How does a mother face the fact that she has unknowingly passed a chronic condition on to her child? I've been asking myself that for some time now. I have guilt because my children are my heart. I would do anything to protect my children. Yet I have no doubt that at least two of my children have spine problems just like me. It weighs on me daily. Let me share a bit about my sons.
My oldest son is 26 years old. He started complaining of back pain at a young age, approximately 7 or 8 years old. I wasn't diagnosed with Ankylosing Spondylitis at that time. I believed my spine issues were all scoliosis related. We went through years of taking him from one specialist to another. He would cry from the back pain. I remembered when I was young crying with my back pain also. It was heartbreaking. I feared he would need a back brace like I wore through my teenage years for scoliosis. However, he only had a slight curvature in his spine, not enough to need bracing. I didn't understand what was causing him to have such pain in his spine. We couldn't find any answers. Today at 26 years old he still has severe back pain. He has days where he can hardly move or straighten. I can usually tell when his back is hurting without him telling me due to the stiff way he walks and moves. It's not only visible to me his friends also have mentioned it. It's like his hips are fixed and don't move. I would love to get him in with my rheumatologist but sadly he doesn't have medical insurance. I feel for certain he has Ankylosing Spondylitis. I pray he can get insurance coverage soon and get some answers and medical care.
My youngest son is 18 years old. He too has had back pain but not as severe as his older brother. He had xrays when he was about 13 or 14 years old. He had a slight curve but nowhere near needing intervention at the time. As he hit puberty he had a huge growth spurt. He grew so tall so fast he had large stretch marks develop on his back. I freaked out when I saw the stretch marks and took him to the pediatrician. She said they had developed because his skin couldn't keep up with the rate at which he was growing. We noticed when he was about 16 years old that he was developing a very stooped appearance. I tried to remind him to stand and sit with good posture. I purchased the over the counter back braces that say it corrects stooped shoulders. Nothing was helping so I again took him to his pediatrician. She didn't seem concerned and told us he would grow out of it. Last year, I got him an appointment with a general practitioner. This doctor sent him for xrays and referred him to an orthopedic doctor. Finally I thought we would receive the help he needed. Sadly that was early 2020 and then Covid hit. The orthopedic office only would see emergency cases. My son wasn't considered an emergency so his appointment was pushed until the office reopened for regular visits. At last we got an appointment scheduled. As soon as the orthopedic doctor saw my son and his xrays he said he needed to be seen at a more advanced medical hospital than what we have locally. The doctor sent a referral through to a large teaching hospital 4 hours from our home. 2021 has been spent doing physical therapy, having more xrays, a MRI, and a CT scan. The large facility and it's staff have been wonderful. Once the spine surgeon saw my son he recommended surgery for his kyphosis. The surgeon measured my son's kyphosis curve at 93 degrees. He said it is far exceeding the recommended threshold for surgical intervention. My son's forward curve is fixed and will need pieces of his spinal bone removed so he can be straightened with rods and screws. The surgeon said this is an extremely painful surgery and isn't to be entered into lightly. We didn't decide immediately but rather took time to research and pray about it. The surgeon showed my son xrays from another patient that was almost as severe as my son. The before and after were amazing. My son said he dreams of a spine like that. That brought tears to my eyes. My son has tried to hide his back for a few years now. He's very self-conscious about his stooped appearance. He wears jackets or layers shirts to try to hide his hump. He won't go to the public pools because of his back. He is a senior in high school this year and he wouldn't attend the senior pool party. I didn't know until after he decided to have the surgery that he's faced comments and bullying at school because of his stooped shoulders.
We are waiting to hear a date for his surgery. The doctor has to get approval from my son's insurance before setting up the surgery. I hope we can get it done in time for him to heal before graduation. Please remember him in your thoughts and prayers. As a mother the thought of them removing bone from his spine and him being in extreme pain after the surgery makes me feel sick. I have to remind myself God is in control and He will carry us through.
Hugs to you dear AS warriors! Thank you for being my listening ear and shoulder to lean on.