, etc. While secondary therapies like chiro, cranial sacral therapy, MT, can be very useful, they will only work short term, and will not solve the problem. They will ony act as a bandaid, a very expensive bandaid at that. IMO, you need to get a consult from someone off the ICCMo website, and make sure that they are a Functional Jaw Orthdontist, as well as a Neuromuscular dentist. There practice must consist of at least 80% tmj, and make sure that they've been doing so for at least 10 yrs. Some good docs to model credentials by are Dr. Rosemary Rojas, Dr. Clayton Chan, Dr. Martin Frashcetti, Dr. Thomas Meyer....These are all FJO's, and NM dentists. Sorry about your money situation as well. I know that's extremely frustrating. We shouldn't have to go into major debt for a health problem. IT's just not right. My bills are climbing and have reached almost 20K for my jaw. When I think about it, it makes me ill, so I just try to stay calm, and know that it will make me better in the long run. What else can you do? If you want me to research the new tmj doc you found, I would be happy to do so...Just list his or her name, or send me a line....Good luck to you! J..
Ps-----Bruxism is not just from a sleep disorder,,,a "tooth gearing problem" can lead to bruxism, and over time, worn down teeth, jaw pain, etc. ...Can you get the sleep disorder testing billed under possible apnea? What kind of ins. do you have?

Last edited by Jill 227; 02-25-2010 at 08:34 AM. Reason: forgot

 
Old 03-07-2010, 10:03 PM   #4
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Re: Looking for some advice....

Hi there Jill and Amanda. Thanks for your responses.

I'm still trying to decide what course I want to take. My ear pain and Tinnitus has been worse lately and I've been getting headaches. In the past, I'd just think sinuses, but my allergies and sinuses appear to be doing well right now. Makes me think maybe the headache is TMJ related. The decision would be much easier if money wasn't an issue. I do know that I need to be as conservative as I can in the evaluation and treatment costs and may have to do things a bit at a time as I can afford it.

I'm looking for a TMJ dentist in Northern Utah, around the Salt Lake City area. The dentists listed on the ICCMO website appear to have practices that are mostly for cosmetic dentistry. Not sure that is what I want.

Here are a few of the dentists I've researched:

Dr. Kent Johnson: Not sure of his affiliations. He does cosmetic and neuromuscualr dentistry. He practices in a prestigious area and is a clinical instrustructor at LVI.

Dr. Carl McMillan, DDS: Treated TMJ disorders for 9 years. Studied with
John W. Witzig, Terrance J. Spahl, Derek Mahoney, Donald H. Enlow, and Harold Gelb. He is a Fellow of the American Academy of Craniofacial Pain
and a member of the American Academy of Dental Sleep Medicine, International Association for Orthodontics, American Association for Functional Orthodontics and Mid American Orthodontic Society. His practice is primarily TMJ. His initial consultation is about 15-20 min.

Dr. Judson B. Wall, DDS, FAGD: He is a member of the American Dental Association, Academy of General Dentistry, Utah Dental Association, American Academy of Craniofacial Pain, International Association for Orthodontics, and the American Association for Functional Orthodontics. His practice is about 80% TMJ. His initial consultation is $195 and lasts up to an hour. This does not include any diagnostic testing, but the amount will be put towards some of the other testing costs.

Dr. James Guinn, DMD: This is the Orofacial/TMD dentist I've seen twice. I felt good about the first visit, but he didn't seem to pay a lot of attention at my second visit. Mostly wanted me to see other specialists first. His practice is by referral only and is 100% TMJ. He is certified by the American Board of Orofacial Pain and is on faculty at the U of U Medical School. He is a member of the International Myopain Society, American Academy of Cranofacial Pain, the ADA and the American Headache Society.

Myles Preble, DDS: He is a cosmetic dentist. 75% practice is TMD. A member of the American Academy of Cranofacial Pain. Nothing else is listed on his website.

Right now I'm leaning towards trying Dr. Wall or going back to Dr. Guinn one more time.

Any thoughts or other suggestions for dentists would be welcome.

I ended up at my ENT this week. He treats me for my allergies in addition to my ear and sinus issues. He gave me a low dose anti-depressant, Amitriptyline, for my ear pain and ringing. He also said we could look at a tube in my right ear that hasn't popped and be "unstuffed" since March 2009. I really think I should explore the TMJ route even more before going that route. I know I could get some temporary relief with more PT and trigger point massage, but if I spend money out on those, I won't have it to put towards a visit with a TMJ dentist.

Thanks for your support.

MountainReader

Last edited by MountainReader; 03-07-2010 at 10:20 PM.

 
Old 03-07-2010, 10:33 PM   #5
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Re: Looking for some advice....

hi MR..i remember you from the gerd forum lol...........funny how people often have more that one thing going on..unfortunalty i have tmj as well!! along with everything else .....really hope that you find a good dentist to get you better soon.
ness

 
Old 03-07-2010, 10:52 PM   #6
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Re: Looking for some advice....

Nessie,

I hope you are doing better. I know we both had the GERD flaring about the same time a while ago.

