I'm not in a great place

Since I haven't posted in such a long time, it's a bit of a long walk to explain how I got here...but here goes:

THE CATCH UP

Throughout 2015/2016, I experienced quite a few hospital visits for unrelated Breast, Gastric, and Ureterorenal health issues which required a couple of surgeries and a whole bunch of procedures. Along with beginning a dental treatment plan that was long overdue. That being said, the thought of undertaking a stimulator revision in the midst of that wasn't very appealing, so discussions were pushed back. Despite the fact that around March of 2016, the tethering and scar tissue in my neck got pretty painful on its own and we almost took to surgical intervention, but decided to try other methods such as physical therapy and muscle relaxers to ease the discomfort and decreased mobility.

So, into 2017 I continued to hold fairly steady with moderate pain control from my stim and supplemental opiate pain medication. Even though I can't function without the stimulator, it still leaves a lot of HC pain to control with few alternative options. So, it was time to once again meet with my headache specialist to discuss revision 
opinions/options and decide what direction to aim.

We touched on the prospect of finding a provider who would be able to slightly change the location of current leads as well as add a supraorbital lead, which I've wanted from early on (It's a large area of my pain that my current stim just can't reach) , but this would likely require a trip to Texas and possibly not be covered by insurance.
In addition, we talked about the fact that if we did a lead revision now, I'd probably only have a couple of years left on this battery, and would have to eventually replace/upgrade to new technology (possibly Burst? Which I've heard is less distracting to the brain. Since you can't feel it, it could help reduce the brain fog symptoms of 
chronic pain with stim) and this would mean another surgery fairly soon.

SO...

We decided it was best to continue "as is", until such time that a battery replacement becomes necessary, and attempt to implement additional supplemental methods of pain control. 

THE INTERIM/SUPPLEMENTAL OPTIONS

BOTOX

We started with BOTOX around June in hopes that it would be more beneficial in conjunction with stimulation. Unfortunately, it was not only expensive, but it really only helped with migraine and wasn't as effective for treating my HC as we'd hoped.

GLIACIN

The second item we discussed was the addition of a patent-pending nutraceutical called Gliacin, developed in part by my headache specialist. I had participated in early compound trials and found it helped overall with inflammation and hope that it can be of some benefit to me now. Though I have obtained it, due to my particular gastric issues which prevent me from taking capsules, I've had a difficult time incorporating it as of yet. (It is a bit hydro-static when trying to mix it into food, etc.) but, hopefully I'll find something that works. 

SPG BLOCK

During these visits, my provider was once again able to put me in contact with another patient in similar circumstances. They mentioned the treatment that had worked well for them was an SPG (Sphenopalatine Ganglion) Block. Which is a slightly invasive procedure I had briefly considered in the past, but is no longer performed by that provider. So, I added this to my list of treatments to research once again. I asked my Pain Management provider if he knew of anyone who does perform this procedure, and he was able to find a doctor in the practice who does (I'm not sure yet of the particular method he uses yet), but it has been ordered and should be scheduled soon. I'll post the results of this endeavor as they unfold.

OPIOIDS VS MEDICAL CANNABIS

And finally... we discussed the drugs. I hate that I rely on Opioid medication (My HC does not respond to it, but it is helpful in the treatment of secondary pain and the pain of the implant iteself. And, due to the nature of my particular headache condition, I don't have to be overly concerned about rebound headaches as a result.) It is especially difficult in these current times of the "Opioid Crisis" where quite often as a chronic pain patient, I am made to feel like a criminal. This is a very nuanced discussion that I'll set aside here, but, when all is said and done, it would obviously be ideal for me to not be dependent on this medication...

In researching alternatives and scrolling support group forums, it has been obvious as of late that many HC, TN,  and Cluster Headache sufferers are finding relief from Medical Marijuana and related products such as the non-euphoric CBDs. Though I live in a state where medical cannabis is legal, it is not yet an option in conjunction with 
traditional pain management, as it is governed nationally. I would have to essentially trade one for the other, go through the hell of chemical withdrawal, and risk being an acceptable patient in the future if things didn't go as planned; all on the hopes that it might be therapeutic. This is still a very possible option for me in the future. There is just a lot to consider before moving forward while the medical community's acceptance is still in its infancy. 

