TMJ 'dysfunction' - Health implications

The following is Emmas journey so far, starting in December 2011 with Dr Amir.

I will be cutting and pasting from another forum so apologies if this appears a little disjointed.

Emma started treatment with Dr Amir firstly by no more than a consultation on Tuesday 15th November.

We visited Dr Amir in South London and spent a couple of hours with him discussing his theories and how he feels Emma's body was being affected. It was apparent quite quickly that Emma has quite substantial underdevelopment of the upper and lower jaws along with misaligned teeth. She had been fitted with a removable brace some 25 years ago to address this misalignment, the original treatment now needs to be corrected so Emma's upper and lower jaws can be coaxed into the position that they should be.

At this stage I will explain, this is not a quick fix, it is going to take some considerable months and possibly a couple of years to move everything around for Emma because of the extent of her problem, so bear with us.

We left Amir's surgery that evening after the consultation a little shell shocked. This theory had come completely out of left field and was being accompanied by the usual thoughts. Is this too good to be true? If this is so effective why has it been overlooked? Can it really be something as fundamental as this?

Well we've since had conversations with other patients of Amir’s (some with MS others with different ailments), some who we've met coming in and out of the surgery itself. There isn't a bad word and without exception they have all described the treatment as life changing.

We figure at this stage, having had CCSVI treatment which had great results for a few months then regressed that we're at a point where there aren't any other options. Traditional medicine has pretty much given up on "MS" it simply doesn't understand what it is.

Unless you're keen on pumping your body full of drugs, many of which the drug companies don't really know how they work, then we're pretty much left to what falls under the heading of "alternative medicine". Unfortunately this phrase seems to have a bit of stigma as it's associated with some crackpot ideas.

Before we made our final decision I decided to have a conversation with the Doctor and Surgeon in Edinburgh to get their views of where they are with CCSVI and if they'd ever heard of Amir's theories. To my surprise they had and were actively pursuing information and treatment packages on Jaw misalignment, they were quite surprised when I provided them with Amir's details and told them he'd been working on this for 20 years. It was MS patients that had sought him out rather than the other way around.

We’d already decided we were going ahead with this treatment. Amongst other things Emma had been suffering terrible jaw pain in the TMJ for the preceding month (it’s this that lead us down the jaw road) and it was reaching a point where the pain was so great she wasn’t eating.
Emma had her first appointment on Saturday 3rd December. Amir had taken teeth impressions of upper and lower at the consultation in case we decided to proceed. So on the Saturday Emma’s first small brace was ready, to ease her into the treatment.
X-Rays were taken of the jaw and teeth and looking at these on the computer it was clearly obvious where Emma’s problem was (at least with her jaw). The lower brace was fitted and we made an appointment for the following Saturday, 10th December.

10th December, Amir explained he usually eases in new patients for the first few weeks with a simple appliance but this would be a waste of time with Emma, she needs a lot of realignment so it was straight in at the deep end.
Upper and lower appliances were fitted, a real mouthful! With instructions on how and when to adjust them. Another appointment made for next Saturday.

So how has Emma got on?

Well it’s clearly too early to be drawing any conclusions yet, but after only a week, Emma’s TMJ pain has subsided from painful – unable to eat, through uncomfortable – soup and soft bread only, to bearable starting to begin to eat normally but gingerly.

*NOTE* I will not got into great detail about the braces/appliances that Emma has fitted, it’s a little bit pointless as these are made specifically for each patient weekly/monthly and will bear little or no resemblance to treatment for another individual. This really is bespoke treatment that evolves over time.

There are no extractions of teeth in this treatment, it is not comfortable, it will not give you overnight results (well it may do but it’s unusual). So why did we do it?

We figure if nothing else, this will leave Emma with no jaw pain and a lovely set of straight teeth and jaws with anything else a bonus. We are hopeful it is going to relieve some of Emma’s “MS” symptoms and having spoken to other MS patients who have seen and are seeing Amir, none of them have a bad word to say. Time will tell and I’ll update this thread with details of Emma’s progression each time there is something worth an update.

original post date = 18/Dec/2011

Emma is a month on from our initial consultation with Amir (and into her third week with applicances fitted), how has the theory worked with Emma?

It wasn't until 3rd December that Emma had a single lower brace fitted, up until this point she had been suffering severe pain of the TMJ on the right side of her face. It had become so chronic she was now unable to bite or chew and was on a soup only diet. The first lower brace started to alleviate this pain almost immediately, it took four to five days change from severe pain to a strong ache.

During this period Emma was also suffering debilitating Nueralgic pain to the forearm, hand, calf and foot all on her left side, to a degree that only valium and lidocain impregnated plasters were enabling her to sleep.

After the fitment of the lower brace this will still present, but started to ease.

10th December (a Saturday) we visited Amir again, Emma was fitted with more substantial (removeable) appliances for her upper and lower jaws. I'm provided with a small "key" and given insturctions on how to adjust each brace for size and frequency (again - this is bespoke treatment for each individual so the specifics are not relevant to everyone).

