More on Izzy's horrors that lead to a death wish....

[Izzy_*now*]

I have dental problems from the tremors and gnashing of teeth, involuntary of course (although there are times I would GNASH them now at the dentists I am dealing with.)

The neurological injury to my upper back has not been addressed properly, yet………..the one when the Dr. sent me to the Neurologist and the Neurologist wrote back that it appeared to him that I was “making it up”. 

Time goes by in getting referrals to specialists…4 months between those two….then I asked my doctor to refer me to a physiatrist and he said I was over-doctoring……so my lawyer stepped in to get my an appointment.

Meanwhile time is passing and now my jaw and teeth are out of alignment, by small amounts but enough that *I* know it and my tongue senses it and since last June it has “worried” at small glitches of crowding teeth, and wider gaps elsewhere, to death and developed 2 calluses (on my tongue) plus have but one place to chew, comfortably, and often bite my tongue, while sometimes my upper fronts land BEHIND my lower teeth. Is anybody listening to me?

I have stuffed and smoothed things with dental wax while getting appointments, and with my own dentist….he did the cleaning,, the x-rays etc all first and then could not seem to understand what my problem was, as he had no impressions of my teeth.  4 visits $417.60

Nevertheless, I went to a Cosmetic dentist with this problem, hoping he could make teeth guards, or something, (while I was awaiting the physiatrist appointment, finally have one now for NOVEMER 23--if I said it was Urgent, it would cost $8.000.00...wait my turn and it’s just $325.00.) and after telling my whole history, I ended up with x-rays and a cleaning,  1 visit $319.80

I have written to my own dentist as he is not one to phone--- from experience right after the accident--requires a letter--so it is written just now.

I did call the cosmetic dentist, as he and his harem (seemed like a cult to me) went about doing his or her own thing without addressing the “problem”, just discussing whatever lingo over my head to each other, as though I had never been to a dentist in my life. Did x-rays, did cleaning, and made 2 more appointments for ”junk” not related to what is bothering me. I finally called today and the 1st girl said the 2nd girl would call back-- just have their own little niche. (Still awaiting the call and she is one that saw me in a state of the shakes with my teeth clashing..)

I was out of orthodontic wax, as was the drug store and the only way to get to sleep was to stuff dental floss in the gaps and crowded areas….so that when my tongue hit string, it moved on and finally gave up. ---string wound in and out and between and all across the bottom to let my tongue rest, with the ends hasnging out so I didn't swallow them-- then pasted in gum since. ..have used 6 containers of wax…so comfortable I forget it is there and end up eating a meal and my wax as well OMG!

================
If I don’t have something done, my teeth and tongue will drive me crazy. I’d have something done, as they would do, as final, but I am still gnashing and could ruin new work. What I want is a guard for the backs of my teeth, upper and lower, to get me through until I see the Physiatrist and either he settles the nerve problem, or all this will be gone…9 more months. Gnashing is slowing down  to a clattering but there are still misalignments in my teeth and jaw.

Do I make sense? Why can none of them step ‘outside his/her personal box/job” and understand me? Am I talking Swahili or Piglatin?

I asked the cosmetic place…if I came in with a tooth just hanging from being slugged would I still have to go through the x-rays and a cleaning before the “injury” was addressed , and she said “Yes!”

I weep for these poor souls who have no brains!

I hope that group doesn't include me!

Love
Izzy

[teartracks]

Dearest Iz,

I read your post and I listened!  We say it so often to one another here - but I AM so sorry for the multitude of problems your teeth are causing.  You're amazing! 

I can't do much more than say that and make a suggestion or two.  I'd lose the phone number of that cosmetic crowd.  I think if there is such a thing, you should see a medical doctor who is also a dentist or vice versa.  Your symptoms sound extraordinarily complex.  The last thing you need is a dentist untrained in what you're experiencing and one  who might create more problems. 

In the meantime, I hope things lighten up for you and that you get that mouth guard.  They aren't like ones made specifically for your mouth, but the pharmacy has a couple of versions of mouth guards that might get you through until you get through to the dentist/doctor.

