Searching for answers for 2 years

earfunk
Hi Jeffina and others,
I’m so glad I found this site - I’ve been searching for a long time and in particular I have the same pain and hard lump area below my left ear. I have also been told by my physiotherapist that it is a C1 subluxation however I have other symptoms that comes in or around my ear/jaw area. I have also been diagnosed with TMJ (left side) and use a splint. 6 months ago I had a septoplasty to allow me to breath out my left nostril. I also have an enlrged left tonsil although ENT docs (3 opinions) say it’s nothing to worry about or do anything about it.
The lump below my ear came on around 2 years ago and at the same time have been having the following symptoms (some on and off):

  • Lump in throat feeling (lasted first 6 months and is gone now)
  • Neck and shoulder pain and numbness (mostly dull)
  • Dull ache inside my ear, sometimes a horrible inner itch
  • Dizziness like I’m going to faint (once or twice per month and is not spinning but more like a rocking boat sensation)
  • Crawling sensations above left ear
  • Clicking sound when my wife/daughter/people talk at certain volume/tone
  • Hard lump below left ear with dull ache (also got this on my right side but no ache, I assume it’s bone as both sides feel the same physically)
  • Can’t pop left ear
  • Sometimes hear like blood swooshing inside left ear
  • All of the above is left sided only
    One of things that is really bothering me and I cannot find anything online about it is if I touch/press against my face and head up to 2 inches around my left ear I get this swooshy hard to explain sound in my ear. Almost sounds like as if air is being sucked out of a small hole.
    All of this has lead to numerous doctors, ENT, neurologists etc appointments. All which come back as being negative. I am living in Germany at the moment and they have a great health service but I’m not sure if Im asking the right questions. My doctor has now diagnosed me with Health anxiety which I know I have developed during my time of these symptoms. This makes it more difficult when I go speak to him because he now thinks it’s all in my head.
    Sorry for the long message, but I’m getting desperate. Hopefully someone has experienced similar symptoms and can help me.

Earfunk, what type of splint do you have for your TMJ ?

Have you tried to do anything for the C1 subluxation yet?

jeffina, I'm not sure about the correct name for it as of course here in Germany they just call it a "splint". It's really hard plastic and fits onto my lower teeth. I went through a lot of tests and measurements to have it made. I should wear it 24/7 except for eating. Also I'm a bit skeptical as I was diagnosed via some contraption I had fixed to my face and measured movements. Double skeptical because I was diagnosed so quickly and had a bill of around1,600 euros thrown in front of me...

I tried a Chiropractor who cracked my neck for the C1 subluxation but ended up waking up during the night with a scary explosion/crack sound in my head. I didn't feel right for a few days after that experience so decided the Chiropractor is not for me. I have been seeing a Physiotherapist for TMJ for over a year now and she claims to realign it from time to time with gentle pressure applied whilst also performing craniosacral therapy and general deep tissue massage around my neck, ear, cheeks, head and face.

I'm at a loss as to know what it could be. Noticed now if I wiggle my jaw side-to-side I get a cruching and slight cracking sound in my left ear. It also makes my ear feel funky.

Did you have pain in the left TMJ before starting the treatment? Why did you see the dentist in the first place? What is the splint designed to do, realign the jaw or just treat the pain?

Have you had anyone take a look at the lump under your ear to find out what it is?

Do you feel any better when the physio realigns your C1? There are certain types of chiro that works ONLY on the C1 which may be better. Have you heard of Atlantotec? I believe they are in Germany.

I had a lot of random left sided pains in shoulder, arm, ribs, neck and jaw. Also my face is larger on the left side - not sure for how long though - doctor pointed it out. But to answer your question I had left side neck pain, went to the doctor. He pressed on my jaw joint and asked me to open my mouth - this was painful. He suggested to see a Dentist so I went along with it. Splint is designed to realign my jaw and take away tension. Physio has since fixed pain in shoulder and arm and tells me the jaw muscles are tight and there's likely to a long term knock on effect with compensation down the whole left side of my body - don't buy that but then I just have to go with it.

