I can't believe what a difference 8 days makes. I just looked at my last post and I can't believe how much updating there is to do. We canceled our trip to Disney, my husband is having knee surgery in less than two weeks and I found out that my favorite ortho that I wrote about in my last post has been keeping important info about my health from me. I guess you know why I haven't posted for a week. Trying to process everything that is happening so quickly has had me on an emotional roller coaster and I'm trying to make sure the decisions I make from here are good ones because they involve my whole family.
My husband has OA in his knee and has been treating it since March, he started to fall down last week and by the 4th time he wiped out on the driveway and ripped up his other knee he finally called uncle and scheduled an appointment. About this time I figured there was no way we were headed for Disney so I called my Ortho and asked him to write me a note to I could make a claim on the insurance I bought for our flights. Imagine my surprise when he told me no, yeah that was the first of many blows to come. Thankfully, my husbands ortho and his pcp offered to write him a note excusing us from going on a trip with a sprained ankle and a knee that was giving out (doesn't that sound like a fun trip, for awhile I actually thought we would have to go because we wouldn't get our money back, who goes to Disney when they can't walk).
My hubs is having surgery in 2 weeks, to say I'm scared to death about whether or not I'm going to be able to help him as he will need is weighing heavy on my heart. He has guided me through 8 surgeries and yes, there have been times he was awful but for the most part he has been really awesome and he's done it 8 times (not counting other procedures where I've been put under). He's my rock, and I'm usually the one in the wheelchair. I'm looking at things from a whole different perspective and I'm aware of how much he helps, I hope my body will hold up so I can repay him the favor.
Why am I so concerned? Well, beyond the obviousness of I have RA and that's totally unpredictable.
I found out that the little sprain we've been hoping will heal with some time in a boot has turned out to be a foot that has auto fused itself due to RA. After my ortho was such a schmuck I went to see my foot ortho (hes's done one of my foot surgeries already, he likes to cut) imagine my surprise when he pulled up an xray and told me that my midfoot had fused by itself due to RA and that it had been so long even the RA was gone. My mouth actually dropped open as I looked at the xray, my rheum has been telling me for years that my RA is inactive (I'm sure he would say I was in remission if he thought I wouldn't argue with him). Well, your body fusing your foot itself I'm thinking, pretty active. The problem with pain and a fused foot is did it fuse correctly? If not, surgery to fuse it correctly.
Ugh, foot surgery is hard and not fun. I know, I've already had two. In fact, we're still not sure if the 2nd surgery has fused. I need surgery on my right foot but I've put it off so long we think it might have finally fused, but we're not sure. So yeah, in two weeks if my foot doesn't feel better I'm looking at two CT scans to see what's going on in both feet and I could be looking at two more surgeries.
I walked out of that appointment mind blown. I really had started to believe my rheum that my RA was inactive, no matter how much I argued with him that it wasn't just that little space in the back of my head wanted so badly to believe this was just damage that was done before and now I was better, magically because my rheum said so and my labs are normal (43 years, hope springs eternal). I wanted to know when this happened, was it when I was off meds for surgery or when I was on a med that wasn't working as well. How could this happen when the pain wasn't horrible, how did I miss it so we couldn't have done something to fix it before this happened. That's when I remembered that I had an MRI taken a few month ago when I thought I had a stress fracture, my favorite ortho had done an MRI. I thought ok, I'll go get the results tomorrow and then thought what happens if the fusion does show up on the MRI and my favorite ortho didn't tell me. I went to bed and tried to put it out of my mind.
I got up the next day took the daughter out to lunch to stall on getting the report, we finally got done and I headed in to pick up a copy of the report. I thought in the car if I found out he knew and didn't tell me how is this going to help? Sadly, I needed to know how long it had been fused more than whether my doctor had withheld info from me. Of course I picked up the MRI and there it was 4 months ago in February we had taken xrays and an MRI and my foot was already fused correctly but there were other mild issues happening then that if addressed would have kept me from having the bigger problem I have now. He is of the thought process one disaster at a time (and yes, my body is a disaster) sadly, RA doesn't work on a time schedule. I have repeatedly taught him this lesson. When he did my back surgery he wanted me off my meds for 3 months, during that time my RA ate my subtalar joint and I needed a surgical fusion (3 MONTHS). RA waits for no man.
What was happening in February? I was fighting a bad bout of costochondritis and he was busy directing my health exactly the way he wanted because I was to weak to argue. I had a pulmonologist, cardiologist, ortho and a pain mgmt doctor working on me, I could hardly breathe and nearly passed out in his office waiting room. Again, one thing at a time, handle the ribs, ignore the foot. This time he just decided not to tell me what was going on so I wouldn't be even more stressed. Doctoring doesn't work like that, it can't work like that. He's not my spouse or loved one, he's a doctor and I realize that in the last 6 years I should have walked away way before now. If I had known that I had tenosynovitis in my tendons I could have had cortisone injections, or worn a boot, or stopped walking and used a wheelchair, 4 more months of beating on that foot has not helped the joint effusion or the OA or any of the small problems that are now probably a lot bigger after 4 months.
I feel stupid and duped, one because I missed it myself. I knew something was wrong, I kept telling my rheum. Then I went to a doctor I thought I could trust and he just decided not to tell me these things. It makes me wonder how many other reports that I didn't get to see have things on them that aren't fine either. So, learn from my mistake always ask for copies of the report when you have imaging done. If you don't know what something on that report means, google it, I do. Then bring that report back in to your doctor and ask what is this and why didn't you tell me about it?
I had another issue where a labrum tear showed up on a shoulder MRI, everyone told me my labrum was fine it was just a shadow, at least until he got in there and found a small tear. I was once under the impression that MRI's could see everything but I don't think they give as clear a picture as I thought. So, in 8 days I've gone from the possibility of no surgery to the chance of 2 foot surgeries. Needless to say I'm shocked and astounded. Especially when some of this might have been helped by a simple cortisone injection.
I'm obviously losing my favorite ortho, how would I ever believe a word that came out of his mouth again. I'm also thinking of firing my rheum. If he actually did more than just write prescriptions I wouldn't need an ortho all the time and possibly he would actually know how much time I spend in other doctors offices. Which is really perfect timing seeing as how I will be seeing my husband through surgery in a boot with a messed up foot (or two).
I'm worried, afraid, frustrated. I feel my trust has been violated in a way that I will never get passed (and this guy has saved my life twice). I know that taking care of chronic pain patients is hard, we don't ever get better. We hurt, we're grumpy, we know a lot about what ails us and we have lots of opinions that we bring to the table. Not telling us what is going on with our bodies is not going to solve the problem that is the chronic pain patient. Ignoring us, or not telling us about pressing health issues won't make us go away, it will just bring us back with bigger problems. I would like to say help us help you, because if you do that and tell me the truth about what's happening then we can fix it, then I can go back to my happy life where I don't spend all of my time in doctor's offices paying to send your kids to private schools instead of my kid.
The kicker? He paid extra attention when I was having the rib flare, over and above what he normally brings to the table. I wrote him a nice note acknowledging the care and I got him a silly shirt that said "I've got your back" (spine surgeon) and the whole time he knew he was withholding health information from me. A few appointments back he told me thanks and that the shirt didn't fit. I think I'm really glad that it didn't, he certainly didn't have my back.