Love you,

tt





 

[Hopalong]

I hope you will cut and paste from this exact post, Izz...

...just in case the straightforward way you describe it here is different from the way you try to write a letter to a doctor/dentist.

Because it's CLEAR.

You got brains.

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

just

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

I hate what you are going through.

Hops

[sKePTiKal]

Poor Iz...

why is it the medical folk aren't trained to THINK for themselves? to hear what it is you're saying and put 2 & 2 together and keep LOOKING? They learn one set of diagnosis parameters... and well, that's all it could be.

Unrelieved anxiety can cause that tooth grinding you're talking about. I suffered through this for years; one of my Ds also. They know this, too - and I'll bet that's exactly what they're thinking in your case. Un-PC speak: they think it's all in your head... RIGHT... dorks.

Look, I know you've got some time to research. See what you can find online about chi gong, and different exercises. You'll want to find exercises that get chi flowing from your toes to the top of your head. You may/may not be able to find ways to do the simple (and maybe easier than physical therapy) exercises on the lower half of your body... I'm thinking you and your dedicated therapist will figure out a way.

I mention this because it works on calming and balancing the nervous system - which you have said is really the root of all the other problems, and which I tend to think you're right about. Chi gong and tai chi are often part of chronic pain relief and management, too. The most powerful "exercises" are the various forms of "standing meditation", which maybe you can do with help. All you do is place your feet shoulder width apart and stand - sometimes there are added in positions for the arms but you can simply let your arms relax and just stand. Start with really short time frames - 1 minute, then 2... if you can get to 5 minutes, you're really good at this! (Better than a lot of people). There are lots of exercises you can do sitting, too that will loosen up your shoulders and back - and also "connect" those nerves again to muscles and bones via the brain in normal, natural ways. Even with that missing hip joint, I'll bet!

I think that for nerve issues - especially ones that seem to be multiplying like yours are - doing some (any kind and amount) of these kind of "internal energy massage" exercises that are designed to massage nerve endings... might be just the ticket for you. It should feel good - not strenuous at all - no weird positions like yoga... just simple little movements.

my teacher worked with lots of folks who had "extra challenges" physically... and they were very enthusiastic about the benefits. I remember watching a blind man doing chi gong... and then going on to work through the solo tai chi form. One has to wonder how different it was for him, without the visual cues and references - new students invariably watch more advanced students to know where they are in the 103 position sequence! That's one way they learn; I guess he had to feel everything from within himself. His balance was way better than mine!

Anyway - this might give you something that will WORK at least a little bit (I hope so anyway) until you finally get to November. Hang in there!

[Izzy_*now*]

YA! 3:00 in the AM

thanks tt. I will check out the pharmacy.

So a chat with another one of the girls from the cosmetic dentist's led me nowhere. She admitted she understood what I was saying, and needing, but mouthguards are all one piece and are for nighttime. Gimmee a break! I could scream. There is more than one way to skin a cat. I told her that back in the '50s when I was having orthodontic work, I had a band run behind my lower teeth, anchored at both ends. Now that would do nicely, but she didn't agree, likely based on the fact that she doesn't know.

Zosia is her name and she is going to speak to the dentist about it, then call me.  I am going to print my letter to the other Dentist and see what happens....a combination of the above and another I had written first. A copy of same will go to my lawyer.

Meanwhile I woke up to go to the bathroom, back to bed and the wheels were turning. I was just lying there with my hands loosely on my chest and my nose began to jump up and down, and my teeth clattered. What brought that on???? I knew I had just done something, but what? Then I remembered. My first two fingers on each hand were loosely linked and I had pressed, not heavily, on right "tommy tall" finger with a left finger. Things "took off". Then I pressed on my right index finger with a left finger and everything stopped. I tried again and it works every time, as long as the right fingers are loosely bent. (I played for a bit then got up!)

Weird!! Just weird enough that people might not believe it. Especially doctors who have never heard of/saw this before, eh?

Then I switched and lightly pressed my left fingers and it works and stops the very same way.

Well PR, there you are, swingin on a star, swiggin' from a jar....