THE CURRENT WRENCH

Amidst my other health issues, I have Psoriasis. When I have a flare, my scalp is usually ground zero. After my most recent flare, most likely a result of stress, some weight gain, and the changing of seasons, the plaques began to subside, but I noticed one of my lead tips was becoming pretty superficial. During the busy, final week of October, I tried to put it on hold and hope that it would resolve on its own, or at least wait until I could get it looked at. But as opposed to the last time I had a similar issue in 2013, this time it has brought with it a drastic increase in pain. My HC headaches are at least 2 to 3 pain levels higher at all times and I can't adjust my stimulator to properly accommodate without causing painful stimulation at the area in question. My biggest fear in this situation is the lead actually penetrating my scalp and compromising the system resulting in infection and potential removal. This would be no less than devastating. So, for a few days I kept track of it. Although it wasn't getting any better, by Halloween night it hadn't seemed to have gotten any worse (other than the crippling headache flares at certain times of day and being held hostage on the couch with ice packs. Waking up crying, falling asleep whining) 

On Thursday, I went to the dentist (another saga in itself) and when I was resting my head on the dentist's chair, I noticed increased pain at the lead tip. When I felt to see what was going on, it had gotten even more superficial and I am now pretty concerned that it may penetrate the skin with a wrong movement, or a mindless scratch. So, rather than risk another day, I went to the ER. I was given X-rays, and waited with an ice pack for about 5 hours for the neurosurgery resident consult. He quickly examined the area and concluded that since the skin was intact, I should follow up in the clinic with my surgeon. (Vastly different than the course that was taken in 2013 where I was admitted immediately for a slight revision that successfully avoided lead exposure) So, I called the office this morning and was told that they would confirm with my surgeon whether a clinic visit is warranted or not, and if so, call me early next week to schedule.) I've been repeatedly told that it is important to catch these things before they become exposed or infected, yet no one is really seeming to be concerned...so, I'm not sure whether to share their optimism, or feel slightly disregarded. My current pain pushes my mind toward the latter. It also made the sentiment, "I know you had to wait a long time, I have a lot of sick people upstairs." make me feel like more of an inconvenience than a patient, when I'd like to think it wasn't meant to be taken that way. So, I'll most likely be spending the weekend trying to keep my headache under a 10 and my scalp intact. Nervous that they may take away the only thing that gave me any of my life back, or deem me unsuccessful and refuse to support any further revisions. Not a great place to be. But, I'm still amazingly lucky to be surrounded by people who love and support me, and I'll move forward however I can.

Sidenote: Last year, my amazing St. Jude Rep had a career change within the organization and I've not had any interaction with a new rep yet. So, after my followup appointment, I'll contact them to set up a meeting to discuss what the plan will be moving forward. It just feels slightly more overwhelming without her there as a constant. 

I hope you are all doing as well as possible, and I'll try to post again soon (Maybe even within the year) - Cheers.

"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...

EXAMPLE

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.

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...

RELAPSE?

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 headache...it 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 ordinary...it simply wasn't providing any relief.

My next step was to turn it off completely. I thought maybe a "Reboot" might be helpful...you 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 quiet...it is because things are going as well as they can and I'm living life.

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.

FIRST REVISION

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.

UNTIL...

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.


SECOND REVISION

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...

THIRD REVISION (Upcoming)

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.

146 Days- Is my head under warranty?

It has been a couple of months since my last update... And there is some reason to post now, so here it goes.

Since my last update, things had been going fairly well. And before I get to the issues, A couple of positive highlights...

The Good

* I have been able to sit at the computer for a few hours and test drive my ability to function as an artist again. It has helped me feel a hell of a lot more like myself. I quickly realized I still have limitations, but it was a start.

* I have been able to start reading books again! So many in the backlog. I get pretty bad nausea and vertigo when I turn the pages or my eyes jump from the bottom of one page to the top of the other, so I am not reading quite as fast as I used to...but if I pace myself, I can get through it without the extreme pain I was in before.

*If all goes well regarding "The Ugly" section...I'm looking forward to attempting additional daily exercise in an attempt to regain a level of health I'm more comfortable with.

