I’ve been staring at the infamous “Drawing Board” for awhile now. So far I have done/tried the following since the infected DRG stimulator was removed:
Gone back to pelvic floor therapy, which I had gone to in early 2015 after the mass/fallopian tube was removed from my groin area. I’ve been doing the exercises every day for a month now, with about 20-30% relief, but still with pain flares (like these last few days). The amount of swelling in my upper leg is very confusing to me, especially when we do specific exercises for the swelling. I am waiting to hear about a tens unit to see if it would help at all.
Met with my gastroenterologist since passing of bowel seems to throw gas into the fire. We’re working to make my stool as soft as possible, but since that mass was removed, the final turn in the sigmoid colon is at a 45 degree angle instead of a right turn.
Gone to a pain management psychologist who wanted me to do a six week program, but my insurance won’t cover it.
Today I requested a pelvic MRI – because I’m really starting to wonder if there isn’t something else going on.
I’m also meeting with Dr. Sayed to talk more with him about a third stimulator, which, unfortunately may be my only option. It isn’t ideal, but is the only thing that has worked (if only for a few months). He had told me I have to wait two months before I could try again. That time is coming soon, and if I’m going to try it again, I’d rather do it sooner as I’d like to be able to walk down the aisle on my wedding day (not be limping or dragging my leg)
During all of this, I’ve been on short term disability. In a very round out about way, my work has let me know that my department has been “restructured” – and in so many words, that my position is no more. This is part of the policy, and I get it. They are happy to discuss “available options” when I return. I honestly doubt that I will return at all as I am nearing long term disability, during which they are able to terminate me. The whole thing is a mess.
More than anything, I’m trying desperately to focus on my mental health during all of this. As many of you know, it is easy to get sucked into a very dark place when your health is failing. S0, when I’m feeling up to it, I’ve been trying to do small projects, like making my fiancee a photo album off his childhood pics, starting seeds for our garden in a tray, and focusing on the wedding. Anything to stay busy and not get swallowed up by sadness.
I am very curious to hear what you all think about the possibility of a third stimulator – please let me know in the comments below.
If I’m telling the truth, the new stimulator was just not working the same as the first one unfortunately. I was frustrated and had a few different adjustments, but it just was not taking care of the pain like the first one. We’ll call it the 80% experiment that would soon go wrong.
It was Monday of this week around lunchtime. My mom had come by work (which I had just returned to) for us to go and have lunch together. That’s when I noticed that my implanted battery felt like someone had reached inside and twisted it around. It was burning and it soon hurt like hell. From then on the pain grew worse and by the time I got in the car to drive home I was in screaming pain. The pain had spread up my spine as well.
An after hours phone call from Dr. Sayed led to a first thing visit the next morning.
Overnight, the device, leads and incisions were obviously infected. A red, raised rash with a fever had formed. I was also running a fever at this point.
Dr. Sayed took one look and said I was being admitted through the emergency room. And that the device would likely need to be removed today.
I was in disbelief, as was my fiancée, Brian. How could the surgical site become infected nearly five weeks after the surgery?
The next thing I knew, I was prepped for surgery and in the holding room. Now, this is when 50 people come in and all talk quickly and loudly. Ok, not 50, but for the size of the room it was too much. I started to panic. The anesthetist immediately injects versed to calm me down. And then I’m off to surgery.
It’s amazing how quickly everything happened when you consider how long you wait for your surgery to even be scheduled. But that’s another story.
It turns out I had a staph infection. Luckily, it was MSSA. The device was removed and the entire area cleaned out.
I spent the next 3 days in the hospital being pimped full of antibiotics and pain meds. I ordered whatever I wanted to eat from the glorious hospital menu. Because why not at this point?
So, three surgeries later and I’m back at square one. I do want to be clear that the doctor and Herb informed me that I was the first to break a device and first to have an infection. So this is not the norm.