Now that sounds VERY interesting and my therapist is good. I will check this out, mark some spots, arrive at a conclusion, clue her in and we will work together. She teaches yoga now. My paying her for these last 8 months gave her the fee to join, learn the spiel and she is really good at that too.

I know what you mean about the medical profession, or many other areas. Just because one is on an assembly line and installs the ashtray into a car, doesn't mean he can build a whole car.

thanks gals
Love
Izzy

[lighter]

I do not think I can put enough emphasis on the fact that your doctors have chosen to deny and minimize your symptoms problems bc they don't know how to fix you.

They pretty much suck, and you have to be a liar in order for them to feel good about dismissing you, empty handed.

What lovely, overwhelmed men they must be in their personal lives.

I don't know how you've remained so calm throughout this ordeal, Izzy.  I would have been crawling up on desks, asking for supervisors, probably being escorted out by incompetent security gaurds.

This debacle.....

This travesty, as you know the guy who hit you has insurance and insurance companies have deep pockets and those pockets are meant to pay claims for people

just

like

you.

It's wrong, and once again I find myself fearing for everyone who works in insurance.....

even the people who clean the offices.

Izzy, excuse the rant please,  I know it doesn't help.  I know there are channels you must travel, years that must pass, and little you can do to get the help you need, but jeez... it's just so  unfair.

Lighter

[sKePTiKal]

The fact that you can start/stop some of the strange tremors with your fingers... is a HUGE clue, Izzy. Does it still work when you're sitting up?

What happens, if you put your hands on your knees and lightly rub them in circles - go outside first, then inside? Does it just feel good and little warmer? Or does something else start to twitch? What twitches?

What happens if you massage with some pressure (firm, but not hard) with your thumb on the opposite arm, just below the elbow (just a little toward the inside)? This is an acupressure point. There's another one in the web of skin/muscle between your thumb and index finger.

More research topics - sympathetic and parasympathetic nervous system... and mind-body connection. I don't know if you caught my "momentary immersion into neuroscience" phase... but because of MIL's strokes and my own brain issues and how I was affected by trauma and the FOO... I dove into trying to learn more about how our brains really process physical and emotional sensations... trying to see if I could see and feel, how it's all connected. Well - it's really hard to look at those basic functions of ourselves. I mean I can imagine blood flowing through my veins... but really be aware of it? I'd be kidding myself. But maybe there is actually some benefit to that, too.

So where I'm going with this... the two nervous systems are part of that basic physical management that the brain does like making arteries contract to push blood around the body. I'm not sure now which is which... but I think the sympathetic nervous system sends "active" messages to the brain and the para-sympathetic sends "relax - calm" messages to the brain... and the brain can also reverse this communication, say in a meditation state... or in chi gong/tai chi movements.

Something else - another clue - I remember they gave you some strong drugs after the accident; morphine maybe? And I'm sure with the multiple surgeries they also knocked you out with anasthesia, right? MIL absolutely flatly refused to ever be "knocked out" again, after having an injection in her vocal cords, to enable her voice to work right. She said it "messed up her brain"... how it worked... in ways that she couldn't put right just by waking up. Little by litte, I managed to figure out she meant it messed up how her brain integrated with her body and managed some physical movement. I wonder... and realize I'm just completely speculating here... I wonder if while waking up from the surgery they also gave you really strong pain meds, sort of overlapping... I wonder if that didn't just "scramble" some of your neuro-wiring - the connections from the nervous systems... you were (maybe still are?) on pretty strong pain meds? This kind of scramble can be put right again... and what you & Karla have done lately - the amount of progress and relief you've gotten leads me to believe you two might be able to figure out the twitching, too.

You know how they've "discovered" that each person is so genetically unique that they've begun working on customizing drugs specifically for one's DNA? That's a good thing, in the long run, I think. But when it comes to the brain - and any drug that affects the brain - including pain meds... I don't think there's enough collaborative research going on between the neuro guys... and the other docs... for these experts and geniuses to understand that it's a 100% guarantee that each person's brain is going to react differently and that drugs, dosages, etc simply can't be "one size fits all". Not without severe consequences (of the unintended and unknown type) for some individuals. And then there are weirdos like me - who can react the complete opposite from the effect a drug has on "most" people - sometimes; not all the time... and even with the same drug.

