Debilitating Lower Back Pain Radiating Upwards From Coccyx

This story is not about me. It's about my daughter. Brandi is now 28 years old. Her whole life, she has had back pain. During adolescence, her back curved which left her with severe lordosis. Because of that, her pelvis tilted, which wore out her hips. Her MRI also shows that her tailbone has been broken, which must have been when she was very young. Brandi didn’t walk until she was 18 months old. 

Throughout her life, Brandi has been to many, many specialists. When she was 22, she was referred to a spine surgeon who is the one who found that her hips were worn out. Her surgeon gave her cortisone injections starting near the top of her spine. It didn’t help her pain at all. More cortisone injections were given in her spine in different places and in her hips. The injections did not work at all. 

Brandi had always told her surgeon that the pain starts in her tailbone and radiates up to the “shelf” in her back, which is from her lordosis. He did not believe her tailbone was the problem because it doesn’t really hurt to sit. It may have hurt to sit years ago and does hurt occasionally to sit, but the pain radiates up her back.  Finally he said, “What have we got to lose?” She had a cortisone injection in her tailbone and it was a miracle! Brandi had an injection every 3-4 months for two years and those have been the only normal years of her life. 

Eventually cortisone quit working and in fact, it made her pain worse. Her surgeon said that he would remove her tailbone, but first she needed her hips replaced because he still thought that the hips were the cause of her back pain. Brandi had two total hip replacements. After her hips were replaced her surgeon changed his story and said he would not remove her tailbone because he still doesn’t think that is her problem. I could be wrong, but since two years of cortisone in her tailbone changed her life completely, I believe her tailbone is the problem. 

A few years later, he again ordered cortisone injections in her tailbone, but they did not help. Again, a year or two later, cortisone does not help. Obviously cortisone is no use to her. Her surgeon basically told her to suck it up and live with it. 

Brandi can stand for a very short time and walk for a very short time. Pain rules her life. She lives on her own, but cannot stand long enough to cook a meal. Doing laundry is a huge task. She needs a wheelchair to get anywhere and uses a walker if I’m at work or unavailable to push her. She shops for groceries in stores that have motorized carts. Brandi cannot do everyday tasks without help from me or her dad.  She has never been able to do what others her age can. Brandi very frequently comes to stay with me overnight because she is sad and depressed. 

I was looking online and saw where they do coccygeal nerve ablation in the US. I have contacted many diagnostic imaging places in Alberta and nobody does the procedure. One pain clinic does nerve ablation for the spine, but not the tailbone. I emailed her surgeon and asked about the procedure. He asked where I got the idea from and I said, “From the internet. I am desperate to help Brandi.” Brandi saw him again and he said, “How would we know which nerves?” He again ordered cortisone and again it did not work. Percocet and other pain meds do nothing for her, except cause constipation. She has recently started taking cannabis, strictly CBD, so she can get on with her day without being stoned. If she takes an extreme amount, her pain is gone for about an hour and a half. She is taking cannabis legally and of course the two places she is allowed to buy from have crazy high prices. It is not reasonable to charge those prices to someone who cannot work and who the Alberta government denies AISH (Assured Income for the Severely Handicapped) to, which also is crazy. 

I have contacted everyone I can, including the CEO of Alberta Health Services and Medical Affairs and I was told it is up to her family doctor to find someone who does the coccygeal nerve ablation/rhizotomy. I don’t know how she can find that out if I spend hours and hours and I cannot find anyone. She did say that since cortisone no longer works, she believes ablation will not work either. That would mean that having had cortisone injections took away her chance at other types of relief. Can you please help us? Brandi needs a chance at life without pain. Thank you so much for taking the time to read my story. - Josie




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