Thursday, November 7, 2013

2 More Revisions... and a Relapse?!?

Since my last post, I have had two more revisions. For those counting, Including my initial implant surgery, this makes 5 total surgeries in a year's time... yup, still worth it.

(One due to the scar tissue tethering mentioned in my previous post, and one due to the tip of a lead becoming very superficial and trying to poke through my scalp like an underwire pokes through a bra) The latter was a very quick procedure and fast recovery. We were able to resolve the problem by slightly moving the lead up laterally and slightly deeper. This situation would have been worse had I not gone in to the E.D. and waited until it actually came through the skin, so...when it doubt, get it checked out.

After the last revision in June, things had been pretty good. We reprogrammed due to the slight lead position change required, and I was still getting pretty good coverage and relief. 

Until this week...


Well, I suppose it started the week before when I came down with a pretty severe case of tonsillitis which was accompanied by a pretty high fever for several days. 

During said fever, I had some pretty hellish headaches...cry-myself-to-sleep level headaches. But these were not "my" headache. These were obviously fever induced. So, I didn't think much of it. During the illness, I kept my stimulator on of course. After a round of antibiotics, I got better. For about 24 hours, I felt fine.

And then morning came. And with it came my old headache. The one that I hadn't had to deal with in all its glory since before I had the stimulator. Not just breakthrough, like when the weather is bad, or I didn't get enough sleep...but the worst upon waking, hit me like a truck to the temple pain. And it wasn't just the was every symptom that goes along with it; things I luckily had forgotten dealing with on a daily basis. The eye-watering, the one-sided nasal stuffiness, the spasming eardrum, the confusion and memory issues, the bad, not mild vertigo, the bad, not mild nausea, the light sensitivity, etc. and this all lead of course to complete panic that all of these things might be back for good. The fear that comes with the slightest backslide can be immobilizing. 

I gathered my thoughts as much as possible and started trying things. 

First, I made sure that my battery was charged, it was. Then I proceeded to change programs and see if anything made a difference. I did ensure that the stimulator was indeed fully functional and not doing anything out of the simply wasn't providing any relief.

My next step was to turn it off completely. I thought maybe a "Reboot" might be know, sneak up on it. The damn gnomes had escaped the electric fence while I was sick, and they needed to be corralled.

After leaving the stimulator off for about 24 hours, I tried it again. Still not helping. So, I called my rep to schedule some reprogramming. Luckily, she was very accommodating and we were able to meet this morning.

Even though we were able to find some things that gave me a bit of relief, they are all short-lived and it is like my headache acclimates after a few moments and it is no longer effective. So, until the next step, She was able to give me a cycling program which is on for 15 minutes, off for 30 seconds and continues like that. It is slightly better than nothing.

My pain management doctor ordered some blood work and a CT scan, and has referred me to my headache specialist to discuss my HC symptoms returning the way they did, as well as a referral back to my surgeon in case the infection I've had somehow involves my system.

So, tests and appointments and barely getting through. Not sure the why this is happening, but hoping there is a solution in the near future, or that it resolves itself.

Wish me luck, I'll try to post an update soon... And maybe one day, I'll actually post here when things are positive. :) Just know that usually when I'm is because things are going as well as they can and I'm living life.