2019 trials and tribulation · Sickle Cell Disease · Survivors · Warriors

Avascular Necrosis (AVN)/Osteonecrosis

https://www.stjude.org/treatment/patient-resources/caregiver-resources/patient-family-education-sheets/hematology/avascular-necrosis-and-sickle-cell-disease.html

What causes avascular necrosis (AVN) in a person with sickle cell disease? … Avascular necrosis(ay VAS kyoo ler neh KROW sis) results from the temporary or permanent loss of blood supply to the bone in the hip or shoulder joint. This loss of blood causes narrowing of the joint and collapse of the bone.

As much as I thought I knew about my disease (sickle cell) this I never knew could happen and no doctor ever mentioned the possibility of this. The sad thing is that I learned it the hard way. In Summer of 2016 I awoke with what felt like “I slept bad and I needed to crack my neck”. After a few weeks of this uncomfortable pain and not really knowing how to describe it, I finally went to see a doctor which at that time was a Rheumatologist for a wrongful diagnosis of having Lupus. She basically summed up my visit as either she gives a steroid shot of physical therapy. This did not sit well with me so I declined.

A few more months went by and the pain was getting worse, I then decided to go to my PCP and just ask for an X-ray. Immediately the results came back as being noted but not clear a CT Scan was needed. Still they could not tell what the scans were showing in the mean time the pain was increasing rapidly. I was sent to a cancer hospital where after months of traveling an hour each way was ruled out not a tumor or cancer. Finally, I was sent to an orthopedic doctor who again after the first visit told me he don’t specialize in shoulders and I needed to find someone who did. Then he casually mentioned it may be Avascular Necrosis. Well, well, parentally my small neck of the woods made this task impossible. More long drives an hour each way, but I finally got a wonderful Orthopedic Doctor who told me I was at stage 3 heading to stage 4 and surgery had to be done. took me a year to just get a diagnoses. My right arm was so weak that holding a cup of water was too painful, writing was unbearable. I had Surgery November 17, 2017.

The process and surgery it’s self was a breeze but anyone who knows anything about sickle cell knows how much oxygen the blood requires and possibility of blood transfusion. Need less to say, 12 hours after leaving the hospital I developed a fever, I am very stubborn so I waited 3 days to finally give up an go to the ER when I was immediately admitted with hospital acquired pneumonia. (go figure) My blood count was too low for the antibiotics so I needed a blood transfusion. Sad to say, I spent Thanksgiving in a hospital room.

I recently relocated to TX last summer and guess what??? … I currently have AVN in my left shoulder and also my left hip. Surgery is scheduled on my left should for June 26. I cannot do both joints in one surgery – bummer for me because I have to continue another 6 months to a year in pain. So far I have been in constant pain 24/7 for 3 years. Even though I hurt, see I smile.

Honestly, I was not prepared in 2017 neither did I do my homework because I thought it was not a big deal. But let’s say I am prepared and I will take anyone having shoulder replacement through some do’s and don’t.

Out of Surgery 11/17/17
First Night after surgery
a few weeks after surgery
My birthday – One month after surgery.
Christmas after surgery 12/25/17

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