Do any of you have this symptom?

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Do any of you experience a worsening of your chiari headaches the more you talk? I feel like as the day goes on and the more social I am, or when I am at work as a teacher and I lecture a lot, my headaches worsen. Also, do any of you feel like there is  a tightening and weakening of the muscles in your neck, even the front of your neck, and cheeks and jaw? It almost feels like all you want to do is stop talking and give your neck and face a rest? Plus the muscles around the neck feel sore when I put my fingers to them and massage them, I call them trigger points. 

I actually thought I had a TMJ issue for over two years, and I sought really expensive treatments to fix these symptoms. After two years nothing got better and that’s when a doctor ordered me to get an MRI of my neck and that’s when they found I had a 9.6 and 8.4 mm herniations  of my tonsils. I do believe now that everything I thought was TMJ was actually the chiari symptoms.

Anyone else have a similar misdiagnoses where you thought it was TMJ disorder when it really wasn’t? 

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  • Posted

    Yes I know exactly what you mean. this has been happening to me for the last couple of years. It must be really hard in your job. I find it happens if I am having a conversation and I am doing most of the talking. If the conversation is going back and forth quickly then it is not too bad but otherwise it feels like I am being strangled.When I went to my neurosurgeon he seemed to dismiss this as another of those "unrelated" symptoms ,but I have noticed that he has also booked me in for ENT appointment too when I go back in May. So it will be interesting to see what they say. It is a horrible feeling. Do you find that all of your symptoms seem to come and go? For example i will have a few weeks of bad headaches and they will subside a little and my throat will then dominate or the fuzzy brain or not being able to string a sentence together -all symptoms "unrelated " to chiari - obviously!

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  • Posted

    Hi there,

    I am sorry to hear that you are suffering from this horrendous defect condition- yes they are all the symptom of chiari - it could be worse (mine was) but listen to your body - also be glad that you found it - its not how long the herniation is but most likely how obstructed it is... so did your neurologist say anything yet..in my experience and reading from this site and other sites - chiari malformation will only get worse without operation - of course each individual different however generally speaking- defect condition can only be repaired by operation (just like hip or knee replacement) specialist need to provide the clear flow (by moving the obstruction) make sure to get 2 nd opinion if you are unsure about the neurosurgeon, ask him/her what is the successful rate of the operation - get more information about chiari condition so that you are able to share or even discussing in a better level with the health care proffesional/s  the more you get involved and showed that you really understand and so worry ABOUT YOUR CONDITION AND QUALITY OF LIFE  they will do in their power to help you - but be FIRM and collaborate with them show them that you really need their help.

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  • Posted

    Also there is a light at the end of the tunnel - I have my quality life back now..so its not all doom and gloom, problem is people who are successful in the operation carry on with their life and forgotten how terrible that condition was, as for me because I was suffering sooooooooooooooooooooo...badly (I was house bound and practically in wheel chair when I had to go to hospital) I could not leave the house-nor driving etc..I promised myself - that I will share my experiences with other when I fully recovered..here I am nearly 2 years post operation GOT MY LIFE BACK..good luck..do not leave it too long- get the OP   ASAP
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  • Posted

    Hello Blachhawks3310,

    Where are u from? Beside the cm1 do you have a syrinx? Did you get an Cine-Mri flow study?

    I also went to my neurologist..different Ent specialist with ear pain and cheek jaw pain.

    They said it is TMJ.

    But after the operation my jaws and cheeck feel much better.

    They were very tight and had also difficulty eating..talking..especially hard things to eat..the doctors and my dentist said i greed my teeth at night when i sleep that could cause it also..

    But it was from cm1 coming were my

    thoughts.

    My neck still feels sore from operation.

    So it could be from your cm1..let them take a complete mri spinal cord..a cine mri..

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    • Posted

      Thanks for taking the time to respond to my thread. I am from Orland Park IL, which is a suburb of Southwest Chicago. I did get a CINE flow test done and my doctor said it showed that I have a partial blockage (he couldn’t really say what percentage of it was blocked, but it did show there was at least a partial blockage). I do not have a syrinx either. 

      I am going to Northwestern University May 8th for my posterior fossa  decompression with a rural patch.

      Anybody have any experience with Chiari survives at Northwestern?

      The doctor performing my surgery is their chiari specialist 

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