The Bad

So, starting around the 4th of July... Monsoon season hit pretty hard here in the desert. It was around that time I discovered that my Stimulation was no match for Barometric pressure. I had some of the most brutal headaches of the past few years, and definitely the worst since surgery. Basically, storms put me on my ass and there was nothing that could be done about it. So, as long as the weather was clear, I was doing alright.

As I mentioned...aside from storms, I also learned that the stim doesn't help when a good ol' fashioned Migraine headache hits. The ones I've known since my teen years. The no lights, no sound, no movement, no talking type. Just a dark room, an ice-pack, and my pain. I get one every few weeks and they don't respond to abortive drugs. The good news is,  I had luck in the past with a preventive drug which I plan on possibly resuming given the H.C. was being fairly well controlled by my stim. The only reason this hasn't happened yet is because scheduling with him is currently a couple of months out, and I had to cancel my last appointment at the last minute due to scheduling conflicts and transportation.

The Ugly

For a couple of weeks, the leads in the back of my head started feeling...odd. There was a very obvious coil that suddenly starting feeling bulging and uncomfortable.

This past Saturday, I was hanging some clothes in my closet when I felt a very slight popping sensation in the back of my head and suddenly my stimulation was in a different location (At the base of my head near my neck at the exact center of my head under the original incision spot) and it was very painful with every movement of my head akin to a tattoo machine. So, I quickly retrieved my programmer and began testing and to the best of my knowledge, the bottom lead (The most effective one recently) has dislodged and migrated. I switched to a program utilizing the top lead only (Which is neither all that effective or pleasant) and contacted my St. Jude rep.

She suggested the first step should be an appointment with her to reprogram and see if we can "recover the stimulation" by I'm assuming moving the stimulation to points on a different area of the lead that may still be in a good spot.

She said they would probably order and X-ray and go from there.

From the folks I've talked to, it doesn't seem likely that this can be remedied non-surgically, but I'm trying to stay positive. Considering how happy I was, I can't even entertain at this point the prospect that 4 months is all I'm going to get before things go south.

So, I'll know tomorrow. Wish me luck, and I'll post once I know more.

[Heavy Exhale]

Almost Two Months since surgery!

And boy has time flown!

So, turns out I'm one of those slacker bloggers that starts out with the best intentions in the world but then life gets going and the posts stop. My most sincere apologies. [Note: You may have noticed that during recovery, I attempted to do mobile updates to the blog, but due to a change in programming on the Blogger site, those appeared as gibberish, adding to the frustration and guilt of not blogging]

But the difference here is the mere fact that life was able to get going! My stimulation was turned on one week after surgery and my life seemed to change overnight.

As I've explained to people...this isn't a cure. BUT...and that is a big but, it is a treatment that allows me pain vacations. I have anywhere from 40%-100% relief from the stimulation. So, I'm doing pretty damn good...most of the time.

Since I have neglected the blog for so long...there are so many things I wanted to explain and recount in detail that I just won't be able to now. But I'd like to occasionally post now when items of importance arise or when things I feel may be helpful to others come up.

Here's a short list of things I wanted to post about in detail and didn't have an opportunity to. I eventually decided I would not have a chance to retro-actively post two months of info and just had to suck it up and update you lovely people! So, if anyone wants/needs more information on any of these topics. Just ask, and I'll expound on it in a later post.

1. Surgery Day Experience/Lead and IPG placement
2. Amazing friends, family and support system who helped me during recovery
3. A heartfelt thank you to those who contributed financially
4. Minor post-surgical infection
5. Programming appointments and fine tuning my stimulation with St. Jude folks

And now the present. As I said, I consider myself to be doing pretty good. I am healing well (Sans some hypertrophic scarring on my chest incision) and I think I'm where I should be in my post-surgical timeline.

I will be seeing my headache specialist and/or pain management doc soon to discuss resuming a drug to prevent my true migraine headaches (Which are much more noticeable now that the constant HC headache is being somewhat controlled) I am getting one every week to two weeks and pre-HC had good results with Topamax. Hopefully it will work for me again.

I am able to socialize with friends over dinner and the like without needing two days recovery on the couch. I  have more energy...not as much as pre-HC, but I'll take it! And I can only think that can improve with time.
I can be a bit more liberal with my spoons/marbles.

I've already lost about 15 pounds since surgery simply from being more active in daily activities. I hope this continues and I look forward to being able to get more exercise in the future, as I gained 80+ pounds since the headache began.

