Sunday, December 28, 2014

"Tough times never last, but tough people do." -Robert H. Schuller

The Year in Review

Since the relapse of October 2013, I have been in a bittersweet holding pattern. In an effort to find out why my stimulator was no longer effective after a strep infection, my rep and I went through every channel. I saw my surgeon as well as my headache specialist, and after diagnostic tests and physical exams, while both agreed that infections of this nature exacerbate headache condition symptoms, neither were able to conclusively determine why I was no longer getting the same level of relief.

I was referred to a physician at a new Pain Management center who was said to specialize in using neuromodulation for pain to discuss my options.

He said my options were either a full revision, (Using a possibly different lead type and/or configuration or his preferred suggestion... radio frequency ablation. (Which could potentially rule out stimulation as a future option) I was hesitant about this option for a few reasons. I'd never had any lasting relief (past the initial anesthetic) with nerve blocks, and was previously lead to believe that although nerve stimulation could treat Hemicrania Continua that the problem wasn't actually the nerves like in some other conditions and destroying them wouldn't solve anything. I told him how well stimulation had worked for me, and his response was basically, "Well, it isn't working now, so we should do something different."

So, I agreed to a trial of a slightly different type of Injections than I had previously tried to ensure I'd be a good candidate for RFA. For me, and for several reasons I may outline at a later date, this series of injections were a horrible experience and the second visit actually blindingly intensified my pain. So, I didn't pursue RFA any further and knew my only option would probably be one more revision.

Life-Altering Sidetrack

Due to the gaining during the past few years on top of a lifelong battle with my weight, I had finally begun the process of bariatric surgery. (With the additional hope that weight loss might miraculously make me an inhospitable environment for head gnomes.) And I discussed this with my rep and the Pain Management doctor. We agreed that a revision was probably inevitable and that it would be best to wait until a year post weight loss surgery once I'd lost my excess body weight and things stabilized so we could avoid any issues that extreme weight loss might cause with an implant. At that time, since I feel this is temporary and there are future options, I finally requested and accepted the use of narcotics to get through the year. This is always a tough decision since they do not eliminate my pain, (otherwise it would have been my first treatement choice) but when I have nothing else, they help take an edge off to get through the day.

I had Laparascopic RNY Gastric Bypass surgery in May 2014 and to date, have lost 120lbs. And though it hasn't helped the Head Gnomes, being/feeling healthier overall, makes it a little bit easier to manage day-to-day life.

Where I am Now

Over the past year, maybe due to weight loss, my stimulator has slightly increased in effectiveness. (Not to original levels, but rather to the point where if it is off, my pain is noticeably worse.) So, we have reprogrammed a couple of times to get the best possible results and I use it 24/7, supplement with the pain medication, and wait to start discussing the possibility a revision sometime after May 2015. The who, where, and how that will all work out is still up in the air.

Despite this bastard condition, all of the daily struggles it creates, and the occasional really bad Head Gnome day...


I've still had a pretty good year. I hope you all have as well. And as always, for those of you in pain, I wish you relief.  And if relief doesn't come, I wish you moments of happiness, love, and support throughout that pain.