Iím not exactly sure why Iím posting now, I think I just need to feel Iím connecting with people that truly understand whatís happening. I hope you all wonít mind indulging me while I bring everyone up to speed.
In June, 2008, I was fused T-10 thru L-5 for a 60 degree thorocolumbar curve and a 49 degree thoracic curve. My recovery was fairly typical up to the 12 month point but then I started having issues. I kept telling my surgeon I thought something was wrong, but he kept telling me my x-rays looked perfect and it just takes a long time to heal. I finally stopped seeing him at 18 months. By that point, I was still on narcotic pain meds and I had developed a significant forward pitch. That was December 2009. Since then Iíve seen two excellent adult spinal deformity specialists, one is a neurologist, and they both say the same thing: major sagittal imbalance, junctional kyphosis at the top of the fusion, L-5 thru S-1 is collapsing, and several other smaller problems. I need at least 1 very extensive revision surgery, possibly two. I am on 100 mcg Fentanyl via patch, changed every 48 hours instead of the typical 72 hours, 10 mg. oxycodone 4 times daily, neurontin for nerve pain, wellbutrin and celexa for depression (who me? Depressed?) and low dose hormones so I wonít kill anyone in my house. This barely gets me through the day. Iím the executive assistant for a state senator and due to budget cuts, my jobs will end June 30, along with the health insurance I carry for my family. I have a good husband, 3 kids (a sophomore in college, a senior in high school getting ready to go to college and a 13 year old going on 20), a house I canít keep clean, 3 cats to feed and scoop litter for, and a Suburban that needs oil every time it needs gas.
Iím exhausted, all the time. I donít sleep well so I take temazepam to sleep, but if I take enough to sleep well, I canít wake up at 5:30am to get the 13 year old to school at 7:00 for early play rehearsal at school, and if I take a lesser amount so I can get up, I donít sleep much. My husband helps as much as he can, but he stays really busy with his law practice. When I break it all down, I know why Iím tired. Fighting pain all day every day is exhausting, as well as trying to stand as upright as possible.
Iím ready to have surgery. Iíd do it next week if possible. But my job dictates my schedule because February through May is our legislative session and itís not a possibility to take 3 or 4 months off. I could do it during the summer, but, as I said before, my job ends June 30 so Iím looking for a new job, and assuming Iím one of the lucky ones and actually find a job with decent benefits, I canít take off that much time from a new job. Financially, I canít afford to have surgery after my job ends then look for a job.
I donít know what to do. This is not how I pictured my life at 48 years old. Five years ago, I could run circles around my kids and everybody else. Yes I had pain, but it was manageable and I had energy. I guess one of my biggest questions is: Whatís causing me to be so incredibly tired? Is it the meds Iím taking, is it the pain and working to stand upright instead of looking like an ape, or is it the emotional toll of all of it?
So hereís a question for those of you that have had the same basic problems I have: did you regain your strength and energy after revision surgery? Please say yes, because Iím looking for any little glimmer of hope at this point. I need to know that thereís a light at the end of this tunnel and I can get to it at some point. Hope. Iím looking for hope. Anybody got any hope youíd like to share?
Thank you everyone for indulging my whining. And I apologize if I rambled It all just came tumbling out and I couldn't seem to make it stop! Iím just so tired and need something to cling to. I look forward to any responses.