DRG Stimulator Surgery Update: Taking Your Life Back

Just a quick update for those following along.

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!

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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!

climbing-the-badlands-ladder-after-drg-surgery

Thanks for reading – wishing you pain-free days!

The Moment When DRG Spinal Cord Stimulator Therapy Changed My Life

dead end pain
I had tried everything

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
  • Pelvic therapy
  • Medication (nerve and pain)
  • Chiropractic work
  • Massage therapy
  • A pain psychologist
  • Steroid injections
  • Nerve blocks
  • 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.

hf10 spinal cord stimulator trial

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?”

hf10 spinal cord stimulator

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:

  1. 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.
  2. Sleeping during the trial is a bit tricky as you have to find a comfortable spot and it may be difficult.
  3. Be prepared for sponge baths!
  4. Don’t let your bandage get wet or sweaty.
  5. Be sure to test out a fake battery (they will give you one) by taping it in different areas on your lower back.
  6. In regards to the airport: they will give you a card to show when you go through the scanner.
  7. Keep you remote and charger on you!

Lastly, if you have any questions, please feel free to reach out to me below!

Update: 

Things I’ve wanted to do for a long time that weren’t possible before my surgery:

hiking-after-drg-stimulator-surgery
Hiking in the Black Hills
climbing-the-badlands-ladder-after-drg-surgery
Climbing the Badlands ladder

Exposed Roots

Screen Shot 2016-03-24 at 11.23.52 AM

I’ve always been fascinated by a tree with exposed roots

The way they just continue to stretch and grow without soil to protect or properly water them. Somehow those roots are still able to support the trunk.

And that’s kind of how I’m feeling these days. Like the roots and nerves in my left side are exposed and raw. And have been for a year now.

Sure, I’ve had some good stints. And an awesome relationship has been a great distraction.

But since last March, I’ve dealt with (now) 5 different doctors. My original surgeon, a spine doctor, a nerve specialist, another pelvic pain specialist and now another spine doctor.

The new spine doctor looks like a J. Crew model. Perfectly shined shoes, a fresh haircut and a crisply starched shirt.

After hearing my story (the abridged version), he actually goes all the way back to the beginning of all of it: the endometriosis and PCOS finally leading to a full hysterectomy. He asked several questions. This was the first time a doctor outside of the surgeon had really wanted more info about the root of the cause.

Momentarily, a tiny glimmer peeked its head out from deep within that this doctor might actually help me if he was willing to really hear all of the details.

But within minutes he was rattling off terms like “spinal cord stimulation” and “sever the nerve.”

“We don’t normally consider that treatment for someone your age…”

Ah. There it was again. I’d heard the same damn thing when I was begging for a hysterectomy. Medical professionals have a great way of insulting you without really meaning to.

My insides sighed as I daydreamed about getting to lay down after he was done prodding me.


So, where the hell can I find some soil and a good watering can to fix this once and for all?

Because the difference between me and the tree trunk is it doesn’t have to go to work, climb stairs, have sex and just… exist.

Side effects include…

July 13 arrived, and I knew the date rang a bell for some reason. Then it dawned on me: it had been six months since surgery.

It had also been more than three months since the pain somehow shifted into my hip and side, set up camp and created a whole new hell. The pain twists around my left side, burns down my hip and then splits and darts directly under my rear and all the way into my toes. 

Ridiculous Lyrica commercials pop into my head when the doc mentions nerve pain. Something causing my piriformis muscle to swell, affecting the nerves around it.

Imagine a thick rubber band is pulled taut that starts at your hip and runs into your foot. Now imagine it vibrating electrically all day long. 

The Mri and cat scans? Normal. 

At a recent massage to help relieve pain, the masseur starts asking me about what I’ve tried.

Cortisone injections?

Yep.

Physical Therapy?  

Yep. 

Muscle relaxers? 

Yep. 

Ice? 

Yep. 

Ibuprofen? 

Really?

I have not yet tried hanging upside down on an inversion table, but if anyone has one please let me know! 

My last physical therapy appointment is next week and then I am out for the year.

I have theories on how this happened. Like once they removed my mass, my pelvis shifted. Or maybe scar tissue has built back up, affecting the nerves. 

The one (major) saving grace is a wonderful man who has come into my life and made the whole process more bearable. He helps take care of me and encourages every day. I am so grateful. 

But not being able to do things together, not be able to walk around for more than hour, or even sleep on my back gets really old – beyond frustrating. 

I can only hope this nightmare will end soon.

