I’m Having Trouble Accepting a Recent Avascular Necrosis Diagnosis

Tito Oye avatar

by Tito Oye |

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When I go to my doctors with a problem, I’m never under the impression that it’s something permanent. Rather, I’m usually optimistic that they will offer a solution. 

Recently, I have been experiencing pain in my lower back and knees. After a few X-rays and MRI scans, I learned that the pain is a result of low oxygen around my bones, which causes parts of the bone to die. The medical term for this is avascular necrosis (AVN).

AVN isn’t typical for someone of good health at my age, but for someone with sickle cell disease, it is common for the crescent-shaped blood cells to block blood vessels and prevent the flow of oxygen around the bone, which leads to its decay, and consequently, pain.

After I was told what was wrong, I was recommended a pain-management program to join. This program involves interactions with various physiotherapists and doctors, who would advise me of different things to do to make my life more manageable with the pain.

But the recommendation left me feeling disheartened. I didn’t view it as helpful, because it seemed as if the damage caused by my blood was irreversible. I wanted solutions, and I wan’t willing to accept anything else. 

Initially, I turned down the offer to join a pain-management program, because I wanted to do my own research to see if anything could be done to reverse the damage to my bones. Unfortunately, I came up short.

Surgery and electrical stimulation were suggested, but they seem too drastic for my case. I believe I’m in the early stages of the pain and the damage, but I don’t want to sit around until it worsens. I’d rather act now.

Eventually, I concluded that my doctors know best, and I’m sure they’ve seen similar cases before. So, I decided to join the pain-management program after all, but I still haven’t embraced it entirely. I guess I just want to remain optimistic.

I’m familiar with sickle cell’s effects on my body, and I’m aware of what could happen in the future. Nevertheless, I never thought this would happen to me — at least not in an irreversible way, and not so soon.

My current position is that I still don’t want to accept defeat, and I’m doing what I can to manage the pain. I’m also doing what I can to prevent the pain from worsening or spreading to other areas of my body. I’m focusing on things that will help to improve my blood circulation, I’m stretching, and I’m continuing to research other practical suggestions.

Have you experienced AVN? What were you advised to do about it? Do you have any tips for pain management or prevention? I would love to hear your thoughts in the comments below. 

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Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Comments

Sharna Donovan avatar

Sharna Donovan

Hi Tito,
My name is Sharna, a 36-year-old living in the United States with Sickle Cell Disease. I had a similar experience but it was not AVN, or maybe it was. There was no evidence-based conclusion of what was happening to me. But years ago, around age 27 or 28. I had a brain abscess that was causing severe headaches for years. (All the way back to life in my birth country of Jamaica) I was told all sorts of things until I came here. This severe headache was unbearable. I did an MRI which caused me to have emergency surgery. The initial reason for the surgery was to go in and drain the abscess but once they had done that, they realized the bone (apart of my forehead scalp bone) was darkened and cracked, so they had to remove it (A craniotomy) because that part was infected and was determined a bone infection that caused that part of the bone to die. Months later I had to go back and replace that bone with a plate. (Titanium cranioplasty)
Today that severe headache is gone and this manufactured plate is still in place with only a visual dent in my forehead (least of my worries) I'm now in school and performing well and I gave birth to my son in 2018. (I am still alive at the end of the tunnel)

Craniotomy- A brain surgery that involves the temporary removal of bone from my skull. (which for me became permanent and was replaced) by a manufactured plate.

Titanium Cranioplasty- The operative repair of a skull defect with an ergonomically manufactured plate to restore cranial function.

Hope this helps in some way.

