Two Years Later

Hi everyone!

I haven’t posted in a long time, but wanted to let you know where I’m at now.

It’s now been two years since my third stimulator was implanted, and I continue to lead a normal, 95% pain-free life. Here are some of the activities I’ve been able to do/participate in:

• Full exercise regimen three times a week since January. The only machines I don’t use are the torso twist and the back extension. I walk on the treadmill, run on the elliptical and use several different weight machines (nothing too heavy)
• Bicycling with my husband up to 3 miles at a time
• Hiking various elevations along the Buffalo National River
• Canoeing the Buffalo National and Gasconade Rivers

I honestly never thought I’d be able to do any of these things again – so yes, there is hope! Take good care of yourself!

Quick follow up

Just a quick note to follow up on my last post.

On the third reprogram of my stimulator, my rep tried something random just to see what would happen since I had been suffering for over a month: he turned off one of my leads completely. And just like that, I was back to normal!

The theory is that when I slipped on the steps in early December, the coverage changed slightly, causing that lead to kind of grip my pelvis and groin without me realizing it. The constant grip aggravated all my old pain areas.

The surgeon assumed my battery was faulty and wanted to go back to the table!

Long story short, don’t give up on the reprogramming. It might take a few tries!

I am so thankful to be back up and running!

A Not-So-Momentary Relapse?

Nearly 2 weeks ago I was at work leading a meeting on the company’s new website that was about to launch. I went from fine to burning pain near my battery and in my hip.

Since then I have  been to the spine center twice, only to see the nurse practitioner and meet with a different rep who informed me that my stimulator is still working. X-rays show that my leads are still in the right place as well.

It’s situations like this where you get people (namely medical professionals) looking at you like deer in headlights and like you’re nuts. It’s absolutely infuriating.

I’m laying here tonight feeling defeated after trying about 10 different remote combinations. I just don’t understand. Sure, they can chalk it up (aka grasp at straws) to a little fall I had over three weeks ago which left me with no pain in the following days. Or maybe I just need “reprogrammed” – like a robot. Yes, I’m feeling cynical.

This is a first for me. And I have to wonder: has anyone else experienced this??

The Now

Married!

Hi everyone!

If you’ve been following along, then you know that one of my big goals with pelvic pain treatment was to able to walk down the aisle without pain (or a limp!) on my wedding day. That day and an unbelievable honeymoon have finally happened and I am so thrilled to report that I was not only able to walk down the aisle, but I also spent that night dancing the night away!

Our honeymoon also included several adventures that required strength and stability – and I was able to do them all! I wanted to share a few photos – hopefully this will inspire you and/or give you hope for your own healing. Enjoy!

(scroll over images for caption – click to expand)

Climbing up the 120 steps at Tulum Ruins! (should have worn tennis shoes)

At the top of Tulum Ruins with my new husband

Dancing the night away!

Married!

Walking down the aisle with my Dad

Riding bikes in Tulum (never would have been able to do that)

Able to finally walk down the aisle!

Just a quick note since I haven’t been on in awhile.

If you’ve been following along, you know that one of my main goals with my last surgery was to be able to walk down the aisle and marry my best friend. That dream is becoming a reality this Saturday! Needless to say, things have been going really well with my new stimulator. I rarely have a flare up anymore and they are mild when they do occur.

i am so incredibly greatful and thankful! I hope you are all doing well and living with as little pain is possible!

Cheers

 

One month post surgery #3

Hello again!

I decided to wait awhile before I reported back on post surgery status so I could give a more accurate report.

First off, my battery could not be placed in the same “pocket” as the first two. So my only choice was above the waistline on the right. Apparently placing the battery on the same side that is affected doesn’t work due to wiring of the leads.

I didn’t think much of it at the time we discussed the spot. But let me tell you that the pain and recovery were definitely increased due to the location. It was about an extra week of dealing with that pain. Plus, there wasn’t a whole lot I could wear for bottoms that didn’t rub and make it worse. I figured out that a cotton maxi dress was the most comfortable. Or a night gown. Thankfully I was at home and not out scaring people in my pajamas! 🙂

I’ve been wearing tagaderm film over the main incision for showering. Here was what everything looked like about a week out:

So far I’d say I’m getting about 80% relief and am hoping for more since I’ve got about 2-4 more weeks to go. I’ve had the DRG stimulator adjusted twice but I still haven’t hit that sweet spot of the first one.

In the meantime, and to hopefully give you a little boost in positive thinking about this device, we just made a trip to Colorado!

Now, way back at Christmas time, Brian (my fiancée) surprised me with tickets to see Elephant Revival at Red Rocks Ampitheatre! I had never been. And when we got the date of April 24 for this surgery, we became pretty nervous that we’d have to cancel. But Dr. Sayed thought it could work if I took it easy and took breaks from riding in the car. And as you’ve already read, we made it! I was careful and we had a great time. We went to Red Rocks, Pike’s Peak, Garden of the Gods, Boulder, Manitou and Colorado Springs. Here are a few pics from our trip – enjoy!

Third time’s the charm?

I’m on the couch and pretty still this evening. The pain flare today is the worst I’ve had in weeks. That’s a good thing, though – because I’ve had several ok days lately.

But anxiety is definitely starting to get the better of me as my third stimulator will be implanted on Monday.

I recently went to a wedding with my fiancée where I chatted with a friend before leaving early. I was filling her in on what all was going in with my health (something I was actually trying to avoid and not put any focus on me), but she was asking lots of questions.

At a certain point she said something like, “You’ve been through so much! And you just keep pushing forward trying to figure it all out!”

It was one of those moments where your inner self wants to bow to the person who spoke the very true statement. The fact that every once in awhile someone will acknowledge your struggle and remind you how far you’ve come feels like a much needed drop-into-a-chair and sigh while your mind and body whisper: “thank you.”

You know what I mean.

So, I am rolling the dice yet again and willing my body to just accept this and allow the device to do its job. It’s a sort of blind faith. And I’m just telling myself it WILL work.

Because I’d really love to be able to go to Red Rocks for the first time and see Elephant Revival. (check out the songs “Over and Over” and “Grace of a Woman”)

I’d also really love to go canoeing this summer, and a hike if possible.

I’d also really love  to walk down the aisle in October without limping or dragging my leg. And to be able to swim in the ocean and see the coral reef and the cenotes on our honeymoon in Mexico.

I’d like to sleep through the night because I didn’t  wake up hurting. I’d like to work again, at a good marketing company. I’d like to go to the grocery store and be able to load the car myself. I’d like to be outside gardening more. I’d like to go on adventures with Brian again.

But more than anything, I’d like my life back, please.

So, here’s to not letting pain suffocate me anymore. Wish me luck!

The Drawing Board

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:

1. 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.
2. 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.
3. Gone to a pain management psychologist who wanted me to do a six week program, but my insurance won’t cover it.
4. Today I requested a pelvic MRI – because I’m really starting to wonder if there isn’t something else going on.
5. 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.

Take care of you.

A

The Little Spinal Stimulator that Couldn’t

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.

 

 

 

 

Post-Surgery #2

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 wish you all a pain-free 2017!