The computer still gives me some trouble after a while, but I've more than doubled the amount of time I can look at the monitor. I can read for a bit at a time too! I'm so excited to catch up on my to-read list.

I can drive for short distances now (That was a recovery milestone I was very happy about) Since I have to turn off the stim to drive, the headache doesn't take long to return and about an hour or two to get under control again, so I keep the trips short.

Basically, I'm starting to feel more like myself again. Or at least feel like I have the opportunity to evolve into a me again. So...as I enviously read on other blogs a few months ago...at this point, I'm so happy I was able to do this, and I'd do it again in an instant.

Again, I apologize for the lapse in posts. I hope I didn't worry/disappoint anyone too much.

The above pics are things friends/family shared with me on social media or purchased for me after surgery. I loved them and wanted to share them here. Below you'll find my immediately post-operative pictures (My incisions were closed with dissolving stitches and surgical glue). I'll try to post some current ones soon so you can see the progression. Thank you for reading, and good luck to you all.

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Six Days since surgery. Scheduled to have stim turned on tomorrow. Hoping to feel well enough to blog everyone up to date soon.

Amy's surgery started @ 1:34 and I just got a beep she's headed to recovery... So 1:22 worth of surgery

Permanent surgery scheduled!

On Wednesday the 4th,  I had my consult with the neurosurgeon who will be performing the permanent implant procedure. My wonderful St. Jude rep met me at the appointment and we talked with the surgeon together. She was very helpful in the discussion regarding number and placement of leads and pulse generator as well as providing excellent moral support.

The appointment started with a medical assistant taking vitals. I was then met by the Nurse Practitioner who did a basic physical exam and took a bit of medical history in regards to my headaches. The surgeon then came in and after a couple of questions, we were discussing the details of the surgery. I was so relieved there was no hesitation on his part as to whether or not to proceed.

He let me know that he would be out of the office for a couple of weeks for a conference (Otherwise we could have scheduled it sooner) Although the 51 days since my trial was removed has seemed to last far longer, I'm not complaining about the fact that I only have to wait two more weeks!

The plan is for two leads on the right side, one above and one at the level of the mastoid. The pulse generator will be placed on the right side in the infraclavicular area. He explained to me that a day or two before the surgery, I would be scheduled for a final pre-op appointment for last minute blood work, chest x-ray, etc. He let me know that he was sending the request to his surgical scheduling person and that she would be contacting me to finalize the date.

I picked up my visit summary paperwork at the desk on the way out, and they informed me that I should be hearing from the scheduler by the following Tuesday. She called me the following day! My surgery is officially scheduled for April 19th at 9:30am. My pre-op visit is the day before at 11:00.

It doesn't quite feel real yet. But, I'm sure that it won't for a few more days. My plans over the next couple of weeks include slowly getting my house cleaned for the recovery period, Gathering volunteers to help out after surgery, Stocking the house with groceries, and general pre-cuperation.

I can't help but feel that the support of everyone in my life has played a major role in getting to this point. So, a sincere thank you to all.

I'll post again after the pre-op visit.

Pre-Op Consultation Postponed

So, the Friday before my consult was scheduled, I received a call from the surgeon's office requesting that I obtain copies of the images from my previous Brain and Neck MRIs. Even though they are over three years old, and the surgeon will be sending me for a recent MRI as part of my pre-op testing, they let me know that he would want to look at them prior to my surgery to get a better plan of action for the lead placement planning. So, if you are in this process, you may want to do the same to be prepared and avoid last minute requests and driving.

I got everything on CD that afternoon and was prepared for my Monday morning consult...

On the day of my appointment I received a call that my surgeon had been called in for an emergency surgery, and I have had to reschedule for April 4th. Though I have to admit, I was pretty disappointed (That morning's pain level didn't help any), I quickly had to focus on the fact that 1. Someone needed him more than I did at that moment, and I hope they had the best outcome possible in their situation. 2. I am not dealing with the unfortunate insurance denial issues I see every day with other folks in my situation. and 3. I've dealt with this for years, what is a few more weeks for the possibility of lifelong relief and improvement.

