Mastoiditis ~ Neck & Back muscular problems later in life?

Posted , 5 users are following.

With my story I hope I can be of help to others, and hopefully I may receive some wisdom too! smile 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! smile 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. 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! Feel free to ask me any questions or impart any knowledge yourself! smile Big Love xXx

1 like, 4 replies

4 Replies

  • Posted

    I've had 4 mastoidectomies, 1st for a cholesteatoma and 3-4 for attempted reconstruction, got it fully reconstructed on the 4th surgery. The most recent was about 12 years ago. I am now 30 and have been having neck and shoulder problems for the past year or so. Neck muscle on the side of the surgery is in spasm, had an emg and there is no nerve problems and the muscles all react just fine. Also had a ct scan that came back clean. Yet the muscle pain and stiffness persists.
  • Posted

    hi i had a Mastoidectomy over 25 years ago and had my inner ear reconstructed at same time i think.

    i am in a lot of pain in my neck eyes head and all over at min my i am week, can hardly move my hands and feet in a morning and also fatigued and dizzy and feel sick an confused all the time amongst other stuff. its been getting worse overthe last 8 years and ive been messed about loads with regards to operations, am waiting for it all removing again even the cement they built it back up with.

    i have had a cronic infection since it was done, i been told i have a brain tumor and they got that wrong and now i have had MRI and they found lots of lessions on my brain - MS has been mentioned 3 times.

    they put a permanent grommit in my other ear and thats fallen out leaving a big hole for an ear drum, they wont do anything with this cos i have a lot of fluid out of this side also.

    today they gave me vitamin D diffiency tablets and told me in 3 months i will be a new man.

    i been waiting for operation date for 6 months after my pre assessment for a revision Mastoidectomy.

  • Posted

    Hi GraysInn, I live in Tucson AZ USA. I find these messages interesting.....I had a radical mastoidectomy in 1975 and now I'm 50 and in some pain. I know there is a connection to that earlier surgery. Some fascia and tissue near my surgery has gradually weakened. It leads to all kinds of other issues.......including for me, digestive issues. Let me know how you are doing. TOM
  • Posted

    Hi I like you had ear issues from being 3-4 years old.. had grommits twice and an eventual mastoidectomy on both ears at 14... wear hearing aids in both ears... now 24 years later after a full 2 years of recurring infection in right ear I have been told I need another mastoidectomy on right side... just had pre op assessment and have ct scan booked on 1st september then guess waiting game till op... I suffer headaches, feeling of heaviness in right eye n right side of face already which according to consultant is due to ear issues n hopefully will get better after op... have to admit though I am terrified as have four kids now n thought of losing hearing etc which consultant said sometimes happens is my worst nightmare..

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