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.
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
BOTOXWe 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.
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.
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 CANNABISAnd 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.