SIRVA 10 month update

My own news is good this time—I am finally seeing some improvement! I hope the same feeling of pain relief visits all of you with a Shoulder Injury Related to Vaccine Administration (SIRVA). It is a bit early to claim victory, though; I’m not 100% pain free in the shoulder by a long shot, but the trend is better and better on a weekly basis.

October 13 marks my 10 month anniversary of the flu shot that gave me SIRVA and potentially a bone infection. Here is the back history:

It’s hard to believe 3 months have passed since surgery, and over 1 month since the antibiotics ended. Since then, my range of motion has improved and I can do a few more things functionally without pain that used to bother me, like shampooing my hair. I’m taking baby steps towards returning to the one sport I truly love, rock climbing, by gently strengthening my arms and forearms and fingers and core as much as I can without going too far, too soon, with the overhead movements.

The timing of the feeling of improvement suggests to me that either the surgery was successful (irrigation, debridement, PRP, new blood flow to the area; all could be responsible) or the infection was a true positive and the antibiotics caused the bone damage to start repairing (and hopefully, eventually, reverse completely—but it takes time). I’ll never know for sure which it was. I’m going to make sure I get a 3rd MRI by about the 1 year mark, if they let me, to assess the appearance of the bone marrow edema.

The biggest takeaways I have from my experience so far is:

  • Try to advocate for getting an MRI early and, if your pain hasn’t resolved, make sure they let you get another one later. The early one may be important to prove that the changes took place due to the shot, and weren’t pre-existing issues. Bone damage appears to be pretty common with SIRVA. My MRIs were at 1 and 6 months post-shot. At 1 month it barely showed up and the doctors didn’t catch it as a part of the problem. At 6 months it was obvious.
  • With no improvement at 6 months it seemed like it was time to take more drastic steps. Surgery was the right decision for me. (…..or maybe I’d have had this improvement anyway with just more time and no intervention. Who knows! But with average time to recovery from SIRVA anecdotally being EITHER very fast—i.e. within the first 3 months—or very slow—1-2 years, it seems like if you’re not lucky enough to fall into the first group, you may as well try to accelerate things to avoid it taking years.) Surgery was also very painful, unpleasant, and there may be other reasons why it’s not the right choice for you in your situation, but it seems likely to have been the catalyzing factor in my improvement (for whichever reason).
  • The medical literature on SIRVA does not mention bone infection. The effect of P. acnes infection in the body is currently controversial, and the rate of false positives is high. But bone infections from punctures and other shots are known to be possible. If you are already having surgery, and have bone damage on an MRI—I’m no orthopedic surgeon and I find they don’t take kindly to suggestions, but you might also ask about getting biopsies while they are in there, and including P. acnes in the biopsies as it is commonly found in the shoulder skin and sometimes takes up to 2+ weeks to culture, so they need to hold the samples at least that long. My surgeon biopsied the bone and 2 other places in the synovial tissue and only the bone sample came back positive.

I’ll repeat again a quote from a paper by Hexter et al., 2015, in the journal Shoulder and Elbow:

“The patient in our case only regained a pain-free and functional shoulder after [surgical] washout, arthrolysis, synovectomy and decompression of the subacromial space. We recommend invasive treatment, such as that described in our case, in patients with ongoing shoulder symptoms related to vaccination that do not settle with conservative measures.”

I’ve gotten a bunch of responses to the SIRVA Survey (THANK YOU!!) and will post some information soon about what you all have tried. However, most of the folks who’ve filled out the Sirvey have done so because they haven’t recovered yet and are still searching for solutions, so I still don’t have a sense of what else people have tried that has really worked. Please, please fill out the follow-up survey if you have filled out the first one already and have changes to report!


For those of you still struggling with lack of improvement, or even worsening symptoms (mine got worse at around the 3-month mark), I am really sorry. I hope that every story of improvement and recovery at least brings a little comfort that your SIRVA pain will eventually resolve. Other peoples’ stories have been helpful to me, so I am trying to add my own to the digital pile. Thanks for sharing your experiences with me, either through the Survey or by email.

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Hi, I'm Amy, and I started this webpage when I got SIRVA to help gather together information about treating it.

