My battle with an extremely rare disease
Ok fellow AVNers, here it is..... MY story. I must warn you though, this is going to be really long, and probably almost qualify as a small novel, but I feel as though it should be done. I have read others posts and I really believe that introducing yourself and giving a background on your situation helps with clarity in understanding this disease. It also helps in our support. So without further ado, here goes (you should probably grab a drink, and sit down for this one)........I fell on the ice at work in January 2014. I used my left wrist to break my fall. About 4 weeks later, I noticed the pain was getting worse and was UNBEARABLE, so I went to the Emergency Room. X-rays showed that I fractured the Scaphoid bone when I fell and there was no healing in the bone at 4 weeks later. Who ever knew that a human bone the size of a quarter, had the power to tell your circulatory system to go pound sand? Further testing found AVN in my wrist. That was the first time I ever heard of this disease, which isn’t surprising considering a minor league baseball stadium holds more people in one game, then are diagnosed with Avascular Necrosis in an ENTIRE year! What I actually found even MORE surprising was how hard it was to find Dr’s who knew anything about the disease (I am a pro now!) I was told and through my own research which probably cost me about $1000 in k-cups,(we DO have lots of time to read don’t we?), that so far only a few things are known causes of AVN. I realized one of the “listed” causes applied to me, monthly Prednisone shots for poison ivy as a child. Thanks Mom lol. I know you meant well, and you thought they helped with the itching, but THIS is much worse. Sorry, back to my story....Partial wrist fusion followed (it failed!) and then a full fusion months later, followed by a third surgery to remove a screw from the first partial fusion that was causing nerve pain. I FINALLY returned to work in November 2015, 21 months later.......all is well and I am back to a normal life! Um, for about THREE months. In my right hip I began noticing a dull ache/groin pain around September 2015, while recovering from my wrist surgery. I just thought it was muscle related because I was out of work ( I am a police officer ) and I wasn’t as active for 2 years. That “dull ache started to feel sharper and sharper. I was actually starting to think what a horrible thing it was going to be to ask my wife to help out in the bathroom if you know what I mean? But she is a great wife of over 20 years and would do MOST anything for me. I mean I DO kill spiders and I can get things off the top shelf for her, so that helps. Soon, my 44 year-old-going-on-97-year-old hip couldn’t get out of it’s own way or the car for that matter, without excruciating pain. So another Dr. appointment and follow up MRI revealed AVN in my right hip. At the time they said it was Stage 3. Back out of work! I am so glad I asked for the entire Sons of Anarchy dvd set for Christmas!
Fast forward one month and I saw an orthopedic surgeon who recommended core decompression with Stem cell replacement. Hoping to save my hip and get back to work ASAP, I went ahead with it. It failed miserably. In fact, my hip completely collapsed after the Stem Cell injections. Now I didn’t even have a 97 year-old hip. I received my total hip replacement in August 2016. At a follow up visit it was revealed to me that the prior imaging also detected AVN (Stage 1) in my left hip. Knock on wood, that hip doesn’t bother me too much, yet...
Once again, back to work in December 2016. All is well again! I am beginning to enjoy life again. I am going fishing with my son, playing in a dart league, mowing grass (that part isn’t really all that fun, but I can add it to my resume with the whole bug killing thing)......etc.....
6 months later (August 2017) I begin to notice that the simple things I do and ALL the fun things I mentioned previously are beginning to cause pain in my right shoulder. I started thinking, “No! Not again! This really can’t be happening to me”. Soon my left shoulder also decides to join the game. By September I can’t lift most things or move my arm around (think of the commercial, “I lift things up and put them down”, except I can’t lol). I decide that it’s time to pick up the phone again (I FIRST called for a pizza delivery, no joke) and then I called my Dr, who I am beginning to get to know really well at this point. I was scheduled for x-rays and an MRI of both shoulders in October. The testing on my right shoulder revealed “extensive Grade 4” AVN with “multiple rotator cuff tears” and “large cysts with complete cartilage loss”. The left shoulder is classified as late stage 1 or early stage 2, with “multiple lesions” and small rotator cuff tears”. The Orthopedic Dr’s recommended a complete right shoulder replacement because it was end stage 4 and the head of my humerous was flat, which surprisingly does not work well with a round joint lol. So I decided to work as long as possible and delay the surgery ( I have all the standard bills, including that always annoying mortgage thing). It has been a year and the pain is completely unbearable, sometimes even at rest. I wake up at night from extreme pain, even though I have some good pain relievers. I drop everything, I can’t lift anything. Think about that, I drop something and then I can’t pick it up either lol. I have broken three coffee mugs, including my favorite mug that my sister got me for Christmas 4 years ago! I get pain in my right elbow that can sometimes feel worse than my useless shoulder. Dart league isn’t an option this year either. I did go fishing twice though. I made an appointment with the Dr. last week and I am having an MRI of both shoulders, and an x-ray of my right elbow. If my shoulder needed replacement a year ago, these test results are going to be a no-brainer. I know with full certainty that my shoulder has collapsed. You all know what I am talking about. We are the experts here. So I notified my employer last week about my shoulder pain and my previous diagnosis. It was a day that I have been dreading because they have been so patient with me through out all of this. My employer and my co-workers have always been extremely supportive, but then I feel like “every 6 months or so” I am going to let them down again. How much more can we take of this? It seems like a slow moving roller coaster ride that won’t stop and let you off, even for just a moment. I have gotten so depressed at times that when my wife and two children are out of the house, I sobbed. LOL, I didn’t sob, I FULL OUT broke down crying from the pain. A grown up 47 y/o man, a cop no less (we aren’t supposed to have emotions I am told), with enough tears rolling down my face to fill my poor old broken, long gone in a landfill somewhere (probably laying right next to my Scaphoid bone) camouflaged coffee mug........If you were able to get thru this long story, Thank You! But most of all, I want to thank everyone on this page, especially the founder, for giving us a place to vent, cry, and laugh. More importantly though, a place to come for support when you have hit the lowest of lows. I think we can all agree that we are extremely grateful and owe them tremendously.
Signed,
A survivor of the class of 2014.
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