I am a patient (not a medical professional!) who has been dealing with hemicrania continua since 2009. This causes constant head and facial pain on one side of the head 24/7. I am looking into occipital nerve stimulation as a treatment as I have tried everything else.
Sunday, October 7, 2012
Recovery is slow
I had my permanent peripheral nerve stimulator implant surgery October 1. It was not powered up until October 3 because we had to wait until some of the swelling went down first. I thought I would be feeling fantastic by now but unfortunately I am still VERY sore overall and having a hard time getting around. I have learned to give up and just lie down because every time I am up and around for any amount of time my swelling increases, which causes more pain. The headache aspect is so much better though that it is amazing. I have only had one episode of what I call "the stabs", which the doctors call "exacerbations" since my stim was turned on. Mostly I am just sore from the incisions and surgery itself. I am very afraid of having my leads move as I have been hearing more and more stories of that lately so I am taking it VERY easy for as long as possible. My husband has been extremely amazing throughout all of this. I would not have made it without him. My youngest daughter has been so very amazing and helpful also. All family and friends have been great too, as well as the ONS support group on Facebook. It is so great to have so many people to talk to when I am feeling bad, good, or whatever! I got a new crazy haircut again, but thankfully my hair is long enough that when I leave it down it covers it up so you can't even tell. That would not be a major issue anyway for me. I told a doctor before that I didn't care if my whole head had to be shaved, and I still feel the same way. My surgeon, my St. Jude Medical rep, and the whole staff that worked with me at Cool Springs Surgery Center were all wonderful. I don't think it could have gone any smoother.
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Tara, so glad it is working for you too!!! That is 4 of us that I know of positively getting better!!! I was told it took 6 weeks to scar in so I was extremely careful not to pull on my wires for the 6 weeks. I have never had to have mine redone (yet I guess I should say). It got better every day for the first 3 months, then leveled out and i had a burst of improvement at around 6 months, and by the time a year had passed I had all kinds of coverage that my measly 4 leads in the back of my head were not supposed to do!!!. The worst part were the trocar tunnels and healing those up. So very glad Tara!!! I always worry that someone might have a very negative experience when I am saying it really really works...
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