That night the Neuralic pain ceased altogether, the TMJ pain which had subsided during the previous week was now a very dull ache rather than pain, that over the next 7 days disappeared altogether.

On Thursday and Friday evenings (15th & 16th) Emmas Neuralgic pain returned, not as ferocious as pre brace but there nontheless.

Saturday 17th December we visited Amir and he made some larger adjustments to Emma's brace over and above the small ones I make daily. Emma will now continue with this brace until her next appointment on 3rd January.

During the appoinment Amir commented that Emma's left eye was far more stable (it dances around of it's own accord especially when Emma looks to the left), she hadn't said anything to me about this over the previous week so we discuseed it and Emma then said she'd been able to watch TV without her glasses and when in the car travelling no longer required the use of an eye patch on her left eye to stop motion sickness and double vision. The last time these symptoms were alleviated were in the 12 weeks post CCSVI procedure - but they slowly returned after that.

The neuralgic pain had again subsided on Saturday evening post brace adjustment it hadn't completely gone altogether but was substantially reduced over Thursday and Friday evenings.

Physical changes, Emma is more stable on her feet on the days of adjustment, She walk out of Amir surgery with more poise and pace then when she walks in, every time. The increments are small but they are there, this is really only something that will be quantifiable with hindsight some 3 to 6 months into treatment.

Next update early January unless there is anything of note worth posting in between.

Original post Date 20/Dec/2011

Unexpected update.

We had cause to visit Dr Amir this morning after only a few days, Emma had damage to her lower brace and it needed replacement. As a result she spent last night without either brace fitted (the upper is very uncomfortable without the lower fitted - they work together). She had a pretty rough night.

As we were sat in the waiting room for the technician to complete the brace Emma started to get Neuralgic pain in her left hand and asked me to grab some medicated pads from the car. We were chatting to Dr Amir at the time, he asked Emma not to put the pads on but to come straight into the surgery where the new brace had just been finished.

Dr Amir fitted both Upper and lower braces and aligned Emma's jaws as he wanted. Almost immediately the neuralgic pain subsided.

The explanation is that a nerve in the upper spine/neck area is being subjected to pressure, this was transmitting pain further down the nerve network which was being experienced in Emma's hand. In much the same way a trapped Sciatic nerve in the lower back manifests itself with leg pain.

It was quite something to see this, I've spent many a night with Emma crying in pain as we seemed unable to numb the neuralgic pain with anything other than Valium and medicated pads.

One month update.- (dated 03/Jan/2012)

It's exactly a month to the day that Emma's first appliances were installed. We went to see Dr Amir today for a check up and things are starting to move in Emma's jaw.

Already her facial features have changed, she has better skin colour, the Neuralgic pain that was so debilitating has not gone completely but has been reduced in frequency and severity by 70% to 80% and is reducing further over time. The jaw pain has gone completely.

Emma's left eye used to have a life of it's own all the time, this is now stable unless she is particularly tired and pushing the boundaries of her stamina levels. Motion sickness has almost entirely gone along with extreme sensitivity to electric light, particularly flourescent. There is still a sensitivity to light but much reduced.

No physical improvements yet to muscle strength, gait, balance etc Emma started off this treatment at EDSS 6.5 and remains the same. We do not expect to see any improvements in this area in the short term but do expect significant improvements long term (18 months plus).

This is the long game now, it's like a three dimensional logical problem. Certain parts have to move before others before everything starts to slot in to place. Unlike CCSVI this is the complete opposite to immediate improvements, much more slow gradual permanent improvements.

I asked Dr Amir today at what point would he expect to address Emma's Atlas and upper spine. His response was not for some time yet (months) as there is still quite a way to go with Emma's jaw before it's even worth looking at. Even at that point it may well have corrected itself.

That's the interesting bit, something that should be considered before undertaking any upper cervical adjustment. Why is it not straight to start with?

There's no point adjusting the upper spine if the cause of it's misalignment is not addressed beforehand, otherwise all you will do is continually adjust a vertebra that will simply move back to where it was.

Next appointment is next Tuesday (10th Feb 2012) where Emma will be fitted with new braces as we've now reached the limit of adjustment in the current ones and some slight alterations need to be made.

Original post 13/Jan/2012

Brief update.

Emma was fitted for new upper and lower appliances that were installed on Tuesday 10th January.

Neuralgic pain had started to creep back in again (with the old appliances) and was becoming more than uncomfortable. These were now 37-38 days old and had reached the limit of adjustment.

With new braces installed on Tuesday all neuralgic pain has once again ceased. It's taken a couple of days for Emma to get some degree of comfort (comfort being relative here!) with these new appliances as they have some extra bits and pieces attached over the old ones.

Next appointment 14 days for a check up to see how things are moving.

Original post date 02/Feb/2012

I took Emma to see Dr Amir today to collect a new lower appliance and have her atlas checked. It's almost two months to the day that Emma had her first appliance fitted and at that time Dr Amir checked her atlas and found it was out by a noticeable margin. Prior to seeing Dr Amir Emma had been to a Chiropractor and each visit needed the atlas realigning, so we new this was out.

