What should I do?

[Spaceystac]

I have heard many times, I shouldn't see a Chiropractor. High velocity manipulations are counterdictive in patients with a Syrinx or Chiari.
I went to see a oral surgeon for my jaw  pain, and he sent me to a Chiro,the doc did not understanding why I was not ok with that. I went to the chiro, to see what they had to say, what they feel is the cause of my jaw pain.  
They said my atlas is out of alignment, and that studies have shown it can cause limited opening of the jaw. This makes a lot of since to me due to me pain being worse by my neck rather than up at the jaw joint.
To fix it they wanted to do 10 adjustments (that i would have to pay for myself). I tried to tell the lady my thoughts that the treatments were countrdictive and she just didnt understand.   I asked what they would have to do for adjusting  and she showed me a "drop board" not sure if that is what it was called but it is a board you lay one side of your head on and the chiro presses a lever and the board drops and so goes your head "back into alignment" NO THANK YOU. The other treatments in the visits would include cold laser therapy and the activator (another chiro torture device) and intra oral massage.  
I told the lady, my whole back is out of alignment, leg length discrepancy rotated pelvis scoliosis. I had previously had strain/counter strain techniques on my lower back and hip and they wouldnt hold. What happens if it just does not want to hold at my atlas? Or it just keeps going out of place? She said some people's core muscles are not strong enough and sometimes if you have elhers-danlos connective tissue disorders, those patients tend to need to come back more frequently than normal people. Their spines dont hold the manipulations as well.
So do I live with this and hope it fixes it self? Do I go let the chiro torture my the rest of my life? Putting me risk for worsening my condition?
I am up in the air, and not sure what to do. She did say I could ask my PCP to test me for connective tissue disorder, so thats on my list, but thats not going to help my issues. Maybe I should just hold off until my neurology visit, then go from there?  

[actressmouse]

All I remember about the intraoral massage was ...MAN...DID IT HURT while it was being done!!! But afterward, I did have some relief from the jaw stiffness/pain (although it was short lived).  The thing that helped me the most with the TMJ was learning to hold my teeth apart while falling asleep....it was hard to do at first, but 20 years later, I don't really think about jaw pain anymore....(new pains have replaced that one!)  I'm going for a "hot stone" massage tomorrow....not letting them touch my neck, though.  I'll post on that afterward.   Some of the Occipital pain is back and the head pressure is, too.  However, I slept great last night with the help of a new sleep aid (Ambian)....so I guess it's a trade-off.
Take care and chin up (no pun intended!!)

[Spaceystac]

Thanks for your reply, I appreciate hearing your experience. It just keeps me strong and not let the chiropractors do anything to me. I will mention the nerve block to the neurologist I see next month.
Glad you are getting relief from your pain, I have heard a lot of this type of nerve block recently. Hopefully that is something I can benefit from.
That reminds me, a month or so ago I went and saw a new doctor for my jaw and I said to him "cant they just stick a needle in there a inject a magical solution that will make it not hurt?" He responded with "can they do that?" I was like I was hopeing you could tell me! LOL.

[actressmouse]

I had many, many chiro manipulations to my back/neck BEFORE I knew I had the Chiari Malformation...I also had the intraoral massage.  Initially, (before I knew about the Chiari), these adjustments would help my headaches and the TMJ.  I began to suspect there was more to my headaches when the chiro could no longer make my headaches appreciably better.  Since my diagnosis, the pain NL I see at Columbia has absolutely forbidden ANY manipulations to my neck.  Instead, I had Occipital Nerve Block injections (4 of them) done yesterday...and WOW, I haven't felt this pain free in a long time.  There's no guarantee, but I'm taking every minute and enjoying!!!

[Spaceystac]

Thank you all for your replies.  I think I am over due for a good massage, that is for sure!

I think I am going to just try and cope until I see the neurologist in March, see if he has any opinions. In the mean time I am trying to practice my relaxation techniques, and research my options,  Thanks   Stacey

[sleepypea]

The only advice I can give you on the chiro is this. I had a buldging disk for 7 years (cervical). Started going to the Chiro who was aware of my bulge and covinced me he could fix it. After a year of adjustings and weird manuvers I had another MRI only to find out it had multiplied in size and I had to have a fusion.. I also believe it aggravated my Chiari which I didn't realize I had at the time but ever since the adjustments and surgery I have had the other symptoms which let me to other Dr.s and ultimately let to my Chiari Dx.
Just wanted to share...Hope you find ther right treatment for you!!

[selmaS]

  Hi Stacey...If the chiro u went to has no idea about chiari hold off and try to find one that knows about it to see  if there is a safe treatment for the issue u r having....

Keep in mind many of us hold ourselves tense in diff muscles...such as our jaws, legs and shoulders....so , stress will intensify all the pains in these areas.

  I have heard there is a type of PT massage that u can have done that may help.

  "selma"

[pamk5]

Hello Stacey,  I dont have any real advice either except what I have read.  I was told that I have an issue with my right vertebral artery being hypoplastic (smaller than it should be).  When they saw this on MRI and I had to go back for a CT angiogram there was a possibility it was kinked.  So in this interval I read all I could about this.  Seems there have many incidences of these arteries being severed during manipulation of the neck.   I would avoid this if it were me.  That doesnt even cover the possibility of making chiari worse.  I hate to be negative but it seems to be alot of risk for you.  

I am sorry you are in pain and I hope you find some relief soon.

Pam

[Spaceystac]

No, lovely101, that was advice and help, just knowing you too have gone through this makes me feel a little better. I am facing just dealing with the pain also. It has been bad for me since June, and it is getting worse with physical activity, not just eating ect.
I left to Seattle for the weekend and came home yesterday and my bathroom smelt like urine, I had a house full of guys apparently while I was out of town.  I couldnt handle the smell and I couldn't find a specific spot it was coming from so I had to clean all around the toilet and floor. Just that alone flared  it all up and all I want to do now is sit on the couch and eat painkillers to simply cope and take the edge off.  I have still been trying to eat soft foods or liquid diet, but it isnt really helping, I have broken down and eaten things I shouldn't. I figured why not enjoy what everyone else is eating, life is too short to not enjoy food once in a while.

[Lovely101]

I have no advice to offer.. but your post definitely caught my eye! Prior to my chiari diagnosis last March...  my PCP sent me to an oral surgeon for my jaw pain. The oral surg said i had TMJ. He sent me to the chiropractor as well. The chiri told me the EXACT same thing! My atlas is out of alginment and that woudl be causing me all sorts of muscle issues and pain in my jaw, face, neck, shoulders, etc.  He wanted to 'pop' my C1 & C2 back into alignment. I ran out of his office as fast as i could so he didnt touch me!  I have always been curious as to whether the adjustment would help or hurt me. I have been ignoring to the best of my ability and putting up with the jaw pain/limited opening since last march.  Okay, that was not helpful to you at all... but i can say.. you are not alone!