"The complications of long-term mastoid problems"

With my story I hope I can be of help to others, and hopefully I may receive some wisdom too.

When I was 13 I had a Radical Mastoidectomy. 9 years of ongoing ear infections since I was 4 years old had let to this (and I was left for far too long). The surgeon said to my Gran it was the worst case he had ever seen. I recall last few months before surgery of this daily foul smelling discharge. I had a Cholesteatoma and was so far gone I had a abscess on my Sternocleidomastoid Muscle.

I had a second Mastoidectomy 7 years later, but despite having frequent re-occurring ear infections I had my third Mastoidectomy and widening of the ear canal (Meatoplasty) 3 years later.

Now to prevent ear infections I have to keep my ear totally dry, and have to have microsuction every 3 months (if it is left 6 months it gets infected). So we have a lid on infection!

I sometimes get facial nerve pain so bad all down one side of my face including behind my eye I have to take Tramadol. I understand after my second operation my facial nerve was exposed, and was warned about possible paralysis prior to my third operation. I was lucky in respect to that.

I now see an Osteopath for neck, back of head, upper back problems, which I am convinced is a complication of my Mastoid problems (my entire Mastoid bone was taken away, so one wonders what on earth is my Sternocleidomastoid muscle is now holding onto).

The side of my Mastoid disease my shoulder is lower than the other and I get an immense amount of pain in that shoulder and have been diagnosed with subacromial impingement syndrome in that shoulder, I have less range of movement in my neck to one side, get lots of upper trapezius pain, especially when carrying shopping for example. I have also the past 4 years suffered from incredible tension headaches.

Is there any other Mastoid patient out there having muscular pain, stiffness in their neck, upper back, shoulder(s)? I also have 2 other syndromes which are very debilitating yet not completely recognised by the medical profession, which is a shame.