Anyway - I'm back to working on these mind-body connections again. For a completely different reason... but I'm sure to run across some info that might help in your situation, so I'll send you links or whatever. If you do get around to looking up some of this stuff, please share back with me! There's just way too much info for one person to find, collect, collate and make sense of these days.

[Izzy_*now*]

thanks lighter,

I need your rant so I can keep sounding sane. I believe you, as I said in my post. not only is the school system at an early age not as good as before (dumbing down the young kids) the professionals are missing something as well.

I try to stay calm so that I am not yelling and can therefore just be dismissed on that basis.  Being alone also helps me stay calmer, as there is no one round to b*itch to! Karla hears the details in a calm voice, to see if she has another option for me.

and PR
Yes also when i am sitting up. This new stuff with my arms is not so new, i am thinking. I know I said these things before, but as reminders, I went into the tremors right on the roadside, after being knocked over. (I thought it was the 'death dance'....one final display before passing on.)

I was on morphine and out for 2 days before surgery. That is what gave me the hallucinatory dreams, and with eyes open when sleeping I saw the personnel quietly walking around whispering, made up my own dialogue, and it was all about someone trying to kill me. I can still relate the content of those dreams 2 years later and by tomorrow will have forgotten last night's main attraction. I confused days and nights and escaped the hospital, in real life, believing that was the only way to save my life. I was on codeine by this time, as well.

When the Insurance Co. offered a trapeze for my bed at home, I said, "No"...thinking i didn't want my bedroom looking like a hospital room, but sitting up was difficult with trying to not move my leg, so I gave in when she said it would ease the pain. I've mentoined that using that trapeze one arm at  a time, out of bed and back in, i was pullin on the upper back, tips of the Rods installed in 1969, then 'pop' pain. I  stopped using the trapeze but the pain never stopped, pain and or just pressure lying on my back now set the tremors going agin and they have never stopped. ...mainly in my face, cheeks, nose, lips and teeth......late on came the shoulder shakes....but the also came when I attempted to move my injured leg...still do. Try to lift my left leg off the footrest and my my nose quivers and teeth clack. My incision is still itchy and tender.


So that was all taking place by June 2009.

With last night's discovery, there is more, as you suggested, I can touch any part of my clavicle to shoulder and down my arm to elbow (stopped there a few weeks back) and now on down to my fingertips, and yes, the web in between my thumb and forefinger. Any part above the Rod tips about mid shoulder blades and up is affected. Now just circling my thumb and forefinger sets up milder teeth jumping (up and down...no grinding) and makes me think of an electrical connection. (Nothing with my knees.) The only part 'not affected' is touching the right side of my head.

Since the drugs, I have had difficulty remembering certain words I want to use. I just draw a blank, and it bugs the hell out of me that someone will try to insert the word I want and are taking the wrong route. (Karla lets me explain in a paragraph and then tells me the word, or it might come to me 2 days later.) I expect also that the left side of my head hit the pavement, as the left arm of my glasses was bent. I 'blacked out' before I was toppled, i.e. the last I remember is trying to shove the car back up its driveway,  then black, and came to in pain

I suppose we have to consider which details really matter for clues.

Oh boy, sleepy again

tt

I feel my brain "flowing back and forth", and my eyes become droopy and if I type much longer I wil be asleep sitting up-- so I head to bed for a nap.

thanks all
xx
izzy

[teartracks]

Izzy,

What innovative things you come up with to tell your brain what to do with your body.  You would make a great 'out of the box' researcher. 

I'm still trying to figure a way you can get a mouth guard to get some relief.  Would it make sense to call a sporting goods store.  They must stock a version or two, since some sports require them.  Just a thought...

Love,

tt

 

[Lollie]

Hi, Izzy.

Here's a practical solution. I did this myself when my [expletive] doctors and [expletive] dentists did nothing for my TMJ. It should cost you less than 5 bucks.

