EndoBot, What? Lauren's Spinal Stimulator Update

By Lauren Iacobucci

Meet Lauren! Lauren is our amazing EndoSister Program Coordinator, she's got better matching powers than Tinder! Lauren is passionate about her role with QENDO because of her ability to help others going through the often tumultuous journey that is endometriosis, adenomyosis and PCOS. Lauren has written for the blog previously about her experience with having a spinal stimulator for chronic pain management, which you can read here, and in this piece will provide an update on her experience and how she's pulling through a difficult time in her endo journey. 

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 When the stimulator was first suggested, I thought it would be a ‘cure all’ and the answer to solve all my pain. Oh sweet, naive Lauren.

Once the surgical pain subsided from the stim implantation, the first 8 weeks were good. It didn’t take long to realise that my pain had improved immensely and I was over the moon. Until I wasn’t anymore.

I wish I could say my health has been on an upward trajectory, that life was nothing but rainbows and sunshine since my last blog post, but unfortunately it hasn’t.

At the 8 week mark, I slipped. I didn’t hit the deck but I jolted myself upright and immediately felt what I describe as a ‘twang’ and pain in my back around my stimulator battery site. I was so scared that I stuffed up my stimulator leads. After this, the stimulation and my pain coverage changed, I could feel the buzzing in strange places in my back and I knew something was wrong.

An X-ray eventually confirmed that my right lead had not only slipped slightly, but fully been pulled out of its spot. My doctor hadn’t seen this happen this severely before. I had my first stimulator revision surgery on March 6th and it was a horrible day. My mental health had plummeted, I had an anxiety attack while waiting to go into surgery because I was left waiting so long and to make it worse, the surgery itself took 2 and a half hours, instead of the expected 30 minutes. Waking up in recovery, my pain levels were extreme. It seemed like no amount of drugs could get on top of my pain and my tears turned into hyperventilating, until they gave me enough drugs to eventually knock me out. Finally, some peace. 

Staying in hospital overnight when my mental health was at a low point was one of the most lonely things I have ever experienced and I just wanted to go home to my husband. Luckily I knew 2 of the girls who were also admitted to the same hospital that night. One of them helped me put my pajamas on, tucked me into bed and listened to me while I cried and that somehow got me through the awful night. 

As if this experience wasn’t traumatic enough, my wound decided it wouldn’t heal. 3 weeks after my stim lead revision surgery, I had to go in for another surgery to debride the wound. But wait, there’s more. 

The day of my debridement, I also found out that my stim lead had AGAIN migrated out of its correct spot. This time it was the left lead though. Yet another disappointment.

Booked in for the next stim lead revision on May 14th and if possible, it was an even worse experience than the first revision. The provided pain relief was minimal and I felt like I had to fight to be heard. Being alone in hospital, I felt neglected by the doctors and nurses, isolated, alone, depressed and just fed up with everything and I could not stop crying. I thought I felt alone the first revision, but this was an even worse feeling.

From there, it’s continued to be an uphill battle. While I am relieved that recent x rays confirmed the leads are in the correct spot in my sacrum (this is the longest they’ve stayed in place,) I’ve still had issues with my wound healing. 

I’ve had to have surgeries to debride the wounds and at the same time, to try and bury the excess length of leads deeper so they stop trying to work their way to the surface and stop poking out. Each surgery seemed to go okay until the stitches were removed, then the tissue would start breaking down and the cycle was repeated. All up I’ve had 5 surgeries just for the wounds and each subsequent surgery I found took a bigger toll- physically and mentally on me.

I know that I should be happy the stimulator has been successful in fixing one issue- my pain, but I can’t help but feel like it’s caused 100 more issues at the same time. My mental health has been the most fragile it’s ever been and it’s taken a lot of strength to somehow get through the last few months. I’ve had to deal with multiple surgeries, doctor appointments, pain and on top of all that, I haven’t been able to work since February. I’ve felt defeated. At a very low point, ready to give up on the stimulator because of all the issues, and pretty fearful that I’m gonna have this wound forever, I decided to see a plastic surgeon. He described the wound and surrounding tissues as ‘traumatised’ from the last few months and this has caused a hyper-granulation response. If left, it would not heal by itself. So while I wasn’t keen on more surgery, he opted to treat it with silver nitrate and special dressings.

And then something happened.... just when I was accepting that bad things would keep happening, I noticed a glimmer of hope that maybe things would get better. My wound is already showing signs of improvement which has shocked me and I’m doing my best to hold onto that hope and fighting to get my life back. 

A gallery showing some photos from Lauren's journey, including the first and second lead migrations, and her pelvis now, with the stimulator leads sitting in a better position.