I just posted this today (1-23-13), 15 days post-Coclear Implant surgery in my right ear, to my FB Relapsing Polychondritis Awareness Support Group/family:
There were so many RPC considerations in the space of my Cochlear Implant surgery experience :
#1 – like, was it possible that the stress of the surgery would ignite a relapse??? (It sure could!) My rheumatologist, eye dr (who won’t operate on the cataracts in my eyes for fear of bringing on Iritis/Episcleritis/Uveitis) and PCP all felt it was safe to proceed, that my body has proven itself to be eligible for surgery after 6 years of remission and no RPC activity. The ENT dr that did the surgery was confident enough to go ahead with the CI.
#2 – no one bothered to tell me that I’d have a tube inserted in my throat for the surgery which was done under general anesthesia. Sooo, the first nite (I was at home; it was out-patient surgery) I was in terror thinking that my trachea was inflamed because of RPC and my lungs were burning because of RPC (It sure could be RPC on both counts!). Next day I found out WHY I felt the way I did – pshwew.
#3 – when the swelling of my head went down and the pressure in my ear (which now has a coil of electrodes threaded through the cochlea) let up, I was having the sensation of intermittent knife-stabbing pains in my ear. I suspected RPC because, although I can’t actually remember the pain, that’s what I kinda think it feels like to have RPC activity in the inner ear after having it happen so many, many times in my life. (It sure could be that!) My doctor explained that that was a symptom of TMJ from cutting through the temporalis muscle – pshwew.
#4 – I experienced a new and different level of self-promotion at the doctor’s office because he would say to me, “Relax” (about RPC considerations) and I would say, “I feel relaxed; thank you for understanding that this is my job and I am doing what I need to do, asking the questions I need to ask in light of having lost body parts and my hearing for not having asked in the past.” I needed to educate him where I was coming from. He understood and he was very supportive – pshwew. I love this doctor – he is a gem!
#5 – the surgery was a great success. My body did MARVELOUS (that’s what my dr said!) but it was very impactual to have this type of surgery where they cut and scrape muscles out of the way and drill through the skull, threading a coil through the cochlea. I am getting back on my feet and activation of the CI is Feb 10th and 11th -4 hr sessions each day. And then I go back about every month for new programming/mapping – for up to a year, I hear, depending on how quickly the brain adapts to the CI. During all this time, I have to manage with one deaf ear aided by a digital hearing aid. It’s stressful but I am grateful for what I do have, which is the ability to function in the hearing world at all and the possibility that this new CI will work well for me, as they expect it to do.
#6 – I feel SO GRATEFUL to the people of the USA who pay taxes which cover this very expensive and progressive technology and gift that I was blessed to received by way of my Medicaid insurance.
#7 – it felt good to have you all rooting and praying for me, and checking on me.
#8 – I especially loved that (one of the ladies in the group) had approached me and we were privatley messaging each other because of some questions she had had, and then she ended up walking me through my surgery process. Life is mutual.
#8 – I love this group and how we help each other; it has impacted my life in so many ways to have a family of people who even know what RPC is, much less that we actually live with this rare disease which can so easily turn into a life-threatening & critical illness with so much damage and loss.
#9 – thanks so much for listening and for being there for me!
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