Does Anyone Have Experience of Patient & Public Involvement in Tinnitus Research?

Has anyone been involved in Patient and Public Involvement/PPI - working alongside researchers, having input into trials, surveys etc. It would be interesting to know if it helped with your tinnitus.

 

@Rayanna I've been having some input with researchers from Germany that I have contacted for treatment of somatic tinnitus. Most of them believe that 70 - 80% of those with tinnitus/TMJ have at least some somatic issues. The cause of somatic tinnitus/TMJ are well known that include muscle strain that can be caused from forward head bending. We have discussed in many threads what causes T to change sides (ears) and/or change in volume during the day and night, electrical impulses in head, headaches and why T is loud when waking from a nap.

We know that much of disability of the neck and jaw is caused from muscle tenderness in the upper part of the trapezius and temporalis muscles. The masseter muscles and DCN can indicate bilateral T and non alignment of the temporomandibular joints and SCM can show the neck out of alignment. Sound can change with movement from problems with the upper trapezius that also can relate to TMJ along with the mastoid. The mastoid can be responsible for one sided ringing.

I've been told to use a mouth split if needed, trigger point therapy on the trapezius and SCM, but first focus on the cervical spine (a first cause of almost everything) that includes tension in the spinal cord and blood vessels that supply blood to the brain. I been told to use a folded towel as in Dr. Mandel video behind the neck. Use heat. To use the towel first, followed by trapezius and SCM therapy along with heat. By doing this for several weeks, maybe a few months, then trigeminal involvement, mastoid pressure will then react in a secondary positive way.

That c spine therapy (the towel) and modulation of neck muscles (Susan Shore) or for now trapezius and SCM trigger therapy should help everything else to fall into place. After a year of all kinds of tests and treatments, I am trying these methods and they are helping.