So, keeping my head up...so to speak...and I'll let you all know what happens in April.

http://gnomefence.chipin.com

Awaiting my consult appointment

After my successful trial, I have an appointment on March 19th with the neurosurgeon who will be performing the permanent implant. My surgery will be scheduled at that appointment for sometime within the two weeks following.

I apologize for not posting very often. I've been at an increased pain level since the trial was removed and haven't been in front of the computer much.

I received a packet of information from the surgeon that I've been asked to fill out and hand carry to my appointment. Other than that, not much information.

I'll post again after my appointment unless something of note comes up.

-------

Wrote this little piece with homage to Iron Maiden's "Number of the Beast"...


Gnome who stabs and pokes at me
for the gnomies stab the head with wrath
because they know their time is short.
Let him who hath understanding deaden the nerves of my 'ead
for it is a burning bundle
a bundle of sick, hurty, and sicky sick.

Trial - afternoon of day 5 and the aftermath

It has been a few days since the removal of my trial, so I apologize if I leave anything out.

My appointment was Tuesday at 11:15am. The trial removal really was a simple procedure. I arrived at the doctor's office and was escorted to a standard visit room. The St. Jude rep was there to download my program data and we discussed my journal a bit and he collected it. The doctor came in a few moments later and we discussed the success of my experience and he explained the next steps toward my permanent implant.

He explained that after his office completes the dictation and notes of my trial, they will be sent to the neurosurgeon he is referring me to. As soon as they can, they will schedule me for the consult, and then we can schedule a surgical date. This surgeon is extremely busy, so I am probably looking at about a month wait.

The doctor began the removal. He un-taped everything (this was probably the worst part) he cleansed the area with Betadine solution and with gloved hands, held the leads, placed one hand on the back of my head and asked me to take a deep breath and hold it. He pulled the leads free. There really wasn't any pain to speak of and only about a second of discomfort. It just felt odd. My friend who had driven me to the appointment asked what it felt like, and there was really no explanation better than, "It felt like wires being pulled out of my head." So, I know that isn't helpful...but it felt as I expected it to.

He placed a piece of gauze dressing over the site, and taped it in place. He gave me a prescription for antibiotic ointment which I was supposed to apply  3 times a day for 5 days... I was not able to do this, as the ointment is in a mineral/petroleum base which I am allergic to. But it seems to be doing fine without it.

I asked when I could shower...he told me I needed to finish my antibiotics (I had 2 days remaining) and wait for the site to fully scab. So, I finally got to shower last night... It was probably the only plus side to giving up the trial unit.

The day after the leads were removed, my boyfriend changed the dressing and snapped a photo. As you can see, the "vampire bite" as we are calling it, had not quite scabbed enough for a shower, but in the second picture, taken today, you can see the punctures are barely visible and I no longer need a dressing. The purple lines you see are leftover marker from the procedure.

Trial Day Three, Four, and the morning of Five

I'm sorry I didn't post sooner, but I was busy enjoying my week with reduced pain!
I've been surrounded by my friends who have been here to help me out with meals, etc. and I'm glad that I felt so good they were mostly social visits with a few tasks here and there. My cheeks actually got a bit sore from smiling yesterday.

As far as the details of the trial...I know that it isn't placebo because of Sunday morning. I woke up about 6am to use the bathroom, and went back to bed because I was still a bit tired. I woke up around 10am with my usual headache at about a 4-5 on the pain scale. I didn't know if it was because of the program I was using so I pulled the control out of my waist pack (which I forgot to mention was another item my St. Jude rep gave me for the trial to hold everything comfortably) when I checked it, I realized the battery had died while I was sleeping! I changed the battery, and about an hour later, I was good again.

I've had some mild (2-3) headache pain on the right side above my eye, which changing the occipital stimulation would help sometimes and not really help other times. This may also be rebound headache from the narcotic painkillers I'm taking for surgical discomfort. Either way, I'll take it gladly over what I was dealing with before.

THE BIG TEST

I was given homework by my rep, to do a few things that would normally exacerbate my headache. One task Aaron and I chose, was to go to our local pub for a drink (non-alcoholic of course) and conversation with friends for about an hour...with live, albeit acoustic, music in the background. This experiment went well, as we left because of somewhere else we needed to be and not because I was in too much pain to stay!

