I finally met with the surgeon (briefly - he popped in) and his nurse practitioner and discussed my newest MRI results. Life likes to keep things interesting by always changing its plans for me. I found out that the surgery I thought I was going to have has to wait. Now we are starting with a different fusion/decompression surgery to correct my now very severe lumbar stenosis. It has now been bumped up to top priority because of the possibility of cauda equina syndrome which can led to me being paralyzed or even worse losing control of my bowels or bladder. Even though I've been pushing to get surgery, now that it is actually going to happen I am having doubts.
I have several issues all causing problems with my core skeletal system including degenerative disc disease, osteoarthritis, osteomalacia, bone spurs, several herniated discs and annulus tears. The stenosis in my upper and lower back is causing my spinal cord and nerves to be crushed in my now too narrow spinal canal. This is causing sciatica, neuropathy, nerve damage issues, muscle spasms & weakness and severe pain. Three of my lumbar discs have popped out from between the vertebrae into the canal like little squashed grapes. My facet joints have enlarged and my ligaments have stiffened causing my spinal column to also narrow from the posterior side. My lumbar spine has flattened out & shifted - spondylolisthesis while the top of my spine has developed kyphosis - an extra curve. I also have bilateral sacroiliac joint dysfunction and sacroiliitis. My hips both have trochanteric bursitis. My left leg is shorter than the other and I have a left lateral pelvic tilt which causes my spine alignment to be way off. I have lived with chronic pain for so long now if I woke up tomorrow pain free, I would think I was dead.
Doctors always tell me that my back shouldn't be like this. I'm too young for these back issues. They like to remark how I have the spine of a 60 or 70 year old. They always act like it's my fault like I did something wrong. They make comments like, "Are you sure you weren't in an accident?" Um, yeah a massive one that just sort a slipped my mind. Some of my doctors believe all my problems are caused by autoimmune issues but others seem to think that they couldn't be the reason and the problems are unrelated. I feel like I have traded bodies with an 80 year old. It took me years to get any doctor to even really pay attention to me when I said my back hurt. They always would dismiss me and tell my to exercise, lose weight, ice, heat, and to take non-steroidal anti-inflammatory medication. The most they would do was send my to physical therapy. I had to fight to be heard.
When I finally had an MRI and proof of my spinal issues (You can probably imagine my "I told you so" face.) they still dragged their feet in treating it. I get being conservative (I took that approach for many many years.) but when you can't stand more than a few minutes or walk more than a few steps it's time to take action. I am not the kind of person who goes to the doctor unless something is majorly wrong. I asked one doctor if this was happening to you, what would you be doing to fix it? Would you want a doctor to ignore your pain? They treated me like a junky looking to score pills. I have never, not even once ever asked for pain medication. I don't want to mask the pain, I want to fix it. Also, as someone who has had chronic migraines since they were in 1st grade, I know better than to take pain meds unless you have to because you build up a tolerance and then nothing works for you anymore.
I've tried the cortisone injections. The numbing agent took away the pain for the first day but then it would wear off quickly and my pain would come back gradually and would return completely within a month. The only reason I kept doing them was because they would take the edge off so I could just exist for awhile without always being at a 9 or 10 pain level. Also, I had no choice because it's an insurance requirement to get surgery approval. The last one I had was in February. At first, I thought it wasn't going to work at all but after a few weeks it reduced my pain to where I was on average probably a 6.5 for about two months. That really made all the difference in me being able to start exercising more.
The pain has definitely been coming back over the last 2 months with a vengeance but I am a stronger person now not only physically but mentally and I am fighting back. I know that it won't get better on it's own but will only get worse so even though I fear having the surgery, I don't believe there is any alternative. I'm all out of options. I worry about it daily. I have 6 minor children at home and a husband who can't do it all alone so something happening to me is always a fear. I think my biggest worry is that it won't help or that it will even make things worse. Worrying never fixes anything, so I have been working extra hard to focus my energy on making sure that I am physically in the best shape to handle the surgery & recovery.
I had originally thought they would slice me open & just fix everything at once because that seems the most efficient & logical option to me. Just give my spine a good top to bottom overhaul. I found out that instead, they plan to do 4 separate surgeries with at least 6 months to a year between each procedure for recovery. I feel like crying at the thought of exactly what that means. Now I'm looking at years of surgeries and recoveries. Which means more pain, more of a financial burden, more of a chance to regain weight & lose more muscle, more stress, more hassle, and more time spent on the sidelines watching life pass me by. I don't want my little guys's whole childhood to be Mama being unable to do anything.
Every surgery is a new risk of having complications. It also increases my chances for infections. After every surgery that I've ever had, I've developed infections internally. I have had to be rehospitalized so that they can reopen me and drain the infection more than once. Having had sepsis and almost dying from an infection in the past I know how serious they can be. It also increases my risk of blood clots which I'm already a risk factor for because of my autoimmune problems.
I am so close to my weight end goal that I can see the finish line and I so want to cross it but I now have an official deadline on losing weight and strengthening my muscles. My surgery is scheduled for August 15th. Just the prep work alone that I need to do in order to prepare our home, my family and myself for my being out of commission for months is a huge undertaking on top of my already never ending to do list. Having to do it multiple times in the future is too much to even wrap my head around right now. I am trying not to stress myself out with everything.
Normally if the surgery is successful, the patient would be able to get up and walk shortly after they wake up and feel significant leg pain relief almost immediately. However, since they are only fixing part of my problem I will probably actually go through all this just to feel exactly the same. Then I will have to wait to do the next surgery for any possible results. Even though I know technically my spine will be better, it will be so disappointing to not be able to feel any results. What is the point if I'm not going to notice a difference. I guess it will be like a non scale victory. This journey will be a lot like the weight loss process. The process will be long and full of challenges. At times I know I will want to give up, but each small goal & step will add up and get me closer to my end goal. I just need to remember that eventually it will all pay off down the road with a happier, healthier & stronger version of myself.
I know it will be ok. I know it will all work out. I know I will conquer this.
But right now... well right now it just feels overwhelming.
Right now, I'm freaking out a little because now it has become real.