EndoBot, What?
By Lauren Iacobucci
Lauren's Experience With Spinal Stimulation for Pain Management
EndoBot, what?
My name is Lauren.
I have endometriosis.
I also have some cool robotic hardware in the form of a spinal stimulator.
This is how I got the name EndoBotLauren.
I’ve always experienced painful and troublesome periods. When I was 18, a doctor mentioned ‘endometriosis’, put me on the pill and said that will sort it out. It wasn’t until last year when the pain hit me one day at work, and literally knocked me off my feet. I lay on the floor in the fetal position and waited for the pain to ease. It didn’t! A trip to my local GP determined I had a urinary tract infection, so was given antibiotics and encouraged to take Ural several times a day. Again, this didn’t help. I got in to see my gynaecologist who said my symptoms don’t sound like typical endometriosis, but she still agreed to do a laparoscopy and I was booked in for the next week. After my laparoscopy, my gynaecologist confirmed there was endometriosis found ‘everywhere’ but it was all excised, so I should start to feel better. Once I recovered from surgery, my pain improved and I moved on with life. In February this year, I was once again at work when the pain knocked me off my feet and I couldn’t do anything but cry. I ended up in the emergency room where I had blood tests and ultrasounds to check for appendicitis, torsions or an ectopic pregnancy and they found a cyst. I was told that in ‘normal’ people cysts are harmless and not painful, but with my history of endo, I must be a bit more sensitive. The emergency doctor also concluded that he wasn’t sure what to do with me, so decided to just discharge me with the advice to see my regular gynaecologist.
My gynaecologist decided not to do another laparoscopy as I’d just had one a few months prior so the plan was to just monitor and hope the cyst went away by itself. Which it did but my pain never improved. Since then, it has been a constant battle of trying to manage my pain and at 26 years old, I was officially diagnosed with chronic pelvic pain. I’ve tried various medications, acupuncture and pelvic physio. In July this year, I was at a very low point in my life, ready to give up as I was sick of being in so much pain every single day. I made the decision to go and see a pain specialist, and it was the best decision I’ve made. I went into my appointment in tears but came out hopeful. We tried a spinal block and ketamine infusion but unfortunately for me this didn’t work. His next suggestion was a spinal cord stimulator.
A spinal cord stimulator (SCS) is a Neuromodulation device that is surgically implanted. It includes a small implanted pulse generator (IPG) connected to electrodes/ leads to deliver a small electric current to the spinal cord that interrupts the pain signals being carried to the brain.
A spinal stimulator is a last resort for patients diagnosed with chronic pain that is uncontrolled by more conservative methods.
The spinal cord stimulator process is done in 2 stages- the trial and the permanent.
The trial takes place over a week and the purpose is to test if the stimulator is successful at treating each patient’s individual pain. The trial is less invasive than the permanent as only the leads are implanted with x-ray guidance and under anaesthetic, and the leads are then tunnelled out of the skin, secured with stitches and connected to the stimulator device which is then worn on a belt around the patient’s waist. This ensures it is easy to remove if the trial is not successful. With the permanent stimulator, both the leads and the stimulator are implanted and internal, so nothing is worn on a belt.
Both the trial and the permanent implant require an overnight hospital admission. Once admitted for the procedure, I received an enema to clear my bowels and had to shower with special surgical soap before being taken into the operating theatre.
The day after the implant and prior to discharge, the trial stimulator is connected up and the company rep adds different programs to try. The week of the trial as the leads are external, you cannot have a shower due to the risk of infection and it is recommended that patients try and carry out all normal activities, including work. I’m a registered nurse and I work in the operating theatre, so it was decided I couldn’t go to work as my job is physically demanding and wouldn’t be possible without compromising the trial period. A reduction of pain by 50% or more during the trial is deemed to be a success. During my trial week, I only had 1 pain flare up that was difficult to control and 2 minor flare ups, so my spinal stimulator trial was deemed to be successful. At the end of the trial, the stitches are removed and the leads are simply pulled out while lying down in the doctors rooms. No anaesthetic or pain relief is needed.
As my trial was a success, I was booked in for the permanent implant a few weeks later.