Doctor, Physiotherapist, ENT have all looked at the lump. I have the same lump on the other side and I'm told it's the C1 pokey bit of the bone... apparently it's siting more to one side and they don't seem concerned although if I touch the left one I get a pain right on it, not sharp but dull - I try not to touch it too much as I don't want to stimulate my lymph node too much as I know there's one nearby.

I feel better sometimes when the Physio realigns the C1. Other times I'm left with dizziness and a few days of anxiety. Anxiety is a major factor in my life now since all these weird things started happening to my body. When it all started so many strange things went wrong physically i.e. diagnosed with IBS, body aches, panic attacks, creepy crawly body and head sensations... ah the list goes on.

Not sure I can handle chiro again, but I will look into your suggestion.

Just read about atlantotec - really interesting. I think my health insurance also covers it :) There's also 3 practices in my region (30 mins drive). I'll look into this much deeper. Thanks.

Earfunk,

It could be that most of your symptoms are related to the TMJ disorder and the knock-on effect that has caused to your neck. GPN can be caused by TMJ problems as if the jaw is too far back it can irritate the nerve.

A lot of people on this forum have a vascular compression of the 9th (and 10th and 11th in some cases) cranial nerves within the skull. That said it may still be related to the neck being out of place, depending on the effect it causes.

I would not recommend to see a chiropractor again if you makes you feel that way. I would only consider someone like Atlantotec that concentrate on the C1 only BUT first of all I think it's important that you get yourself in front of a cranial nerve expert to be checked out that way first.

You need to find a neurosurgeon that specialises in diagnosing GPN, as they will know the correct type of MRI scan to order to look for it. Believe me, I saw 7-8 other neurologists and neurosurgeons before I found the right one as they have to know exactly what they are looking for.

Your dentist could well be right about the problems the jaw cause down one side of the body, so don't rule that out. If the jaw is shifted out of alignment to one side then the atlas can also go out of line because of that. The atlas is seated at the back of the throat so if your swallowing patterns become abnormal because of the lower jaw then the atlas can become abnormal.

If the atlas (C1) is out of place it can cause many unpleasant symptoms in itself, all down the body. Look up the website called 'Up C Spine', a chap that had an atlas problem has put together a lot of good info there and also listed his own symptoms, it's interesting reading for sure.

Your symptoms and story sound a lot like mine. Do keep us updated.

Thanks Jeffina! I think I've found out more here in a few days than I have in the last year.

Just finished a good bit of reading on the up c spine website and I can draw so many parallels with the chaps history. One thing that has been out my mind is a neck/shoulder injury I had playing football -- ended up in ER with an x-ray and told I bruised my shoulder bone - it was a painful no hands fall on shoulder and neck. It was a little time after this all my symptoms started... my physio has already told me I have a c1 subluxation as did the chiro and I'm beginning to feel that is actually what it can be.

Now the difficult thing is getting the right doctor who speaks good enough English and who understands this problem. I will for sure contact the Atlantotec specialist here and at least have a consultation, examination and CT done. I feel really buzzed right now and for sure will dig a bit deeper and keep you updated!

Thanks again!

That's good Earfunk, glad this has been of use to you.

I've had my symptoms for almost 5 years now and taken me a lot of research and seeing many, many doctors to finally get the diagnosis as GPN is quite rare and of course if the cause is the jaw/atlas then seeing doctors won't be of any help.

Personally I have both problems but it's a question of how much help I can get from other means before I require an operation for the GPN. I am hoping to avoid it if I can with the TMJ and atlas work but it's proving hard for me, my jaw bone is not well grown on one side so it's a long-standing problem for me.

Another member on here got good relief from having her atlas repositioned, I think if you look under my original thread on here you'll find her.

Good luck to you.