My last post was in February, and ironically it was about my MRI results of my brain, and this one is about the MRI results of my right shoulder.
You’re probably wondering what’s going on with my right shoulder so I will condense as much as possible-just know the last 3.5 months have been a complete sh*t show in regard to my health. Early March my right shoulder started bothering me-just a twinge of pain here and there-usually with a specific movement of that arm, definitely not all the time. I go to Colorado mid-March with my sister for our Cousin Trip and it really starts bothering me daily-feels heavy, lymphedema flares up, difficulty sleeping due to pain, living on Ibuprofen, Voltaren gel, and the occasional morphine to sleep.
Get back home to STL and get my Oncologist to order X-rays of shoulder and humerus (upper arm). Negative other than slight AC joint separation-the AC joint is where your collar bone meets your shoulder-but no big deal. Recommended to ice and rest. Within a week pain is worse-referred to Ortho doc. He says it’s frozen shoulder, let’s do a steroid injection. BUT FIRST let’s do some lab work to see what my inflammatory markers are. Guess what? They’re crazy high. Imagine that. So he has me see his NP who tells me we can’t do steroid injection now, let’s get a CT of your shoulder. THEN 3 days later I get a call that we aren’t doing the CT now, but a shoulder aspiration instead. (Take sample of fluid out of shoulder joint with a needle). I’m flabbergasted at this point because now it’s been 3 weeks since my X-rays, pain no better, losing range of motion, and nobody can tell me what the plan is regarding this aspiration-and the office nurse has called me by the wrong name 3x so I’m beginning to wonder if they even have the correct patient…..So I call one of my very fave Rads in KC. He gives me some great guidance and scenario plays out how he thought it would. Aspiration gets yucky yellow fluid, Ortho freaks out and decides I have a septic arthritic shoulder and need surgery ASAP.
Surgery on 4/25 to clean out the ‘infection’ in my shoulder joint. Then refers me to Infectious Disease Dr who recommends 30 days of IV antibiotic to be administered by me at home through my port. Yay! Time to start the pro-biotic!
Home post shoulder surgery 4/25/2022
At one week post surgery follow-up my stitches are removed and Ortho Dr discharges me from his care-ummm, doc, I have worse range of motion, and horrible pain still. Oh, and NP gave me no pain meds to take home so I’m assuming I shouldn’t be having pain. He reiterates I just had surgery, give it some time and bye-come back anytime if I need anything else. Oh, and my cultures didn’t ever grow back any type of infection or organism and it probably never was an infection-likely frozen shoulder. Again, flabbergasted.
Now I’m questioning the pain I’m having and if it’s really that bad. Start doing some therapy on my shoulder for what we are now thinking is frozen shoulder diagnosed by way of a completely unnecessary surgery and even more unnecessary antibiotic use. Pain gets worse. Range of motion worse.
Go to PCP and he’s wondering where any imaging is that he’s sure my Ortho Dr did. Well, there isn’t any. Orders MRI of shoulder. But before that can be done I end up in the hospital with a horrible episode of Colitis (think 22 trips to the bathroom in about 12 hours) GI Dr comes in and decides to do a simple blood test-iron. My iron is 16! Low end of normal is 38, I have less than half that in my body. GI doc thinks my low iron, red blood cells and hemoglobin along with massive NSAID use and 30 days of antibiotic caused the colitis. More IV antibiotic, this time for a REAL reason and an iron infusion and home in 2 days. Continue 10 days of oral antibiotics at home.
Iron infusion #1 in the hospital
Home Sweet Home…..I’ve got no more abdomen pain, just some nausea. Pro-biotic has helped with excessive diarrhea. Shoulder and upper arm are killing me. Range of motion so bad I can no longer even bring my right arm up to my forehead without pain-now everyone is thinking it’s a rotator cuff tear. No more ibuprofen. Set up for 3 more iron infusions over next 3 weeks and then re-evaluate.
Finally MRI of my shoulder was 6/22 and I got results on 6/27.
Drum roll please……..
Worse than anyone expected. Or even could have imagined.
Right humeral head shows large focal area of osteonecrosis with mild flattening and collapse of the humeral head. Associated adjacent bone marrow and soft tissue edema. Small glenohumeral joint effusion.
What does that mean in non-medical jargon? Basically the round part of my humerus that fits into the shoulder joint space is dead. Yep dead. D E A D. Osteonecrosis is also referred to as Avascular Necrosis meaning the blood supply to the bone has been shut off somehow. The other words mean swelling and fluid around that joint too.
It gets better…..I also have moderate tear of one of the rotator cuff tendons along with fluid there too. Oh, and subdeltoid bursitis and biceps tendinopathy. And let’s not forget the joint effusion-otherwise known as a pocket of fluid in that area too.
Whew. I think I covered it all. I mean, go big or go home right? I went big this time. Big BIG.
We’re still trying to figure out how this happened as shoulder osteonecrosis is not very common at all. Actually it’s considered rare. Again, leave it to me.
Was referred to a new Shoulder Ortho doc by my PCP and that guy’s nurse called me back today and he won’t even see me because my issues are way out of his comfort zone-thanks for being honest. Oncologist gives me a name-call them today and it took 4 hours to decide if they would even see me since another Doc had already done surgery less than 90 days prior and if so, who in their group. Good news-I have an appointment with a new Ortho guy who specializes in shoulders on July 14th. Further out that I wanted, but ahem. I digress.
What is the fix for this debacle you ask????
Shoulder joint replacement is the most likely answer. And probably going to happen pretty quickly after that appointment. Woo-hoo, I’m so excited to have this surgery (Insert extreme sarcasm here) hey, maybe this arm will be bionic with my new shoulder!?
Ahem. Again.
In the meantime we are heading to KC this weekend to go to the Kenny Chesney concert we bought tickets for in 2019. Thanks Covid. But we are really looking forward to it because our cousins from NOLA are coming up to go with us along with my girl and Logan and my Sis and her man. And we’ve been waiting 3 years darnit! Anybody else going? We’ve got floor seats and I’m sure we’ll be doing some parking lot pre-gaming so hit me up for a pre-concert cocktail if you’re going.
We also plan to take the NOLA people to some gas station BBQ, and maybe the biggest and best chicken wings ever-it’s a KC thing iykyk!
That’s all for now-promise I won’t wait 3.5 months before I update again. And it will all be good news. It HAS to be, cause I’m maxed out on crappy news.
At least everyone else is well!
Hope y’all are having a great summer so far and have a safe and happy 4th of July!
-k