At most sporting goods stores, you can pick up mouthgaurds that you can mold to your own teeth. They're for athletes. You just dip the mouthgaurd in hot water, wait a few seconds, put it in your mouth and bite down for a few seconds to mold it. Then you put the guard in cold water to set it. Viola! A custom-made mouthguard.

It may not be a solution to what's causing the real problem, but it might give you some relief. And if it doesn't, you're only out a few dollars.


Wishing you well,
Lollie

[bearwithme]

Hi Izzy,
I've been reading your posts here and I can't believe the plethora of problems you are having and the frustration that encircles your quest to get relief.  I hope you are able to find that mouth guard thingy and I hope you can catch a break with these medical "geniuses."  I have always had faith in the medical community but oftentimes I hear about conditions that doctors can't figure out and they're like "hm, oh well....we don't know what it is" and then they move on.  Frustrating to no end.
 
How are you today?  Did you get any answers?  I'll be interested in what that specialist says about all this but in the meantime, I hope you can sleep.  The finger thing is so amazing!  I can't believe you can do that, that is huge like Phoenix said.

I also hate what you are dealing with.

hugs.

Bear

[Izzy_*now*]

Hi Lollie

Thank you.

You gals who think out of the box, while I was stranded in mire of only doctors and dentists. We'll beat them yet!!!

Hearing from all sides paints another picture and if I can heal my tongue even if the clattering is still present in some way then that's a battle won, then on to the next, etc until I've won the war.

As stated before the majority of the more violent gnashing came with the unbearable pain but over 2 years has lightened up now, but still is there leaving a trail of broken dreams gappy teeth behind to be fixed when I have the clattring stopped.

Such great input!

xx
Izzy

[Izzy_*now*]

hi bear

Did I get any sleep? hahaha-- been in and out of bed all day catching up and never got out to store or post box.. I have spells of that. Will do better tomorrow unless I am up all night now!

Yes! Who could believe a broken leg would lead to all this. but it was negligence on the part of the driver's Insurance Co. from the get-go---just a broken leg.... so was minimized and all has been minimized since.

Yes! The finger thingy....it is like opening and closing an electrical circuit., flipping a switch-- just circling thumb and forefinger on either/both hand and the clatter starts....open the circle and the clattering stops.  This was just a new discovery simplifying what happened last night. (Maybe I should see an electrician as opposed to a doctor/dentist.)

Btw, I meant to mention about my chat with Zosia at cosmetic dentist. She thought a physiatrist was psychatrist until I explained and so Ï suppose some people are saying "Oh well others think she is nuts, too!". Doctors of Physical Medicine, (physiatrists), are usually involved after a spinal cord injury, a stroke, etc, and I had one in rehab 42 years ago, but so far I have not had an okay from anyone, that a nerve in my spine was damaged in/after this accident....from landing/from the trapeze pulling. THAT is the crux of all this.

Onward and upward.


xx
Izzy

[bearwithme]

Izzy!!

"ELECTRICIAN"  LOL!

I love it!!!!!

Bear.

[sKePTiKal]

Iz, I think your physiatrist (hope I spelled that right) is the key for you. You'd think that if the other docs couldn't definitively answer the question of what's going on... they'd have recommended an expedited appointment for you. And yes - nerve things ARE kinda electrical. I have some minor things like this related to a spinal disk issue.

Thanks for adding in some of the other details about the drugs, and how you're able to generate and stop the twitching, gnashing effects and especially that you remember blacking out just before you were hit by the car....

... I'm gonna let this germinate a bit before I suggest any other ideas. But one easy thing to try - I'm not going to say harmless, because I'm not sure about that - might be accupuncture treatment. Maybe Karla knows more about this than I do. But at this point, I think you've described enough for me to suspect - only suspect - that perhaps you experienced a form of fear-generated dissociation (you've mentioned other things like this prior to the accident), a possible concussion or other brain-injury, and I know from my own experience that drugs only complicate recovery from those things... but you CAN recover. Have you seen a neuro doc, at any point in the process? (or has my silly brain forgotten that you already told me you had?)