I'm newly diagnosed and new here: I have so many questions

Hello everyone! I am new to the group and newly diagnosed. I see Dr. Hackman in January at UNC.

I have a few questions/thoughts (okay, a lot):

I have severe TMJD (diagnosed finally 8 months ago) and currently in treatment (appliance therapy, etc). Both meniscus discs are dislocated and the left is torn, I have spurring etc. All of this confirmed via numerous imaging (MRI, CT Scans, etc).

I also have migraines and occipital neuralgia after one debilitating cervical chiropractic adjustment 3 years ago. The occipital neuralgia was diagnosed via nerve blocks and botox.

About two years ago, I had a spinal tap which led to a CSF leak and subsequent blood patch. I had follow up imaging to ensure the leak was “fixed”.

I developed really odd symptoms over a year and a half ago and they seem to be getting worse.

I have severe neck pain and pressure at the base of my skull, neck stiffness, stabbing pain in my head when I lay down on my side, feeling like something is catching in my neck, dizziness or lack of air when I turn my head a certain way, a feeling of something catching in my throat and pain behind my ears, severe muscle soreness and tenderness in my temporalis and occipital areas. I sometimes feel like I can’t breathe properly even though my oxy levels are fine. My voice gets tired easily if I talk too much.

I cannot look down to write, type, read, cook, complete daily tasks without trigging these symptoms.

One of my odd symptoms is SEVERE pain, stiffness and muscle spasms in my neck if I use my right arm to do anything. The pain spreads into my neck and back of the right side of my head. My shoulder and arms are fine. Washing my hair is almost impossible.

There are no issues with my cervical spine, etc.

I’m finding it difficult to pinpoint what is causing my symptoms. I know everyone is different but I wondered if you could share your experiences and input with me?

What kind of pain do you experience?

What are your symptoms like?

Does anyone else have TMJD?


1 Like

Arm issues also sound a bit like thoracic outlet syndrome


My pcm mentioned this to me a few weeks ago!!

Certainly quite a few of your symptoms sound like they could be ES, there’s info in the Newbies Guide Section about common symptoms and what might cause them if you’ve not seen it, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Having symptoms worsen when your head is in a certain position is very common.
Certainly the head and neck pain, feeling like something is catching in your throat, voice issues can all be ES symptoms. The styloids can irritate the accessory nerve to your shoulder so it could be causing issues for you, but looking into TOS as @vdm suggested might be worth doing. Vagus nerve irritation can sometimes cause breathing issues as well.
Quite a few of us have had jugular vein compression, which raises the pressure in your head & can sometimes cause a CSF leak- there’s info in the section I mentioned about vascular ES & the different symptoms which that can cause, so that’s worth a look at too. Dizziness when your head is in a certain position is common with VES…
Have you tried any nerve pain medications at all? that might help you while you’re waiting to see Dr Hackman?


TMJD is a fairly common complaint among our ES members. I’ve had it since I was a child & interestingly my ES surgeries actually caused my jaw joint pain to go away though my right jaw joint is still noisy when I chew & talk. I wear a splint/night guard on my lower teeth & a retainer on my upper teeth when I sleep to help keep my bite properly aligned. My jaw joints are pretty worn out, but so far I haven’t needed any invasive treatment. I am sorry to hear how advanced your TMJD is but am glad you’ve found someone to help you.

We have had members who had terrible TMJD issues & others w/ TOS issues that resolved or minimized after their styloids were removed so that’s something to hope for but not a guarantee.

The link @Jules sent should be very helpful in identifying potential causes for your symptoms. Quite a number of nerves run through the area where the styloids are & each one, when irritated, can cause a number of symptoms.

1 Like