But now I am waiting for the inevitable: the old pain to come slithering back (which has already started) and wondering what on earth to do next. Dr. Sayed said we could redo the surgery in a couple months, but I feel like my body just does not want that foreign object.
I wish that the old pain would just be minimal and I could find a different way to address it. Only time will tell.
So yeah, I’m discouraged. Anyone would be. Thankfully I have a pretty good support system of family, Brian, and friends.
I was finally able to get in for my revision surgery to remove and replace the second lead on December 20th. Christmas was spent at home in pj’s.
They kept the same battery and another set of staples (now removed). Also, went back in on lower spine for leads.
The main things I’ve noticed are being sore in additional areas, like around where my leads are anchored and more general back pain – plus the operation pain.
Secondly, I seem to get worn out easily.
Other than that, it hasn’t been too bad. A few moments in the beginning of the horrible pain.
Now I’m 11 days out and getting there slowly but surely.
You can’t shower for a week, and you can’t bend over a sink or tub, but I did figure out how to wash my hair without getting bandages wet: wrap a towel around your waist (covering bandages) and secure it with a belt. Then take a trash bag and make a hole just big enough for your head and arms to get through. Now you can get in the shower! Sounds silly but when you’re desperate, you get creative. Sponge bath sitting on the edge of the tub with some help worked for me.
I was at work on a Monday afternoon, going about my usual marketing work. I started feeling shooting pain in my groin. Then my hip. Then my back. It was like the old days before surgery.
The next day I met with Herb, my rep From St. Jude. I figured he would tell me that he could just make some adjustments to the stimulator to fix it.
But instead I heard him say, “Well, it definitely looks like one of your leads is either dislodged or broken.”
I’m sorry, what now? Broken?
My mind searched for a reason. I had gone to the chiropractor (yes, you’re allowed to ask what the hell at this point) for my neck and shoulder that had been giving me trouble for a couple of weeks. I told him about my stimulator and to stay in the upper back region only. Which he did.
Herb said that the visit was probably the cause.
I cussed myself out in my head. What the hell was I thinking?
But I was also thinking, “How often does this happen?”
He let me know that I’d probably need a “revision” surgery. Which was comical to me. You revise a paper, not a surgery.
Then he told me they’d probably have to start all over. That sounded more honest and realistic.
And now, I wait. I haven’t been given a surgery date yet, but they did say that these “revision” surgeries are usually priority. We shall see.
In the meantime, I am trying to focus on what I’m thankful for this week with it being Thanksgiving.
My fiancée did surprise me over the weekend with a much needed getaway to The Elms Hotel and Spa. It was so nice and took my mind off the surgery.
First, I want to thank everyone who has taken the time to read this blog and the comments that have been made! My main intention is always to help anyone that I can escape the hell they may be going through.
Second, I wanted to share a couple of photos from a recent trip with my fiancee, Brian, to show you all that there is hope for your fight! Every surgery and story is different, but I hope that you can experience the taking back of your life. Life without pain medication, life without missing important and fun events. But instead, enjoying life to the fullest again!
So, here we go:
Hiking in the Black Hills – about 13 miles total over 36 hours. I’m not saying this will work for everyone, but when you’re four miles out and your body isn’t screaming, it’s pretty miraculous!
Climbing the ladder in the Badlands – for me this was a huge feat as stairs in general were a nightmare before. And of course, getting to the top and seeing the view is also pretty spectacular!
to relieve my pelvic pain after yet another pelvic surgery (the fifth to be exact). The latest ordeal involved a Pelvic Pain Specialist removing a fallopian tube embedded in scar tissue between my pelvic wall and colon – three years after a full hysterectomy. (How does that even happen?)
Not long after the mass was removed, I started having severe nerve pain in my groin, hip and lower back. Pain that traveled to my toes and vibrated like a live wire. My hips were at a permanent angle, and I was limping around like I had sprained something. It was embarrassing.
Over a year I tried:
Three attempts at physical therapy
Medication (nerve and pain)
A pain psychologist
A nerve specialist (who confirmed damaged nerves)
I was done. I had given up. I figured I was just going to live like this. That’s when I landed at the KU Medical Spine Center.
