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.

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.

Sunday, March 3, 2013

Oh Blog - How I have Neglected You...2 Revisions Later

It has been a roller-coaster.... Since my last update, I have had not one, but two revisions to document for you. I so wish I'd felt up to blogging along the whole time...but just couldn't seem to get it done.

In September, I did experience lead migration which required surgical intervention. This surgery was in October, 2012. This surgery ended up being much more involved than originally planned and riddled with small complications.


In addition to replacing the leads in my head, the decision to relocate my battery was made immediately pre-op. It was previously in my chest, which was fine in the beginning. But, with the slight weight-loss from additional activity, the corner of the battery would often protrude and bruise with with minimal movement of my right arm. So, the decision was made to place the battery in my right upper buttock during the procedure. (Which has been so much more comfortable than I thought it would be.)

Because it wasn't planned in advance, when they moved my battery, it turned out the leads they had on hand that day were not long enough to go the full distance and they were forced to add an extension connection around my shoulder blade area.

Enter complications: The placement of leads in my head, as well as the running of the rest of the leads from shoulder to hip, had to be tunneled several times (at least 4) due to technical difficulties. Apparently, they would run a set of leads, turn them on, and have either errors or failures. Not intending on such a long surgery, after several hours...the surgeon basically had to make the call that 15/16 working points on two leads was good enough and they closed.

So...needless to say, post-op was pretty rough. And on top of the soreness from all of that tunneling...were the staples. Oh the staples!

Since I'd had issues with infection due to the glue on my head in my first surgery, I requested staples be used on my head (and sutures would be fine elsewhere). I guess there was a communication failure somewhere. I woke up with staples in my head, chest, shoulder, and hip... I felt like Sally from Nightmare Before Christmas. I think it was a case of "I already have the stapler in my hand, CACHUNK CACHUNK, and done." It wasn't so bad until they started to heal, they loosen and become sore. (I had them for about 20 days). They also caused trauma to the skin which triggered my Psoriasis to flare at the staple sites.

So, after all was said and done, I was doing alright. I had even better coverage for my pain than before, and I was healing well.


My stimulator started behaving strangely. I was having a particularly bad headache and thought, "Maybe I need to turn up my stim or change my program..." So, I tried to do just that, only to have the program start to run, or the amplitude start to increase, when the hourglass would disappear, the amplitude would go back to zero. (Not the standard auto-reduction from scar tissue, but completely off.)
So, I scheduled an appt. with my rep. We ran diagnostics and a few more points on the dominant lead were coming back "bad". So, though it wasn't perfect, we reprogrammed using the existing good points and I went home. For a few days, everything was fine. And then, nothing. No stimulation. I checked my programmer and it appeared to be functioning, though I couldn't feel anything. So, I called my rep. Again, we ran diagnostics. Completely different results, but this time, we couldn't program anything. So, they sent me for X-rays to see what the problem was.

The X-rays showed us the problem. The leads were no longer connected to the battery. But not because they were yanked due to slack issues...they were just hanging out in there.

So, third surgery was scheduled.


My second surgery was in January 2013. Less than three months later. I went into this surgery not knowing how involved it would be. I was a giant "if, then" problem, all assuming the diagnostic readings from the IPG were due to the introduction of fluid once it became disconnected.

The Plan:
Possibility 1. If leads are good from extension to battery, replace battery and done. (What we were hoping for.)
Possibility 2. If leads are bad from extension to battery, but good from extension to head, relocate new battery to under right arm (Side-Boob) to avoid re-running head leads and to remove extension from the equation.
Possibility 3. If all leads are bad, replace entire system using long leads (pre-ordered this time) to eliminate an extension to prevent future points of possible failure.

Yup...Possibility 3 it was. The entire system was replaced. Instead of the leads being unplugged as previously thought, instead they had somehow become severed from the battery.

Now, the way I explained this one was, "It was worse than the first surgery, but better than the second."

And this time, though I had one additional incision, (mid-back to run the longer leads) I had staples in my head and sutures everywhere else, so that was much more confortable.

As far as the placement, I'm getting good coverage and we were able to program well. But...


Unfortunately, as of a few days ago at my second post-op appointment. It looks like I'll be going back one more time. (This time should be far less involved.)  The leads have tethered somewhere around my shoulder (most likely due to scar tissue) resulting in them being very tight in my neck/shoulder preventing me from being able to comfortably look down or put chin to chest. The surgeon's concern is if we leave it, we run the risk of dislodging them from either end, which would be a bigger problem longterm.

I have orders for X-rays and an appointment to discuss the plan of attack.

So...we're almost there. As far as my HC goes,  the stimulator is doing a damn good job of keeping it under control as long as the weather is good, I keep stress low, and I get enough sleep. And the pain from the tightened leads responds to painkillers which is more than I can say for the headaches. So, although it has been up and down...I'd still do it all again.

Throughout this entire process, I've had so much support and assistance from friends and family I couldn't ask for more.

Both my St. Jude rep and my surgeon have both been very patient, understanding, and willing to get this right no matter what.

I could complain, but I would have a tough time justifying it.

I hope you are all well. If you're not, I hope there is relief in your future. Stay positive.