Oh HAI friends! My name is Carol and I’m excited that you found my
Why are you in a wheelchair?
I often have people ask me why I’m in a wheelchair, how long I’ve been in a wheelchair, and what happened to cause me to be in a wheelchair. If I’m in a particularly goofy mood, I might come up with something creative and possibly outlandish, haha! I have a pretty creative imagination ;-). Instead, I usually give a very brief explanation saying that there were some complications with a surgery that led to chronic pain and
I am one of >those< people that have a unique medical history, you know when they say 1 in 9,999,999.99? – that’s me. I’ve had 2 articles in medical journals written about my >unique< physiology. Kinda one of those “oh, yippee!” claim to fame things, ya know? Unfortunately, that uniqueness is also the reason I have had over 35 surgeries in my life (most of them from age 19-41). My surgeries have ranged from minor outpatient -no time in the hospital- to over 5 hours in the OR and spending a couple of months in the hospital/acute rehab. It would be boring and tedious to talk about them all so I will mostly be talking about my last few surgeries as they pertain to my current chronic conditions.
It all began…
I have been in chronic pain along with some other conditions for just over 5 years now. It all began with pain and discomfort on and around my tailbone in 2013. Once the pain interfered with my daily life, I knew I needed to have things looked into more. After several tests, imaging, and more doctor visits than I can remember, I was scheduled to have my tailbone and an unknown mass next to my tailbone removed. Read more about the coccygectomy surgery and recovery here. I was in physical therapy for almost a full year. Once I finally was able to walk short distances without the use of any mobility aids, we celebrated! About a week n a half later, on the morning of November 30, 2015, I woke up in excruciating pain and couldn’t move without making the pain worse. I ended up in the hospital for 4 days before they sent me home and said to consult with my doctor. I left the hospital in a wheelchair and have been a wheelchair user ever since.
Sacroiliac Joint Fusion
Why in a wheelchair? I could not walk, and putting any weight on my left leg sent intense pain from my upper thigh, through the left side of my butt and hip, up to my lower back. Any movement of my left leg would give me pain. My physical therapist told me that trying PT was not a good idea until we knew the cause of the pain and limited movement. So, we did the gambit of tests and
I recovered fairly well from the actual surgery but I still needed to use my wheelchair. In fact, even 4 months post surgery, I was still experiencing intense pain in my SI joint and the muscles around it. There were some movements that gave me even worse pain than what I experienced pre-surgery. My surgeon suggested that I go see a
The Mayo Clinic
My first visit to The Mayo Clinic was in February 2017, about a week after my 1-year mark from the SI joint fusion surgery. Several tests were done including imaging of my spine and lower lumbar region, as well as numerous other tests, scans, pokes, and prods. The neurosurgeon that I saw confirmed 2 things:
- I should never have been a candidate for the SI joint fusion surgery due to my advanced osteoporosis (even though we asked three different docs about that before the first SI surgery).
- The SI joint fusion surgery failed, and there was no indication of new bone growth to secure the rods in place. This means that certain movements would cause the rods to move and cause extra pain in my SI joint. Moreover, the joint had not fused and thus any benefit I should have received from the fusion did not occur.
Even though we already suspected that the surgery had failed, it was still a pretty big blow to have that confirmation. Especially when we found out that there is not a way to remove the rods from the fusion, I really only had 2 choices to make. My first choice was to leave everything as is and try to learn how to live with the pain and limitations. My second choice was to have another surgery, called an SI Joint fusion revision. He would cut through the titanium rods, add more hardware and some special bone ‘paste’ (bone morphogenetic compound) to support a new fusion. We took some time to really think about it, we knew that the revision surgery would be very extensive and that the success rate for me to be out of pain and walking was very low. The surgeon was reluctant to even do the surgery because he could not promise improvement, even if the surgery went well. At the minimum, my surgeon did say that I would not be worse off than I was currently. Those are tough words to hear, tough words to accept. After numerous trips back and forth to Arizona, I think it was sometime in September of 2017 that we decided to take the chance and go forth with the SI joint revision surgery. I mean, at that point, any chance for things to improve was better than not trying and live with pain that was constantly getting worse, right? The surgery date was set for February 9, 2018. Since the SI joint fusion revision and the recovery is pretty extensive, you can read about it here.
It’s March 29, 2019, just over a year from when I had the SI joint fusion revision surgery. I am still a wheelchair user, but I can also walk short distances using my walker. I’m able to get to the bathroom and use a REAL toilet! haha! That may not seem like a big deal to you, but for over 2 years, I had to use a bedside commode. I’m still in chronic pain, but my daily ‘pain scale’ (you know the pain level from 1 – 10), is now an average of a 7 instead of an average of a 9. That is quite a difference when pain regulates what I’m able to get done at any particular time. I do have a new chronic illness, CRPS (Complex Regional Pain Syndrome), but we are learning more about it and what to do during a flare-up. In fact, there are a LOT of things that I am able to do now that I wasn’t able to do pre-surgery. I will share more of that in this series along with my continued journey of recovery.
My Chronic & Complex Journey
I have started to write about this several times over the past year. I finally made the commitment to get this series started and posted. Beyond the support of my fantastic soulmate and loving family, I have an amazing support system from my friends that >live in my computer< haha. I’ve asked everyone to hold me accountable and help encourage me to get this series done. A special “Thank You” to my #SuiteTribe from The Socialite Suite and to all of my fellow #Spoonies! This is just the first of many more to come so make sure to follow me.