The second test was one about which I am very excited...I was able to read a couple of chapters in a book! "Makers" by Cory Doctorow for anyone interested. I only had the slightest bit of eye strain headache, which a friend pointed out could even be lack of practice. :) I was so happy to be curled up on my couch with a cup of hot tea, a blanket, and a book.

Today is trial removal day. Not looking to forward to saying goodbye. Specifically, I've gotten spoiled to waking up in the morning without a headache. I just have to focus on the fact that it puts me one step closer the the permanent.

Wish me luck.

Trial Day Two

This morning...

Well, let me start instead with my usual mornings. They suck. Big time. Regardless of whether or not I had a good night's sleep...or a bad headache day the night before...mornings are painful. I wake up with a 10. It takes a while each day for me to overcome and function with a headache that I can get to a 3 or 4 baseline of operation. And on days where I am awakened before I'm ready...say, by a phonecall or something...I'm pretty much at a 6 or worse for the rest of the day. But not today...

After an amazingly restful sleep...

This morning, I was awakened by the doorbell. It was the Jehova's Witnesses. When the doorbell rang, I quickly got up off of the couch (Which would have normally caused a pain and dizziness that would have put me right back down...) And this pain would have put whoever was on the other side of that door immediately on my bad side. I answered the door.  The ladies were quite apologetic for waking me up, and said they would only take a moment since I wasn't expecting them. She proceeded to hand me this pamphlet, and she shared a Bible verse with me. Now, I'm not Christian, but I thought the theme of her visit, the elimination of pain and suffering, and the related verse humorously appropriate.

Though I feel that a certain amount of pain is a necessary element of life, she then asked me if I thought I could foresee a world without pain...I answered simply, "I sure hope so."

It was just amazing to wake up without feeling like I was just hit in the head with a cinder block. When I woke up, the only issue was a bit of swelling. (I am prone to waking up puffy anyway, so with the added issue of yesterday's prodding, this was to be expected) The swelling had caused a bit of tension on the small amount of slack in the lead wires when it was taped at the hospital. So, when my St. Jude rep called to check in on me, I asked her about this. We gently lifted the tape on my chest where the additional lead wire was coiled up and pulled out another inch of slack and re-taped it and all was good. The longer I was awake, the more the swelling receded. And there was no fever or any other signs of infection with the swelling, so I wasn't concerned about it. This was discussed when my doctor also called to check in on me and my progress. 

The rest of the day has been really good. I'm getting about a 80-90% reduction in my headache pain overall. Large portions of my day have actually been headache-free! I often, with a dark sense of humor, turn to Aaron and tell him, "I have a headache." to which he responds, "Amy, you always have a headache." We both got a bit emotional today when I said, "Aaron...I don't have a headache."

I didn't need to take a painkiller for surgical discomfort until about 6:30pm. And even then, it was just starting to get tender and I didn't want it to get worse before I had a handle on it. I'm getting used to the different stimulation channels which they programmed, which ones I like, ones I don't care for as much. I've noticed that if my headache starts to break through, I just have to change the channel and I'm good.

So far, the reduced pain has helped reduce my standard nausea, but I am still getting the HC related tearing in my right eye. (I don't think anyone told my eye that I don't have a headache atm and it doesn't have to be so sad.)

I'm pretty mobile today. Aside from the limited mobility from the cumbersome wires, tape, etc. and not wanting to dislodge the leads, I feel wonderful. Earlier today, I even would have loved to go for a short walk. A friend stopped by who had volunteered to make us dinner this evening, and brought us a lovely meal. I'm now sated, out of pain, and this evening like last night, I am feeling like I could lie down and easily find sleep. I think my body is like, "Oh, we don't have a headache...whew...let's relax!" I'm so not looking forward to the end of this trial and the wait on the road to permanence.

So end of day 2, So far so good. :)

Oh yeah..took a sponge bath earlier so I feel a bit more refreshed. I think not being able to get wet is something I underestimated the impact of during the trial.

Assimilation Successful- Trial Day One

Yesterday I received my trial leads and device.

