Hi Kaz, I actually had all the nerve conduction tests done a few years back (horrible tests) and everything within normal limits.
I just wanted to update this thread to say I have been diagnosed with GPN from an MRI scan I had in January, PICA is distorting the 9th, 10th & 11th cranial nerves.
I've been offered surgery and I am currently giving it consideration. I still believe I have issues with my jaw and spine though which also need addressing so I am caught between the two currently.
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.
@ Jeffina - PICA - Posterior inferior cerebellum artery? So is yours looping around compressing the nerves? At least you have now found a cause. I assume you had to have the MRI with a dye?
@ Earfunk, I would suggest that you ask to be tested for Sjogrens syndrome. Sjogrens affects the mastoid bone which is the bone you are mentioning with your ear. I have MS and Sjogrens and suffer from GPN.
Some of your symptoms I can relate to but I am not sure whether it is part of my MS or Sjogren's. The pain I get in my mastoid is undescribible. I also get a deep crawling sensation in my ear. Before the pain from GPN struck me I had the sensation like a lump in my throat for a long time. It would last for many months and then disappear. Over time it turned to terrible pain.
So my advice would be to be sent to an eye specialist for Shirmers test, also ask for some blood tests DNA, ANA, SSA, SSB, ESR. I would ask for a hearing and balance test which your GP can also order. I would also be requesting to have an MRI to see whether there are any abnormalities but that must be done through a nuerologist. But first gather the other test information and that may build a picture so that the neurologist will listen to you ;-)
These tests will determine if there is anything neurologically happening plus rule out or confirm Sjogrens.
Those would be the main ones to start with. Your doctor can order all the blood tests and write a referral to the eye specialist requesting the test. Out of curiousity do you suffer from dry eyes, dry mouth, and/or very thick sputum?
Yes Kaz, that's the one. I had a thin cut MRI of the base of the brain with dye, yes. That defined the area much better than I'd had done before and clearly picked it out. It is an abnormal loop that is distorting the nerve roots.
Kaz said:
@ Jeffina - PICA - Posterior inferior cerebellum artery? So is yours looping around compressing the nerves? At least you have now found a cause. I assume you had to have the MRI with a dye?