All the surgeries- why?!

The most recent health adventures, which for those of you who haven't known me very long probably seem like the first of my health problems, have really been just the latest of so many. These are the surgeries. The seemingly endless surgeries, procedures, granny visit, me retreating to my bed for weeks on end, walkers, wheelchairs and canes.

So, why the surgeries? How did we get here?

I have an incurable degenerative autoimmune disease called Ankylosing Spondylitis. No, we don't say that whole mouthful very often so here it is known as AS. Though teaching the kids to say it was very cute and fun....
All of those fancy descriptions simply mean that my immune system has decided to attack me, mainly my spine right now, and basically just eat away and destroy my joints. It has no cure and degenerative means it will only get worse.
However, it is not fatal and we are doing everything we can to slow the progression of disease down and to treat the side effects and damage. That said, in the interest of honesty and transparency, since that's why I'm doing this, some of the side effects and treatments are quite risky, so we have come to a place of choosing quality over quantity.

One of the main and riskiest treatments for autoimmune diseases are immunosuppressants and this is the treatment we have landed on. I go to the chemo center at Kaiser every 6 weeks for about 3-4 hrs to get IV Infusions of immunosuppressants (I sit in a chair with an IV in my arm for about 3 -4 hrs while the medication flows into me slowly and through a filter. Being forced to sit still with nothing else to do is not a bad break from the kids in all honesty lol). This medicine's job, as you can infer, is to destroy my immune system- all of it, the good and the bad. This causes me to be immunocompromised like a cancer or HIV patient, or a baby before immunizations (becoming more clear why I'm so vehement about vaccinations?). And yes, this is as risky as it sounds, but as I said quality over quantity. Risk vs reward. Etc etc.

Shortly after starting this treatment we noticed a positive difference in energy and pain level, however the two pesky joints at the base of my spine, the Sacroiliac joints, where the disease started, were just too damaged already for this essentially preventative medication to have any effect on them. This was still preventing me from standing, walking, sitting for long length of times, and was generally causing intense pain and immobility as it has for 7 yrs now. This was complicated by an additional diagnosis of sacroiliac joint dysfunction, meaning those joints aren't physically functioning the way they were made to. You could say they were "dislocated". That's not medically accurate, but it's still a valid explanation.
The immunosuppressants won't help damage already done, so our only option to fix these unstable and severely inflamed, damaged and dying joints was surgery to get rid of them.



The surgery required to repair these damaged joints involved [WARNING if you're squeamish] drilling through my hip and butt muscles and through the pelvic bone, scraping out all of the tissue in the joint (SI joints connect the pelvis and spine) itself, placing a cadaver bone in the joint along with a bone growth compound and then screwing two large titanium bolts through the pelvic bone into the spine on the other side in order to hold the joint together until the bone graft grows and both sides of the joint fuse together on their own. The idea is to just get rid of the damaged and dying joint all together making one solid piece of bone.

The aftermath of the drill

Not to scale, the bolts are much bigger than they look

If you're especially curious there are several methods for this surgery- we used the zyga method as it's the most thorough, even though the recovery tends to be a bit harder.

Waiting for my cement!

As some of you may recall, between the surgeries I had cement inserted into my spine, called vertebroplasty. To put it simply, my surgeon discovered after the first surgery on my left SI joint that my bones were very brittle and he was nervous about the bolts holding in the  bone without essentially crumbling them. Before he would do the second (right) side he required me to have a procedure where they inserted cement into my base spinal bone (sacrum) to make it stronger for when the second set of bolts (this time on the right side) went in. During this process I received another diagnosis of severe osteopenia, the cause of the brittle bones and a small step away from osteoporosis. At 40 yrs old....

The cement went in through a metal tube through that little hole....

So that's the reasoning behind the surgeries in my case, but as you can see it's just one piece of the huge mess of a puzzle that is my health.

Please post any questions in the comments! I'm an open book at this point;)

Recovery was brutal, I spent a lot of time doing this.....

**It's important to note that AS varies widely in severity and symptoms. Some people experience mild pain and inconvenience, whereas some experience destruction of joints, severe pain, eventual fusion of the spine and heart and eye issues. Unfortunately, I fall on the latter end of the spectrum in the severity. No one knows why some are better/worse than others. Just luck of the draw. It's most likely complicated by the myofascial pain syndrome, osteopenia and Fibromyalgia, but it's not medically absolute. As nothing is.