Emma's new lower appliance was fitted and is a far better fit than the one it replaced. These appliances are designed to create the gaps required between the teeth to enable Dr Amir to use more traditional fixed appliances along with his own special creations to move the teeth into the appropriate position as well as move the jaw as much as possible. We have an appointment for two weeks today which should be for the fitment of lower fixed braces.

After this Margaret took Emma through to the 4D "scanning" machine (Deers 4D Formetric mentioned in his other thread). We'd not been on this before so this was all new. After a false start, Emma had her photograph taken and interpreted by the machine which showed only slight hip drop of 3 degrees to the right and that was about it, quite a surprise actually. It was then through to the Chiro couch to check and realign Emma's atlas. It didn't need it, to our surprise the braces had done it for us, the Atlas was absolutely spot on, no need for adjustment! Amir was delighted and said he's finding that maybe as many as 25% of patients correct themselves after brace therapy.

So I'm afraid I can't fill you in on details of how the atlas is adjusted as Emma's body did it itself.

We asked Dr Amir when Emma would expect to see any physical improvements, he suggested these would start to develop as the realignment work continues. Next visit for us Thursday 16th 1pm.

Is it helping? Are we noticing any difference?

Yes, it's helping, Neuralgic pain is now almost completely eradicated, Emma only gets occasional pins and needle tingles when her braces are out. Compared to the debilitating pain she was suffering this is a vast improvement. Emma has yet to have any physical gait improvements or stamina, these are expected to come with time with continued treatment. At only two months in, Dr Amir is still arranging the teeth/jaw into a position that will allow further adjustments and realignments to be made.

We're now at 3 months treatment for Emma with Dr Amir.

Two weeks ago Emma had an appointment in Putney to see how the appliances were treating Emma's Jaw and Teeth. Leading up to this appointment Emma was getting a return of the neuralgic pain she'd been suffering.

Original post date 01/Mar/2012

This has now become an indicator that a new appliance is required due to the existing one having reached the limit of adjustment or limit of treatment for that particular device.

Emma is effectively housebound other than the occasions I take her anywhere she wants to go. To that end she doesn't have to lead a "normal" life, working, communicating, interacting with other people. This has it's upsides and downsides. The downside obviously being depression from such an insular life, the upside meaning prolonged treatment is easier with oral appliances if you're not required to talk to anyone.

So, Emma has progressed nicely according to Dr Amir. Two weeks ago Emma was fitted with more traditional upper and lower fixed braces (with the usual tweaks and custom parts we now expect of DrAmir) for this next part of her treatment. Within a day the neuralgic pain had again stopped and two weeks on apart from a slight "twinge" every now and again there's been no return.

Emma has not noticed any major physical improvements yet, but then in reality we don't expect any. 15 years of MS isn't going to be reversed in 3 months. Her eyesight has pretty much stabilised though which means travelling anywhere is now a little more comfortable in a car, mainly due to motion sickness being reduced.

original post 10/Apr/2012

April Update.

Today Emma had a check up with Dr Amir, some minor adjustments were made to the existing braces and an impression made to provide a new removable upper brace to be used in conjunction with the fixed upper and lower (at night). We collect that next week.

Neuralgic pain now pretty much eradicated.

Emma is starting to show signs of a reduction in fatigue levels. The daily afternoon nap is now only occasional. She's starting to get up and hour or so in the mornings before she used to and going to bed a little later than normal without any ill effect.

Also it is worth noting that since seeing Dr Amir, there has been no progression or worsening of any MS symptom at all.

original post date 22/Aug/2012

It's been a while since I posted an update so here we are approaching the end of August.

The two major improvements provided by jaw realignment with Emma have remained, namely a complete eradication of neuropathic/neuralgic pain and a distinct reduction in fatigue.

Walking and gait has not improved, however, that's no surprise. Emma is now 15 years into MS and has very obvious muscle atrophy.

This week we started a course of physiotherapy to build Emma's muscle structure back up and teach her to walk correctly again, not with splayed feet and years of "compensations" and bad habits.

6 months ago the thought of physio would have been absurd, Emma was only months away from permanent wheelchair use.

It's all good. We are at 9 months into treatment with Dr Amir and would not consider stopping.

What you need to understand about Dr Amir's treatment is that he fixes a physical problem, often skeletal, that interacts with nerves and muscles. His treatment is only a third of the answer, the other two thirds is then up to you. Amir has given Emma the ability to rehabilitate herself.

Think of it like repairing a broken arm, Dr Amir is the surgeon that puts it all back where it should be. It's then up to you to exercise, repair and rebuild the tissue back to health. It's no different with Dr Amir. Dr Amir will provide breathing, swallowing and other exercises that are as important as his treatment, without the combined package it's not going to help.

That's also why different patients seem to have faster/slower recoveries. It is like a physical rehabilitation after a car accident, the more serious the damage the longer it takes to repair - so the longer you've had "MS" the longer it takes you to get it all back to normality.