So, my right shoulder has been hurting for a long time. Like, well over two years. I thought it would just work itself out, but it didn't. About 6 months into it really hurting, I went to my general practitioner. She gave my some drugs to try (steroids, muscle relaxers, etc) and some exercises. She noted that I had lost some range of motion and wanted me to do physical therapy, but I'm too poor for that. Using my Google MD, I diagnosed myself with a torn rotator cuff and learned that nothing really fixes it except for surgery. This past baseball season, the parents would warm up with their child by playing catch. I was really bothered that I couldn't do that with Jack so I resolved to suck it up and take care of my shoulder this summer. I made an appointment with an orthopedic surgeon shortly after we got back from our family vacation. The doctor briefly listened to my symptoms and then proceeded to inform me that he was sure my problems weren't structure. He was fairly confident I had bursitis and that a few shots and physical therapy would fix me right up. However, he ordered an MRI just to rule out any tears in my rotator cuff.
I went in for the MRI with contrast without really knowing what contrast entailed. Apparently, contrast means getting super painful shots in your already painful shoulder. Anyway, I did the MRI and tried to schedule the follow-up with my surgeon for before I left on my sister cruise. They couldn't fit me in so I scheduled it for right after I got back.
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| Me right before MRI - I thought it really funny they gave me a gown AND pants AND a robe |
I went in for my follow-up appointment - fully expecting the MRI to show nothing and to get started on shots and physical therapy and to take care of this annoying shoulder situation once and for all. The doctor popped his head in and said he was going to go read the radiology report and would be right back (don't you love a doctor who isn't even prepared for the appointment?). When he returned, he had a funny expression on his face and he pulled his stool up and asked me to once again describe the pain I had been having. I detailed it again and he then informed me that the MRI showed a bone tumor in my humerus. I was like, "What's a humerus?" He then took me back to the office area to show me the tumor on my scans. It looked really big and seemed to take up the majority of my shoulder. I asked him how big it was and he said it was around 1 inch by 1 inch. Which doesn't seem very big, but when you make a circle with your fingers around that size and hold it up to your shoulder, well, it takes up a lot of space. He told me he could tell it had been there for a very long time and it was slow growing because the lines were smooth. The radiology report couldn't identify what it was exactly so he wanted to send it to a radiologist he sometimes worked with. He said this guy used to be an orthopedic surgeon in England and switched to radiology when he moved here. I asked for a timeline and he said he would get back to me by the end of the week. Friday rolled around and I still hadn't heard from him so I called his office. I spoke to his nurse and she assured me she would check with him and get back to me. Tuesday came and I still hadn't heard so I called again. His assistant said she would get back with me the next day. By this time I had lost all confidence in this doctor so I contacted an attorney friend of mine that I used to work for who represents doctors in medical malpractice suits. He always knows who to go to and who not to go to. He gave me a referral for an orthopedic surgeon down in the med center.
I never did hear back from my original doctor - even though I had spent hundreds of dollars between the two appointments I had with him (I have a $2500 deductible before my insurance starts paying 20%). He basically just told me I had a tumor and then left me high and dry with no diagnosis or treatment plan. I was able to get a CD of my MRI and the radiology report which I took to my new doctor. This doctor has 35+ years experience. He read the radiology report and looked at the scans. He also left me 4 different times during my appointment to go confer with other doctors. He finally came back and told me he thinks it is necrosis, but he wanted me to get a bone biopsy and then see a different doctor in his practice who had more shoulder experience.
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| Sabrina dropped these brownie bites off the night before my biopsy. She gets me. |
So, last Wednesday, Tom took me to the hospital to get my bone biopsy. They did blood work first to make sure my blood clotted, and then they took me to radiology because they had to do a CT scan to guide them while doing the biopsy. The radiologist told me he had looked at my MRI and that it looked "benign-ish" to him, but he couldn't tell what kind of tumor it was. He seemed surprised he couldn't diagnose it. I asked if it was necrosis and he said no. They then gave me conscious sedation and did the biopsy. Afterward, they monitored me for a couple hours and then I got to go home. I found out that bone biopsies in the shoulder are particularly painful because the shoulder is very hard and it is tricky getting in there. I woke up the next morning unable to raise my arm and feeling like someone had taken a sledgehammer to it. But, I was relieved to have it over with and to finally get some answers.
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| I don't think I've ever flashed the peace sign in my life. I guess that is what I do when trying to pretend I'm not nervous. |
My follow-up appointment with the new doctor was supposed to be today, but they called me this morning and said I would need to reschedule because the biopsy results weren't in yet. Something about bone samples taking longer to grow than tissue. Of course, the doctor was going out of town so the soonest I could get in would be a week from today - next Monday. And so the waiting game continues.
I haven't really told anyone about my shoulder situation - mainly because I just don't know what it is. But it is making me crazy. I have done way too many Google searches at 3am and they aren't comforting. I'm not really worried that it is malignant. Everyone that has looked at it says it looks benign. But, it is big. And it is causing me significant pain. It is going to need to be removed and removing something that large from bone is not going to be pleasant. If I thought the little bone biopsy was bad, well...this is going to suck. Another kink in all of this is that I go back to school in 2 weeks. And my deductible starts over September 1. Which means I am going to have to come up with another $2500+ and the time for a major surgery. So, these are all of my worries. The things that keep me up at night and are always on my mind. I know it will all work out, but I just need to know what exactly it is I am dealing with and what exactly I need to do to deal with it.
Update: I lied when I said I thought it was benign. Thanks to Google, I have diagnosed myself with chondrosarcoma. 🙄
Update update: After waiting for 2 hours in the doctor's office, I was given the pathology results - avascular necrosis. It's not great, but it's not cancer! I go in Monday to discuss treatment options.
Update to my updates: I went to the shoulder specialist on Monday. Unfortunately, there is no cure for osteonecrosis. I just have to wait til it becomes debilitating or my shoulder collapses, at which point they will give me an artificial shoulder. I was disappointed to realize that chronic pain was going to be my new normal, but I realize it could be much worse. I will be doing physical therapy 3 times a week for a month to learn exercises that will help me with range of motion and pain.