10 thoughts on “SIRVA 10 month update”

  1. I received a Shingles Vaccine shot 4 months ago. The pain in the shoulder initially was red and sore. As the days went by the pain got more severe. I have to sit up in bed to rollover. It definitely affects my sleep and every day life.. I did get the shot at the pharmacy. I thought it was a little unusual how high in the arm he was give me the shot and kind of a weird angle
    I do need to go back and get the second shot. I do not want it in my other arm to have the same problem on that side too. More than a little nervous and getting vaccinations at the pharmacy just to please the stupid insurance company.

    1. Dang, Correen, that is a tough position to be in to have to go back for another so soon after getting injured from the first. For me it was the flu shot so it was just a question of whether to get the shot voluntarily again the next year. The next time I get one I will definitely want to see the most reliable person I can think of to administer the vaccine. That’s too bad that your insurance company wants you to go to the pharmacy. However, where I live we have a Pharmaca pharmacy and I have seen two extremely knowledgeable and competent pharmacists there, I would go back there and trust them for sure (that’s not where I got the shot that gave me SIRVA in 2017, I was at my doctor’s office). In fact my friends have been going there and telling these guys about my experience and both of them are fully aware of what needs to be done to avoid SIRVA. So maybe you can also find a great pharmacist somewhere else.

      Good luck and hope you heal quickly!

  2. Thank you for this website, Amy, it’s really helpful. I hope your symptoms have continued to improve after your surgery. I was hoping for a follow-up post!
    I’m in my 9th month of pain from SIRVA. Here’s a question I can’t seem to find the answer to: What percentage of people completely recover after a year or two of waiting it out?
    Thanks

    1. Hi Christina! Your question is exactly the same as my question!!! I wish I could say that the SIRVA Survey had those answers, but it doesn’t, because on average people fill out the survey 2.5 months (well, median 2.5 months, average is 8.9 months) after getting injured. By far the majority of people filling it out aren’t healed, which makes a lot of sense—-people are looking for information, and they find my web page, when their shoulder is still bothering them. I hope more folks will remember to come back and fill out the follow-up survey when better to say, Oh, yeah, here’s what I did and it finally got better after X months.

      1. cont’d.

        I imagine there are a lot of people out there (I hope) who got better (i.e., “completely recover”) after 3, 5, 9, etc. months and are not searching for information anymore, but I tend to hear from the worst cases, which, unfortunately like my own, are still a problem over the span of years. So I think the percentages end up seeming worse than they really are.

        Sorry I can’t say with more confidence the answer to your question. I wish I knew, too!!!! It would be nice to be able to tell people, well, 65% are better in a year without doing anything but rest, but 35% need surgery to finally get better, or whatever the numbers end up being.

  3. Finally I’ve found a place on the Internet that is helpful by reading other peoples’ experiences. I’m at exactly one month. Had the flue shot at CVS and thankfully in my left arm. Hard to wash hair, pull up pants, put on deodorant, you know the rest. I read somewhere that if you have pain at night you likely have SIRVA. That was the clincher for me. The pain at night is so intense even if I’m on my back with my arm straight out at my side. Not sure why. Someone wrote that if you get the shot in the wrong place you might not be protected against the flu. I’d love to know the answer to that especially with Covid-19 in the atmosphere.

    1. Hi Vivien. Symptoms sound very familiar. At just one month, hopefully you will find that your symptoms resolve quickly—some people get better in less than 3 months. I certainly hope that’s the case for you too.

      I don’t know the answer to the protection question, but I worried about it too. When I got my shot in 2017 it was a very bad flu season and I was pretty nervous about that–not only did the shot wreck my shoulder, did it even do what it was supposed to do?? Someone specializing in immunology would be best to say.

      Best wishes
      Amy

  4. Oct 26th the covid shot from research study.
    pain in the area since then.
    November 8 very painful and cannot move my arm up or to the side only so far but painful. painful to drive put arm in coat and not able to lift. burning where I received the shot no redness. The pain goes all the way up to the shoulder and the back of it . It hurts if i’m not doing anything as well. Went to the doctor going to get my mri on Friday I have put off the second dose until I can get my MRI . I don’t need any more issues ! I have heatpad and iced and no better. Now I wait !

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