I found some interesting connections on the internet this week. It connected people with Joint Hypermobility Symdrome to other things. (Both of my shoulders have some hypermobility and I suspect my hips do too.) GERD, asthma, IBS and TMJ were all on the list. Something to do with a genetic lack of production of certain types of collegen. Some of those connections appear to be in early research though. Funny how all of those have emerged as problems for me over the years.

Tough thing about it though is that it is hard to pay to treat so many things at one time. There isn't any "easy answer" for either the TMD or GERD either. Just trial and error and looking for the best treatment we can find.

Thanks for your well-wishes.

Last edited by MountainReader; 03-07-2010 at 11:00 PM.

 
Old 03-08-2010, 06:50 PM   #7
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Re: Looking for some advice....

Mountain reader, I took Lyrica for fibromyalgia, and overnight the TMJ and reflux was gone. So many who have fibromyalgia started up with TMJ and headaches and they do end up dealing with reflux. I have no idea why that medicine helps TMJ, reflux, and so many of the other ails of fibro (just about every "itis" you can come up with), but it does. Hang out on the fibro board a bit and see if anything sounds familiar. I couldn't continue on Lyrica because of constipation so severe it was dangerous, but it sure broke the cycle of TMJ tension and the reflux. It was amazing. Take care.

Last edited by baserockermom; 03-08-2010 at 06:53 PM.

 
Old 03-10-2010, 09:44 PM   #8
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Re: Looking for some advice....

I had difficulty finding a good experienced practicioner TMJ in my area on the ICCMO website, but I found I have more choices if I added the AAOP into the mix.


I have an appointment for a consultation on the 31st with one of them.

I may be extremely naive on things here, but I'm really hoping that I won't need to go as far as braces in my treatment. I'll go that route though it it is what is determined I'd need though. I've had worsening ear pain/ringing and now have added headaches, but I still don't have direct jaw pain. I do know I have to find something that stops my bruxing though I've already lost 1/3 of my bone on the TMJ joint and hate to think how bad things could get if I lose more. I've already been put on notice I will develop arthritis at any time now.

Thanks for listening.

MountainReader

Last edited by Administrator; 03-23-2010 at 11:12 PM.

 
Old 03-10-2010, 09:54 PM   #9
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Re: Looking for some advice....

baserockermom,

Thanks for your e-mail. I hadn't ever considered the Fibromyalgia aspect before. I did some searching on the other board and while I'm not sure I fit all the criteria right now, it certainly looks like I may be heading that way. More symptoms seem to be added each year as I've gotten older. The TMJ is just my most recent. I'm confused on what type of doctor I'd see for that. Right now, I've got different specialists for everything. Still trying to find that elusive "great" tmj dentist though.

I tried the low dose Elavil my ENT prescribed for me last Friday for my ear pain. Twice now it has knocked me out so much taking it at night that I've slept through two alarms in the morning. My second back-up alarm is so obnoxiously loud that there should be no way to actually sleep through. I'm not sure this will be the answer for me.

Not sure what type of doc I'd see to ask about the Lyrica. I lost my awesome PCP several years ago when she moved to a practice that doesn't take my insurance. It has been hard to establish a reliable medical home that can actually see me when I have real more urgent issues.

Thanks again,
MountainReader

 
Old 03-17-2010, 09:33 PM   #10
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Re: Looking for some advice....

I had my first appointment with Judson Wall today to allow him to screen/review symptoms to determine if treatment is necessary.

Here is how my discussion went:
*With regards to my overall health, he said my whole body is "sick" and recommended that I seek nutritional consultation to help my body heal itself. He gave me some recommendations that included visiting a naturopathic nurse who specializes in this, taking supplements and he recommended a book I could use if I want to change on my own.
*The occulsal guard I've worn for about 9 years now to protect my teeth when I brux at night has been pushing my jaw back. Ironic that the first TMJ specialist I went to just adjusted the guard and didn't mention it. He was also concerned about the mercury amalgam stains on my guard. He is very concerned about the affects of the mercury fillings on the body. He told me to stop wearing the guard.
*My joint hyperflexibility in my ligaments is having a significant impact on my TMJ stability and is causing other health issues that interrelate (ie shoulder).
*He thinks my disks have slipped back and inward. The result is putting my jaw into a position that it is pushing into my ear. I'll be getting an MRI at a speciality center to confirm this.
*I go back next for a "Records" appointment. At this appointment they will do a thorough assment and diagnosis.


Right now he is anticipating I'll need a lower bumpy appliance for about 6 mos. He said after that we would discuss Phase II to keep my jaw in place which may include orthodontics, restoring some teeth (my molars have been ground flat) or continuation of use of appliance.

He was ready to start all this next week but I needed to schedule out a couple weeks for financial reasons. As much as I want to rush into treatment, I can't financially, but I do feel that I've found a dentist who would do a good job with my treatment. At least there is hope there. I go back in early April for my records appointment.

Last edited by Administrator; 03-23-2010 at 11:14 PM.

 
Old 03-18-2010, 05:41 AM   #11
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Re: Looking for some advice....

Hi MountainReader,

What is the book the dentist recommended so that you could sort out nutritional problems on your own?