I arrived at the Surgical Center with my mother about 9:45am for a 10:00am check-in. A few minutes after signing in at the window, they called my name to come back. I was sent for a urine pregnancy test (standard for women of childbearing age) and shown to my bed. I was then asked to change into a hospital gown (Everything off except the underwear outfit) and given a bin to place my personal belongings in. The RN started my IV and added antibiotics. A blood-pressure cuff was placed on my arm and pulse oximeter on my finger. The RN periodically took my temperature and checked other vital signs. Each team member individually introduced themselves as they asked me the standard questions and explained their role in the procedure as I signed release forms.

A few of these folks were: The Anesthesia Nurse, who explained what medications they would be giving me and how I would be partially sedated, yet alert enough to answer questions and be aware of voices and activities in the room. Her job would be to keep me as comfortable as possible. (at which she did an amazing job). The Doctor himself, went over the procedure again and allowed me to ask any questions I had. My St. Jude representative and her colleague both explained the equipment, showed me examples of what they'd be using, how it would all come together, and gave me my goals for the trial. (To read a bit, walk around somewhere...things that would usually exacerbate my headache.) The X-ray tech, a few other nurses, and even the recovery nurse. Overall, a fabulous team of folks who were no less than awesome at every step of the way. (Even went out to the waiting room and relayed messages to my mother for me when I was concerned she might be worrying if I was in surgery yet.)

Once all of the actors were in place, they show began. The  Anesthesia Nurse added some Versed to my IV to relax me for the ride into the O.R. and we were off. We pretty much all entered the operating room as a group and they all went about to buzzing around like bees in a busy hive.

I was asked to lie face down on a table with a large wedge shaped cushion and a massage table-like headrest. *My only issue and my biggest discomfort during the procedure was being just a bit too short for this setup, and the fact that I have ample breasts which refused to cooperate and find a comfortable place to hang out. So, they were a bit squished and causing discomfort, but I pretty much had to ignore it so I could remain still and calm.

A nasal cannula was placed for oxygen, and the doctor then started feeling for landmarks around my head and drawing guidelines with a marker. He called someone with clippers over to shave a small area around the occipital ridge. (So, that meant losing the bottom of my mohawk...looks like once this comes out, I'll be shaving my head completely...which doesn't bother me at all, but they still apologized to me afterward.) He removed the clippered hair with tape like a lint roller.

Next, they placed towels around my face and put cotton into my ears so the Betadine solution wouldn't run into my face (They were so considerate and often checked in to make sure I was doing ok) They then cleaned the entire workspace on the back of my head down to my shoulder blade area...even warning, "This is going to be cold."

The next thing I was aware of was just some fuzzy discussion among the team and some slight pressure here and there, but I was perfectly comfortable aside from my squished chest. Then the doctor and St. Jude rep were asking me where I felt the stimulation of the first lead and if it was in the headache area. Then they went about the business of inserting the second lead and repeated the questions for the second. They were both placed on the right side, one more occipital and one slightly higher behind my ear. Then they placed steri strips to hold the leads in place, and taped everything down. The leads were connected to the small boxes which connect the cables for the control unit leaving a small amount of slack for head movement and everything was taped in a package near my shoulder with the cables exiting the bottom to plug into the controller.

I was transferred back to the bed and wheeled into recovery. I was alert fairly quickly and I was told I had made it look easy and everything had gone smoothly.

The St. Jude representatives came to my bedside and began programming the unit, making sure to discuss each sensation and amplitude with me to ensure I'd have good options to play with when I got home. During this process, my mother was able to come in and watch. I was given a box which contained a cheat sheet for the controls, extra batteries, (The trial system uses 9-volts) a journal to record my progress for later discussions at my follow up, and a booklet about the system with dos and don'ts and a DVD. The materials that accompany the system are obviously aimed at back and other pain patients, but the info is fairly adaptable. My rep gave me her card with contact info (We'd already been texting and staying in touch, but just in case...) and let me know she'd call to check in with me but if I had any questions to call her and not wait for her call.

The recovery nurse allowed me to sit up and got me a juice of choice, which I appreciated because I had a pretty strong medicine aftertaste in my mouth from the IV meds.

The doctor came in to check on me, gave me my prescriptions, (Antibiotics, pain killers for surgical pain) a card for my removal appointment and follow-up (Which is Tuesday, making this a 5 day trial) He gave me his weekend contact info and let me know he'd be in touch to check in on me.