The day of my permanent implant, I again received an enema and had to have my surgical soap shower prior to going into the operating theatre. It was also done under anaesthetic and x-ray guidance, so I don’t remember anything about the procedure. I woke up in recovery and it took quite a lot of pain relief to get my surgical pain under control before I could be taken up to the ward. I had pain with the trial insertion, but this was worse because there were more incisions made. I had a couple smaller cuts on my bottom and then a larger one on my lower back where the stimulator unit was implanted. Thank god for pain relief!
The next day, the stimulator was switched on and a few different programs were set. I was shown how to use it and given a remote so I can turn the stimulator on and off, turn it up and down or change between programs. I was also told I have to be extra careful with my movements to avoid the leads moving so no bending, twisting or lifting for the next 12 weeks until everything heals and scars into place.
The surgical pain for the first 2 weeks was absolutely horrible. I involuntary let out a little scream whenever I moved, lay down or sat down. Endone, Panadeine Forte, Ibuprofen and ice packs became my best friends during this time and I couldn’t help but wonder if all this surgical pain would be worth it. A week after my surgery, despite my surgical pain, I noticed that for the first time in a VERY long time, I had none of my usual pelvic pain and I nearly cried with happiness.
I’m now six weeks post-surgery, my surgical pain has reduced and my normal pain has improved by around 75% which I am absolutely thrilled with. I still have the occasional flare up but it’s no longer a 10/10 pain. I find my flare ups much easier to deal with now and if struggling, I can change stimulator programs on my remote until I find one that eases the pain.
There are different brands of stimulators available. Some don’t have a rechargeable battery so they need to be replaced every 5-7 years. The stimulator that I have is a Boston Scientific and is rechargeable. It can stay implanted for up to 25 years before needing to be replaced.
My remote screen has a battery icon just like a mobile phone that indicates how full my stimulator battery is. The company rep advised that when I see the battery has dropped a bar, I should charge it. There is a charging ‘puck’ that sits in its own charger when not in use, like a landline telephone sits in its base. I simply remove the puck from the charger, turn it on and hold it over my stimulator site (there is a belt that it goes in so I don’t have to hold it.) The charging puck beeps until it’s in the correct position over my stimulator and it takes about an hour to charge.
To have a spinal stimulator inserted in the private health system, the total cost is estimated to be $50 thousand though the costs are fully covered between Medicare funding and private health insurance. Medicare cover a smaller percentage of this cost and the remainder is covered by the patients private health insurance. The only out of pocket costs I had to pay were the surgeons fee and anaesthetist fee.
My recovery has been frustrating due to the no bending, twisting or lifting rule. I’ve really struggled with having to rely on others so much, with not being able to do things myself and not being able to work. I’m not able to do my usual nursing duties, but I’ve recently started back at work on limited hours and light duties. If I had a less physical job, I could have been cleared to go back to work a lot earlier, but it’s been difficult to find appropriate tasks for me to do. I’ve been cleared to return to normal duties from January 8th, so I haven’t got very long to go. Around the house, I’ve been very reliant on my husband to get things out of cupboards for me, to pick things up off the floor and to do a lot of the housework that I can’t do while recovering. I’ve had to remember to bring my stimulator remote everywhere I go because at the start I kept forgetting where I left it. Now I keep it in a pouch clipped to me to avoid misplacing it.
I also struggle to remember to turn the stimulator off when driving. The reason for having to switch it off is that the stimulation can be positional. I can feel it in one area and when I change positions, the stimulation can to a different area. This has happened where the stimulation has moved down my leg and I’ve fallen over. If this happens while driving, I could lose control of my car and cause an accident. If an accident did occur while my stimulator was on, I also wouldn’t be covered by insurance. I’ve had to put a sticky note on my steering wheel to remind myself to ‘turn stim off’ so I don’t keep forgetting.
Since getting the permanent implant, I’ve also been able to cut down on the medication I was taking. I haven’t needed to take Endone or Panadeine forte in weeks, I stopped my Gabapentin and am currently in the process of weaning off my Endep.
The only pain I have left from the surgery is around the implant site. It’s still very tender to touch and feels bruised, especially since the waist of post pants sits right on this area. I’m still icing it regularly and I’ve just bought some arnica cream to see if it helps.
My mood has improved so much the last few weeks. I feel like I’m slowly becoming myself again and I no longer live in excruciating pain everyday.
You can follow Lauren on Facebook here and Instagram here to follow her journey and find out more about the spinal stimulator.
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