End of the line

Before you even realize

The doors have slid shut

No turning back now

The train sweeps you away 

And it’s packed inside

No room to breathe

Grasping at a slick pole

Pitched forward and back

And the pain here grips beyond the physical

It reaches in and smothers every crevice of your soul

And each time there is a jolting stop, your body can’t seem to move

Holding on for weeks and months

Pleading for the end of the line

And doubt creeps in and whispers

Maybe it just never really stops

 

Pelvic Floor Therapy. Huh?

“Now, what is it again that you’re doing?”

pelvicI’ve been asked this question a few different times. And believe me – I, too, was baffled about what the heck it was I was going to do. But after my latest surgery, the doctor insisted I go. And now I wish I would have had the opportunity to go years ago.

So, what is pelvic floor dysfunction?

Pelvic floor dysfunction refers to a wide range of problems that occur when the muscles of the pelvic floor are weak, tight, or there is an impairment of the sacroiliac joint, low back, coccyx and/or hip joint. The tissues surrounding the pelvic organs may have increased or decreased sensitivity and/or irritation resulting in pelvic pain. Many times, the underlying cause of pelvic pain is difficult to determine. The pelvic floor is made up of muscles and other tissues that form a sling from the pubic bone to the tailbone. They assist in supporting the abdominal and pelvic organs, and help to control bladder, bowel and sexual activity.

Specific conditions:

  • Abdominal pain
  • Adhesions
  • Cancer rehab
  • Chronic prostatitis
  • Constipation
  • Endometriosis
  • Fecal Incontinence
  • Interstitial Cystitis
  • Lymphedema
  • Male pelvic pain
  • Painful intercourse
  • Post-partum pain or weakness
  • Pregnancy back or pelvic pain
  • Urinary incontinence
  • Vaginismus
  • Vulvodynia

I was amazed when my new physical therapist told me that in Europe, this therapy is basically required after several types of surgery. I can only wonder how this would have helped me sooner, and my friend Kenna.

I had become so discouraged and impatient with the length of time it was taking for me to recover from this surgery. My operation was January 13, after all. It’s been almost 8 weeks. But I was relieved when, during my second visit, the therapist explained that I had at least another month to go. Because of the amount of adhesions removed and the location of the mass, I was a piece of work.

She also told me I would be riding the roller coaster of good days and bad. And it’s true: one day I’m doing ok. The next, I’m in hell. And not to overwhelm you with TMI, but anytime my bowel moves through the sigmoid colon (where part of the mass was attached), it’s very painful.

So what is it that I’m doing in therapy? Imagine kegels on steroids with deep breathing, some yoga positions, stretches, massage, an several other things. And this is just the beginning – there’s more to come. Oh, and did I mention coconut oil? Yep. After showering and at bed time.

I’ve missed work, time with friends, and I sometimes feel guilty about it. But I’m learning that I can’t just shove my way past the healing process. Sometimes I have to just be still and rest.

 

 

Disbelief is Putting it Mildly

pelvic pain

“I was wondering if you all had gotten my biopsy results back yet?” I asked the young nurse.

“Yes, I have that right here,” she said, shuffling papers over the line. “OK, according to the biopsy, it was a hyrdrosalpinx fallopian tube…” she trailed off.

“What? Are you sure?” I countered. Surely she was reading from the MRI report.

She read it to me two more times. We were both in disbelief.


 

Later that evening I lay on the couch going over and over the information in my head. How could this be? Who was to blame?

Then I started remembering details from my left oophorectomy from 2010, an ER visit later that year where a scan revealed an issue with my left side (you may recall this from a blog where I basically told the doctor her radiologist was an idiot). You may also recall my struggle to recover from the oophorectomy.

It became clear in my mind which surgeon was the culprit. Yes, the same one who accused of being an addict when I was still in pain after his operation. Oh, the irony.

A month after my laparoscopy, I finally got to sit down with the pelvic pain surgeon, Dr. C. I soon discovered that not only did I have a mass with a fallopian tube embedded, the mass was in fact attached to my sigmoid colon and pelvic wall. No wonder I was still having pain issues. Dr. C. informed me that she also spent an hour removing adhesions.

I told her my story about the oophorectomy, ER visit, etc. Her eyes grew bigger and bigger. She was finally understanding. It didn’t make sense to her either, and she quickly requested operative reports from the doctor in question. Next week I will begin 12 weeks of pelvic floor therapy, which requires a valium – and not taken the normal way.

In the meantime, I have been actively seeking an attorney, and am very disappointed to report that 9 out of 9 lawyers has turned me down. #9 was the only one to explain why: apparently there is a 2 year statute of limitations on medical malpractice cases, and most plaintiffs do not win. There were other financial reasons I won’t go into, but I think it’s safe to say I don’t have a shot in hell.

It sickens me that a medical professional can get away with something like this. The truth of the matter is this: I don’t want money. I want an apology. An apology that will never come.