The nurse came back and gave me discharge instructions (basic things like don't get things wet, return to normal medications, etc.) and began the process of disconnecting my vitals equipment and removing my IV so I could get dressed. My mother assisted me in getting my shirt and pants on (I had worn a tank and yoga pants to make things easy) and I was discharged to leave. My mom brought the car around and the nurse walked me out.

The drive to my Mom's house wasn't bad at all. I was ok with bumps and turns. I only asked that she avoid braking hard as it caused me to tense up and hurt a bit.

The headache relief was pretty much instant. I played around with the programs and found one that I liked... I have noticed that when I change the program and turn up the amplitude to where I would like it...I can feel the stimulation (The tingling or massaging sensation...which is quite pleasant) for about 5 minutes and even tough I acclimate to it and it seems to not be as evident of a sensation, it still provides relief. I like this because then it isn't a distracting replacement for pain, but truly a relief.

My mom got me some lunch and picked up my RXs. I took a Percocet, my usual nausea medication, and an antibiotic. The Percocet for surgical discomfort (I would say pain...but in comparison to everyday, this doesn't deserve that title). Lucky for me, the use of painkillers doesn't interfere with my trial, since narcotic pain relievers don't touch my HC headaches.

So, with medication alleviating the surgical discomfort and the stimulation handling the headache...I felt WAY TO GOOD to be encumbered by all of these wires and tape. :)

Aaron picked me up from my Mom's house when he got off of work, and we headed home. I was smiling and we both got a bit emotional at the words "I don't have a headache." We sat on the couch to watch The Big Bang Theory on DVR and after one episode, I let him know I wanted to go to sleep....BUT for the first time in longer than I can remember...I didn't want to sleep to escape my headache, or because pain had kept me up to the point of exhaustion. I wanted to sleep because I didn't have a headache, and I was calm, blissful, and more relaxed than I could remember being in the past three years.

I'm so optimistic for the future. I had to get up early in the morning for a surgical procedure...and it was one of the best days ever! :)

This is Aaron, just got word from Amy, all went well in recovery

3 Days to go

Yesterday I had my pre-op blood-work drawn thanks to a friend who was able to take time out of his day to be my chauffeur.

When I got home, I thought it would be a good idea to call the Doctor's office and request that any prescriptions I'll be receiving for the trial, antibiotics, painkillers, etc. might be called in to the pharmacy in advance so I can have them ready to go as opposed to adding another errand that day. The Doctor was out of the office yesterday, so his medical assistant said she would get back to me.

Later in the day, when my phone rang and I saw it was the Doctor's office, I assumed it would be regarding my earlier call. But, it wasn't. She told me there was a scheduling issue with the anesthesia nurses, and they would have to reschedule my...(At this point full panic started to set in and my heart began to sink)...procedure "time". WHEW, not the date. And it turns out, it is now in the morning instead of the afternoon. I'm completely OK with that. It also means less hours I have to go awake without eating beforehand. I sent a quick text to confirm the time change with my St. Jude rep and all was good there. She let me know she'd be arriving early to talk to me about a few things before the procedure.

As I was typing this, the MA called and let me know the Doctor would prefer to give me the prescriptions the day of the procedure. - Oh well, not that big of a deal, I was really just trying to avoid that stop on the way home. My Mom and sister are driving me that day, and I had hoped to make it as streamline as possible.

So, the next three days will be spent spending some quality pre-cuperating time with those close to me and some last minute grocery shopping.

Still excited/nervous/excited/nervous/excited.

On the headache front- The past month has been worse than usual. More couch days per week than I've had in a while (With a menstrual migraine tossed into the mix for added fun). There are a few things I can attribute this to...but I've also noticed it is somewhat of a pre-stim trend. I think the head gnomes know what's coming and they're not happy about it. Laughter, physical activity, and high emotion can exacerbate my headache, so I'm sure one factor here is the stress, anxiety, hope, and roller-coaster of other feelings that go along with the possibility of effective treatment. Either way, it is making the time crawl... Friday can't arrive soon enough for me.

I've joined and have been following posts in the Occipital Nerve Stimulation group on Facebook. Great group of like-situation folks for Q&A, sharing, and general support. It is bittersweet as well, with the common thread of insurance denials, appeals, and hope of eventual approvals and pain, recovery, and relief. But, nevertheless, another great resource for which I'm grateful.