S.Donovan

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Fatima Jiddah avatar

Fatima Jiddah

I've experienced and Currently experiencing Avascular necrosis of the left and right hip.. it's just sad it's a permanent damage with no preventive measure yet. All we've to do is take pain pills and wait till it gets very bad for surgery

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Fatima Jiddah avatar

Fatima Jiddah

I hope that you get use to it 😞

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Adebayo Samuel avatar

Adebayo Samuel

Hey Tito,
I'm Samuel Adebayo from Nigeria. I have sickle cell anemia and also was recently diagnosed of Avascular Necrosis. The AVN I was diagnosed with was at the head of the femur, it is in my left hip. Imagine dealing with the normal crisis and avascular Necrosis again. My doctors told me to also manage the pain. I have to use pain relieving drugs and also a walking stick. I was diagnosed last year and the AVN is in stage three. I have to couple up the pain with my school work and when I walk I always leap. Difficult for me to walk well. I was told I should manage the pain till it worsens so that I can do a hip replacement surgery then. If I do the surgery before it worsens I will have to still replace the hip in the next 5-10 years due to wear and tear or something. To avoid that I have to wait till it gets worse. I know I'll be fine and you will be too Tito.

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Adebayo Samuel avatar

Adebayo Samuel

Hey Tito,
I'm Samuel Adebayo from Nigeria. I have sickle cell anemia and also was recently diagnosed of Avascular Necrosis. The AVN I was diagnosed with was at the head of the femur, it is at my left hip. Imagine dealing with the normal crisis and avascular Necrosis again. My doctors told me to also manage the pain. I have to use pain relieving drugs and also a walking stick. I was diagnosed last year and the AVN is in stage three. I have to couple up the pain with my school work and when I walk I always leap. Difficult for me to walk well. I was told I should manage the pain till it worsens so that I can do a hip replacement surgery then. If I do the surgery before it worsens I will have to still replace the hip in the next 5-10 years due to wear and tear or something. To avoid that I have to wait till it gets worse. I know I'll be fine and you will be too Tito.

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You can do it avatar

You can do it

I’m 29 I have avn right hip idk why I don’t have sickle cell. But don’t lay around wasting to DO YOUR OWN RESEARCH there are plenty of treatment options besides surgery. Biophansinates, PRP/Stem cell injections, hyperbaric oxygen, physical therapy, shockwave, infrared laser, electromagnetic therapy, acupuncture. Trust me do it I have avn but I still ski and play ball. Get the pills use the stem cells try the other stuff you’ll most likely feel better maybe not effect but it helps.

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Barbara avatar

Barbara

Hi Tito,
I have sickle cell disease and was diagnosed with Avascular necrosis of my left hip last year. I limp a lot when in pain.
One doctor suggested Total hip replacement surgery and another suggested physiotherapy.
I decided to try physio to see if it helps.
I do TENS, heat therapy and physical exercises and I also take pain relievers. I am improving but I fall into relapse sometimes. Try the physio therapy they suggested. I am sure you will feel better.
All the best and stay positive. Love

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Jemima wanjala avatar

Jemima wanjala

Hi, I have sickle cell anaemia. I am a 32 years old lady from kenya. I have lived with avn since I was ten. I survived with physiotherapy till I was 21 when I had my first hip replacement. I later had my second and third replacements when I was 30 years.
The journey has not been easy. Especially dealing with the inconveniences caused by my disability and little energy. The good thing is that I can move around by myself without any walking aid although I limp alot.
However, I still can't move around for long regardless of the surgery. the only improvement was reduction of pain and improved flexibility.

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Tania Rodriguez avatar

Tania Rodriguez

I have AVN for 4yrs now, its at 6-8 joints, unfortunately, but I don't have sickle cell... It's a lack of bloodflow that kills the bones. There are several underlying causes to the lack of blood flow, some can be treated to slow and stop the progression. Some docs think joint replacements are inevitable but that is not always true, especially with it's caught early....
Please consider joining the "Avascular Necrosis Support Group" on fb... it's an educational and support group that includes experienced AVN experts which are typically hard to find considering the condition is rare. Most docs just aren't up to speed on most recent research and treatment options, even many orthos.

Just know you are not alone!!!! I wish you the best of luck.

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