Avascular Necrosis and bilateral hip joint replacement to avoid the pain

As I write this, I am reminded of my journey and how I got to where I am. If you read my headline, you may be wondering, how did he get there in the first place?

Just shy of five years ago, I was diagnosed with leukemia, AML to be specific. My hemoglobin has dropped to 6 rather than the 14 to 18 that everybody else has.


The day after I had the blood test showing that my hemoglobin was already down to 7 I got a phone call about 2 o'clock in the afternoon saying that I needed to go to the ER immediately. Upon arriving at the ER, I was tested with a metabolic panel, and my hemoglobin was already down to 6. This was within less than a day.


It took about four months of chemo and hospital stays along with several medication routines to arrive at the day of getting stem cells to replace my bone marrow. This all happened from August 9th, 2019 with my diagnosis until December 24th, 2019 when I received stem cells.


The pain that led up to getting tested for all of this ordeal started in February 2019. After six months of going to a rheumatologist and being tested and getting diagnosed with rheumatoid arthritis, and then polymyalgia rheumatica among other diagnoses, I was treated with a couple of different medicines for cancer and a bunch of prednisone.


Fast forward to October 2023,

I am now seeing an orthopedic surgeon, who is of the assumption, that the cancer and massive amounts of prednisone that dealt with all of the pain and inflammation, had caused a vascular necrosis of my hip joints. Other names that were given included, acetabulum and femoral heads. All in all the pain is excruciating.


I am simply unable to walk, normally because of the pain in the hip joints. This led to further issues with my vertebra, causing spondylosis stenosis, bulging discs, and bone spurs. Which then resulted in severe symptoms, similar to sciatica, reaching pain all the way down to my ankles on most days.


On December 5, 2023, I am scheduled for bilateral hip joint replacement. I am beyond excited about the possibility of a reduction in my pain levels. Most days my pain is between a 6/10 and upwards of 8/10 causing me to involuntarily convulse and or spasm from the shooting pain at any given moment. 


I am told not to expect pain relief, but that the hip joint replacements would increase my quality of life. I believe that the surgery will allow me to start healing by vertebra and sciatica symptoms.

I have done a massive amount of study about how to avoid pain, deal with pain, deal with depression, and other issues with chronic pain. Saying it's chronic pain is an understatement. There is so much, but it's indescribable. Depression comes even from being gaslit by everybody in my life for 4 years now. I believe it is incredibly difficult for people to understand the levels of pain that I am enduring. And why I get tired so quickly and have to simply lie down, sit in a chair, walk, or even get up to stretch, causes levels of pain reaching 7/10 and more. 


Here is some of the research I have found and done so far: 


A brief overview of avascular necrosis, focusing on its impact on hip joints and femoral heads.


From Nih.gov, Matthews et al. (2023), AVN, or avascular, necrosis, affects weight-bearing long bones with hip joints, being the most common location of this disease. Also called osteonecrosis is a 'degenerative bone condition' causing degradation of bone, tissue, and blood supply of the affected bones and joints (para. 1.)


A basic understanding of this health condition comes mainly from listening to doctors. Trying to fix my pain issues. Some of my frustration comes from doctors not even addressing my pain issues for over five years. At the end of this five-year ordeal, I finally had one doctor suggest that I get an MRI of my lower spine.


My hip joints had become elliptical, rocky, and pitted. This is the best way I can describe it and is in my own words simply depressing as I couldn't join in all the activities that I used to do. 


This resulted in the revelation that I had spondylosis, stenosis, and bulging discs with bone spurs, causing some of my pain and issues. But the root cause of my vertebrae issues from L2 through L5, and S1 and ultimately that I was not walking correctly and stemming from the necrosis of my hip joints. They became elliptical.


From Nih.gov, Matthews et al. (2023), more information corroborating my thoughts and experiences, lists "Direct cellular toxicity" as being caused by chemotherapy among other causes. The list is long with many bulleted items comprising the lists on Nih.gov (para. 6.)


I also believe that my pain profile, if we can call it that, includes tightness and pain in my IT bands, glute Medius and Maximus, piriformis, psoas, iliopsoas, knee pain, anterior tibialis, and all four parts of quadriceps being bilateral in all areas mentioned just now. 


The pain keeps me from spending anything more than 10 minutes out of bed. With sustained time out of bed, causing increases in the level of pain, eventually causing me to use the pain medication, and or simply lay down and try to sleep. And unfortunately, I can't sleep when the pain is throbbing and shooting sharply.


I have been subscribed to Gabapentin and I am up to 900 mg each day which does just let me sleep. A muscle relaxer like Tizanidine also lets me sleep, so I'm not completely dependent on painkillers. I do have on hand some opiods which I try to use very sparingly. Ibuprofen, Tylenol, aspirin, and other painkillers aren't very effective at reducing my pain enough to function. 


Another symptom that I frequently encounter is what I call "getting stupid" After the pain gets to a certain level, I simply cannot think straight, and I start losing words and train of thought.


I am beyond excited about my upcoming surgery. And I've been told it's quite odd that anyone is excited about a double hip joint replacement. But here I go wish me luck.


References


Matthews, A. H., Davis, D. D., Fish, M. J., & Stitson, D. (2023). Avascular Necrosis - StatPearls - NCBI Bookshelf. Retrieved November 20, 2023 from https://www.ncbi.nlm.nih.gov/books/NBK537007/




 

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