And when Dr. Dawood Sayed mentioned DRG (Dorsal Root Ganglion) Therapy – a new type of spinal cord surgery, I balked at the idea. But after two more weeks had passed and I was missing work again because of the pain, I pushed my way back into his office and he explained in more detail how the device works.
Already common in Europe, the DRG Therapy is new in the U.S. – so new that I later find out I’m among the first 20 in the states to have the device.
From the St. Jude Medical site: “By stimulating the DRG, a spinal structure densely populated with sensory nerves that transmit information to the brain via the spinal cord, the St. Jude Medical Axium system delivers a form of spinal stimulation that gives physicians the ability to treat the specific areas of the body where pain occurs. As a result, DRG stimulation is a first-of-its-kind therapeutic approach that provides pain relief to patients with neuropathic conditions underserved by traditional SCS who have tried multiple treatment options without receiving adequate pain relief.”
Sounds a bit invasive, yes?
But the game-changer is the fact that you can test this device out before having it implanted surgically. You wear everything that would go in surgically on the outside for five days and decide if it’s worth it to have the surgery.
And that’s exactly what I did. I was rolling the dice, but I had the choice to opt-out if it didn’t work.
On the third day of the trial, after procedure pain had finally subsided, I had my rep adjust the device to see if I could get more relief. (Yes, you get your own rep to contact throughout in case you have a question or an issue!)
I stood in the waiting room of the doctor’s office with Herb Adee while he made adjustments on a remote to my device.
I was feeling torn now about whether or not it would work for me. I had gotten about 30% pain relief, but was still having a good deal of pain in my hip.
“OK, try it now,” Herb instructed. I gently kicked my leg forward and back to see if there was a difference. And just like that,
the pain was gone.
My eyes welled up, and I hugged Hank fiercely. I couldn’t believe it.
The one thing about transitioning from the trial to the actual surgery is there’s a waiting period. Since this is a new procedure to the US there is plenty of paperwork and insurance mumbo jumbo to deal with. And during that time you’ve had a “taste” of the pain relief, but now it’s back. But soon enough, the surgery was complete and I was home recovering.
There was some pretty gnarly bruising and pain. A tiny pessimist in me nagged a bit with things like, “What if doesn’t work after all?” and “What if the battery is in a bad spot?”
But it wasn’t the case at all. I have my own remote and can adjust things as needed. And, my hips have slowly gone back to their normal resting place, I can walk quickly with no pain, and I can even sleep on my stomach again. And, I’ll be blunt here, for the first time in a over a year sexual activity doesn’t hurt. It’s like I found the pot of gold at the end of the pelvic rainbow – and it’s real.
In short, I have my life back – and when asked how much pain relief I’ve gotten by Dr. Sayed, I was able to say 90%. NINETY PERCENT!
I thanked him profusely. He gave me an option when I thought I head hit a dead end. (It also helps that I happen to have an extremely patient fiancee).
And so yes, for the record, I highly recommend considering this new technology. You can even have the device removed if over time you no longer need to turn it on. The ability to be in control of the device is phenomenal. I hope it can change your life, too.
Random tips for DRG Therapy patients:
Don’t try to lean or twist during the trial or recovery. It’s not worth it. One day during the trial I quickly turned in the kitchen and caught my battery cord on a drawer pull, effectively pulling the lead about a half inch. Not cool.
Sleeping during the trial is a bit tricky as you have to find a comfortable spot and it may be difficult.
Be prepared for sponge baths!
Don’t let your bandage get wet or sweaty.
Be sure to test out a fake battery (they will give you one) by taping it in different areas on your lower back.
In regards to the airport: they will give you a card to show when you go through the scanner.
Keep you remote and charger on you!
Lastly, if you have any questions, please feel free to reach out to me below!
Things I’ve wanted to do for a long time that weren’t possible before my surgery: