Hi! Hope everything goes amazing for all of you. Today I will talk about my spine journey. By this time, I’ve reached the 10th month of post scoliosis surgery. Finally, I can say that my spine is getting stronger. I feel like the titanium has already blent with my bones and merged with my body. The pain has 100% gone. I start to wear hand bag and able to lift heavier loads. Even Dr. Luthfi said that my spine will stay in status quo (21 degrees) if the titanium is removed from my body. Now, I realize that the feeling of having a straight back is worth every physical and mental struggles.
Continuing my latest post vis a vis the efforts to eliminate soreness in my right leg post spinal fusion, here I’ll explain the cause of my lengthy illness and the treatment to cure it. For you my scoliosis friends, I think you might consider to keep in mind the symptoms that I have, in case you feel the same thing pre or post surgery. This ailment that I am currently suffering is considered rare. Even my doctor who has countless histories in this field said he barely experienced this case with me. I trust him.
A year ago, I booked the operating theater right after our first session. After ten years of search for a good spine surgeon, I hadn’t imagine that I took a big decision because of a doctor I barely knew for 30 minutes. I mean, I’ve heard good reviews about him but I’d never think I made up my mind so soon after I met him in person. He was so calm. I thought I need someone like that to handle me, because I tend to terrorize and shower people with critical questions in panic attack (don’t blame me I’m an INTJ). I think he is one of the best and a true altruist by heart. I am grateful that I’ve chosen him because he is such a great discussion partner, who gives sound solutions and goes extra miles.
So, after the screw removal surgery and two weeks of intense physiotherapy went futile, the pain in my right foot still lingered. At the early period of post spinal fusion, the pain only appeared when I walked, sat or bent for a long time. The pain only appeared from below L5 to the knee. It mimicked the pain caused by problems in L3 screw, but it is not. Now, the pain comes up anytime in any activities, from L5 to the calf. It even emerges as soon as I open my eyes while I am still laying on my bed, in most mornings. Therefore, I conducted the pelvis Magnetic Resonance Imaging (MRI) to find out the cause of that severe pain. Undeniably, I was shocked at the very second that projector in my doctor’s room showed the result. I thought everyone were shocked, not just me. It was something that clouded all over the upper thigh and the groin, radiated all the way to the lower back and to the lumbar. Not only we found that thing, we also found that I have an approximately 4.7 cm ovarian cyst, located left from my uterus.
The ovarian cyst must has nothing to do with the pain. The fact that it is located in the left side and not adjacent with the upper thigh. That day, Dr. Luthfi requested me to come back a day after because he had to discuss further with the team and radiology dept. I was also prescribed a new medication because NSAIDs and corticosteroid drugs that I’ve been consuming could not do their function in suppressing pain anymore. This new drug belongs to opioid analgesics (narcotic pain reliever), the one to treat severe chronic pain, which has not responded to any other treatment. It decreases pain by acting on the central nervous system. Taking this medication has made me experienced slow heartbeat, nausea, vomiting, drowsiness, lack of energy and dizziness, but this is the only medicine that works on my pain.
After the meeting, I paid a visit to the obgyn to check my cyst via ultrasonography. So far, it doesn’t have to be removed. If you want me to tell more about it, please kindly ask 🙂
The day after, I met Dr. Luthfi and the radiology team. They said that the source might be sacroiliac (SI) joint pain, which is caused by injury or damage to the joint between the sacrum and iliac bones. This joint plays a major role when walking and lifting. That’s why the pain followed those activities. The pain starts from lower back after L5 to the buttock. It is rare that SI joint pain occur to post spinal fusion patient <25 years old, who is not married and never give birth to a child. I was 23 years old when I was operated. The SI joint pain is more common to older patients, especially who has experienced pregnancy, childbirth or accident. Maybe this ailment happened to me because of injury in the past that I didn’t notice or spine surgery (lumbar fusion) itself.
Dr. Luthfi said that there is also abnormality on the shape of the sacrum because of the scoliosis. The spinal fusion I underwent in the past only focused on thoracic to lumbar, not the area below L5. Actually, the abnormality of the sacrum and hip area cannot be fixed by surgery, so all we can do is to eliminate the pain.
First thing first, a diagnostic SI joint injection was performed to confirm the cause of the pain. The injection was conducted in radiology department using CT scan. The SI joint was injected by local anesthetic first, then steroid medication. While the syringe was inserted to the SI joint, my lower body was CT scanned to ensure the accurate placement of the injection, as illustrated below.
The pain level was evaluated in an hour post injection, because it should be gone by then. I was asked to walk around the hospital area for an hour and came back to see Dr. Luthfi in operating theater. The pain level was decreased for 75% that hour. So, we were pretty confident that the SI joint might be the pain source. I was also explained that the pain should come back in 2-3 days and vanished afterwards. The diagnostic injection should be able to suppress the pain for 1-2 months.
If the pain starts to reappear, the joint injection to insert steroid medication should be repeated. However, the result tends to be temporary and could be repeated according to patients’ condition. If joint injections don’t result in pain relief, nerve ablation could be the next treatment. Nerve ablation, sometimes called ‘blocks’, is destroying the nerve fibers carrying pain signals in the joint. If nerve ablation fail to succeed, then surgical treatment is the last step. The SI joint fusion surgery means placing titanium between the sacrum and iliac in order to stabilize the joint.
On H+1 post injection, I felt a substantial amount of relief in my right foot. Unfortunately, the pain reappeared on H+2 post injection until the next seven days. I immediately contacted Dr.Luthfi and I was requested to perform the joint injection again 3 weeks after the diagnostic injection. The initial dose of oxycodone didn’t work on me anymore. I also upgraded it because of the chronic pain that frequently appeared. Another thing I’m grateful for by being under Dr. Luthfi’s care is he pays a really good attention to his patients, in example by giving a prompt response whenever I contacted him, even on weekend.
The struggle of consuming oxycodone was real. It was hard for me to concentrate during the day. I woke up feeling hungover every morning, when I had to balance the preparation of my further education, the NGO that I joined, the new small business as well as the job seeking, to run errands and to drive. I even fell asleep when I did the mock exam in classroom. I didn’t mind to force myself that way rather than limited by ailment to do activities.
Three weeks after the diagnostic injection, I conducted the SI joint injection again without CT scan in operating theater. Is it painful? Yes it is, even after a local anesthetic. The observation of post injection was the same as the first one. The difference was I worried this time because the pain level only decreased for about 25% during the first 15 minutes and increased in the next 15 minutes – 2 hours.
I reported back to Dr. Luthfi after 2 hours. Once again, he examined me with several movements and pressures at some points near the SI joint and right foot. After our long discussion, his conclusion was beside the SI joint pain, I still have a weak muscle caused by scoliosis that I’ve suffered from a long time. To reinvigorate the muscle, several exercises like yoga, pilates, swimming and core muscle strengthening program are needed. I was taught several stretching movements by him before I am ready for a heavier exercise. He recommended me to swim in an indoor swimming pool. Thus, my skin won’t be burned or get tanned so I don’t have to put extra effort in skincare regime. It is recommended to do yoga and pilates with an instructor who knows how to treat post scoliosis surgery clients. For the strengthening program, he also recommended a personal trainer and offered to talk to the trainer regarding my condition and the exercise target.
How about the SI joint pain? I have another two chances for injection. If it doesn’t work out, I should undergo the radio frequency ablation procedure. However, as the result tends to be temporary, the worst scenario is I should undergo the surgery, but Dr. Luthfi said we should avoid surgery. Why? I have not married and pregnant yet. Placing the titanium in SI joint will affect my first pregnancy. The hip area will stretch as the baby grows inside the belly and the titanium that placed in SI joint will prevent that expansion. As a result, the mother also could not push the baby out. So, I can undergo on SI joint surgery only after my first pregnancy, if I expect a normal delivery. Getting pregnant with SI issue will worsen the pain, because the inflammation is still there but the body weight increase. I was also afraid that something wrong will happen if I agree for fusion. I am a person who always mitigate the risk in planning my future. I take into account worst scenario. What if the non surgical efforts won’t do anything for me? Could I bear the pain until I have my first child? It is too intangible and uncertain for me. Thinking about it that day was my worst heartbreak. I went emotional. Again, we should feed our mind with positive thought in fighting an ailment.
If I were asked whether I am tired of sickness for total 11 years, I would say yes indeed. But I choose not to give up on a disease, just like Dr. Luthfi says every time I meet him. I really should not and whatever you, who read this, endure now, you should not too. Keep the tenacity and persistence in mind. I believe this test from God leads to a happy ending 🙂
I hope this is useful for all of us. Thank you for reading!