 
Old 03-18-2010, 08:24 AM   #12
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Re: Looking for some advice....

The book is called Healing is Voltage by Jerry Tennant, M.D.

It is really about gaining the proper balance back into your body.

Last edited by Administrator; 03-23-2010 at 11:14 PM.

 
Old 04-05-2010, 08:46 PM   #13
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Re: Looking for some advice....

I had my "Records" appointment today with my new TMJ Dentist. This is a second opinion for me. The Records Appointment consisted of 2.75 hours of testing. I go back next week for a 1 hour appointment to review the results, discuss my plan of action and sign a financial agreement.

Many of the tests I anticipated, but some of them were a surprise to me. They took a series of about 15 photos of me (in bare feet) in various positions, including in front of a posture board, and close-ups of my teeth front and back. They had 4 computers with various tests and types of software set up within feet of each other. They took 22 digital x-rays and a 3-D CT scan. I also had various digital movement scans. They took tons of measurements of my jaw and neck movements. They took a couple bite registrations and dual molds of my teeth. The things that surprised me: all of the palpitations (he didn't even finish all of them because so many registered with level 3 pain), the neurological assessments, the breathing tests both oral and nasal, sitting & standing blood pressure readings, the reflex tests, and the sensory tests--smell, taste, hearing. I have a couple more tests on my records review appointment as well. The only thing he gave me feedback on today was that my muscles were very "unhappy".

I'd be interested to hear how this compares to others who have had appointments. My first TMJ dentist just did the 3-D scan and had me bite on papers. Very little else. He had tons of qualifications too.

So far, I'm liking this TMJ dentist a lot more than my first. I have high hopes for my follow-up appointment. I fully expect I'll be getting the bumpy orthotic pretty soon. After 13 months of ear pain and congestion, I'm excited that I may be on my way to finding some relief.

Last edited by MountainReader; 04-07-2010 at 09:44 PM. Reason: forgot something

 
Old 04-07-2010, 02:46 PM   #14
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Re: Looking for some advice....

Wow, I've never had a work up like that from anybody and I've been to numerous places including the Cleveland Clinic.

 
Old 04-14-2010, 09:58 PM   #15
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Re: Looking for some advice....

Had my records review appointment today with my new TMJ/Orofacial Pain Specialist to review all my tests from last week. We discussed his findings and treatment recommendations. I left with a folder with about 10 pictures he took of me that demonstrate his findings and 2 reports on the findings and recommendations. Now I need to figure out the financing.

Seems to me he is taking a much more holistic approach than many other TMD Specialists. His treatment recommendations aren't just about the teeth and jaw. I'd appreciate getting your take on things.

Some findings:

*My condyles are slipping off the backside of the discs.
*I have coronoid process hyperplasia. This is affected by hyperactivity of the temporalis muscle.
*My left side is much worse than the right. (Ironic because my ear pain and muscle pain are horrible on the right side.)
*My lower jaw is inproperly positioned in relation to my cranium.
*Confirmed TMD pain by palpatations, headaches and joint pain.
*Deflection of lower jaw to right by 3mm.
*I have poor head posture.
*I have significant cranial distortions This has been made worse by the bruxism.
*I have signs of Obstructive Sleep Apnea.
*I have signs of adrenal fatigue which may be caused by/aggrevated by the TMD stress over time.
*I need to get the metal removed from my mouth because they disrupt the electrical currents in the body.
*I need to improve my diet/nutrition.
*Suspects that I incurred TMJ ligament damage from intubation during surgeries I had in 2008. That may have caused/aggrevated my condition. (I started having pain in March of 2009.)

Treatment Recommendations:

*Daytime CR Mandibular Repositioner (the "bumpy" orthotic).
*Lab-fabricated NTI-Lower for nighttime to prevent clenching/grinding.
*Upper ALF appliance to relieve cranial distortions/tension.
*Take supplements to assist in rebuilding damaged tissues. (Cholorphyll Complex, Zeel, Juice Plus orchard/garden, Joint Complex)
*Work on natural diet.
*Nasal and ear ozone/oxygen sufflation to assist in joint rehabilitation.
*Replace "defective" mercury fillings.
*Prolotherapy injections and assisted laser therapy.
*Cranial Manipulation/ physical therapy.
*NUCCA Chiropractic for 1st and 2nd vertabre.
*Ultrasound and microcurrent treatments.
*Pursue treatment for sleep apnea.

He said he hasn't had a patient who has needed the daytime and nighttime orthotics and the ALF all at the same time before. I'd be interested to hear if anyone else has used this approach.

Anyone had success with Prolotherapy? What did you think?

Anyone tried the nasal and ear ozone/oxygen sufflation? What kind of results did you have?

I need to figure out if it is really worth my money to try to pursue all of the other recommendations. I'd be happy to just "go for it" with all recommendations, but budget does become an issue. This is only Phase 1. Then in about 6-8 months, I have to find a way to pay for Phase II. Want to take it a step at a time right now to get through it.

Last edited by MountainReader; 04-14-2010 at 10:00 PM.

 
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