Hi folks, today marks the 1-year anniversary of my shoulder injury due to a mis-adminstered flu shot (SIRVA) which hit the bone right about where one of the rotator cuff tendons (the teres minor) attaches. I see my orthopedist again next week, am planning to request a 3rd MRI to follow up on the bone damage, and am dealing with some relapse of pain (probably from pushing it too much) after previously reporting good improvement.
I’ve gotten a lot of emails from people through this site, and I always really appreciate hearing from other folks and giving advice to the best of my ability based on my experiences. I have found that the most common thing I end up writing about to people in emails is what to expect and how to deal with doctors, nurses, and other health care practitioners who have never heard of Shoulder Injury Related to Vaccine Administration and who are skeptical that it is even a real injury. I’m not a doctor, but I am a scientist, and I am doing my best to try to navigate the world of health care as a patient with SIRVA.
This post will describe my advice for you going into your medical appointments. As always, please let me know in the comments below if you have any other suggestions or advice or would just like to share your experiences as well.
First of all, I’ve started making a webpage to collect information about doctors who ARE knowledgeable about SIRVA so that people don’t have to be afraid of seeing someone who belittles their problem or tells them it’s not possible. This is going to require your input—please submit comments (on that page) if you have a positive experience with a doctor, and I’ll add them to the map; if you have a negative experience, say so too, and I WON’T add them to the map. Check it out here.
I know firsthand how devastating it can be when the people who should be the best equipped to help you are instead unfamiliar and skeptical. So do you guys—in the SIRVA Survey, nearly 100% of respondents have seen a doctor who had never heard of it and were dismissive. Here is my experience, in chronological order (this might be kind of boring, skip ahead to recommendations if you’d like):
- Urgent care doctor: never heard of it, said I didn’t have an injury related to the flu shot, but gave me a referral to an orthopedist (shoulder specialist)
- Orthopedist #1: Boy, I got really lucky here–he had heard of it AND treated several cases of it (“one or two per year,” he even said.) He ordered an MRI. But he didn’t accurately locate the injured structures in my shoulder (told me at first it was subacromial bursitis, and not damage to the rotator cuff and bone.) In fact, I think because he had previously treated cases that were primarily bursitis, he assumed it was the same, but SIRVA cases can be very different from each other.
- Primary care doctor: she had never heard of it, but she had actually been briefed by the urgent care doctor prior to my visit and did some research on her own, and was prepared when I came in to the visit. (She’s extraordinary, I know!). There wasn’t much she could do but say to keep seeing the orthopedist.
- Physiatrist: I chose Dr. Bodor because he was an author of a journal article about SIRVA (in fact, the first person to describe it in the medical literature, although he wasn’t the one to coin the term “SIRVA”). Of course he was quite familiar with it and my visits with him were wonderful. He’s the first doctor I added to the Doctor Finder Map. He was the one who pinpointed the location of the shot (using ultrasound), identified the rotator cuff and bone damage.
- Orthopedist #2: When my husband went in for knee surgery, I mentioned it to the surgeon, who also specializes in shoulders. He’d never heard of it, and was quite skeptical. I actually went back to him for my own appointment later when considering surgery because he was such a hot-shot well-known shoulder surgeon to top athletes. After a 45-minute appointment in which I showed him journal articles, he came around 180 degrees to the point that I would have felt comfortable having him operate on my SIRVA shoulder. However, he had a very busy schedule and couldn’t book me very soon, so I didn’t end up going with him after all.
- Orthopedist #3: Yeah, I know, it may seem like overkill to see so many doctors, but I am desperate to rock climb again so I will do anything for the sake of my shoulder. Orthopedist #1 also had a busy surgery schedule this summer, so once we decided surgery was the path forward, I saw #3 and ended up having shoulder surgery with him. I would consider him SIRVA-skeptical, had never treated any and had some definite gaps in his knowledge about it. Interestingly, the gaps in his knowledge may have been ultimately helpful (he “thought outside the box” when it came to the bone damage on my MRI), but there’s no way to know for sure.
The summary of all that experience above is this: I got very, very lucky that Orthopedist #1 had heard of SIRVA, because that gave me great comfort and hope, strengthened my resolve to learn everything I could about it, and made me feel less alone and misunderstood. Then, when I went to other doctors who knew nothing about it, I knew what I was talking about and could speak to them with confidence. In some cases (Orthopedist #2) I was even able to change the mind of a skeptic.
My Recommendations to You
Not every doctor, like Orthopedist #2 above, is willing and able to listen to a patient and learn something from them. It’s just a fact of life that SOME practitioners (in any profession!) have an ego that prevents them from absorbing new information from people who are supposed to know less than them (i.e., patients). Orthopedist #3 is like that. I wish you the best of luck at finding doctors who, if they have not heard of SIRVA, are ready to learn and help you. I bet that in a decade or two, every doctor and nurse will have heard of it and learned about it in school.
So here is the advice I have. In my experience (particularly with Orthopedist #2), a doctor is more likely to listen to you if you can show them medical journal articles. But which articles? You may only have a short window of time to catch their eye and get them engaged in skimming the papers. Also, not all of the papers on my Resources page are publicly available, and in some cases all you can bring is the abstract, but that is enough. So here are a couple that I would recommend you try to print and bring, along with why:
- This one is good, is freely available, and gets to the point quickly: “A “Needling” Problem: Shoulder Injury Related to Vaccine Administration”
For appointments with your primary care/urgent care doctor:
- This is the first article to really describe SIRVA and suggest some options for treatment (but I don’t recommend you get cortisone shots at your primary care doctor, have them refer you to an orthopedist): “Vaccination-related shoulder dysfunction”
- This article is quite important, because it comes from the U.S. Department of Health and Human Services, but you can only access the abstract. It covers 13 cases and first presents the term “SIRVA”. It is too bad that it is not freely available: “Shoulder injury related to vaccine administration (SIRVA)”
- Here is another good abstract: “Risk of bursitis and other injuries and dysfunctions of the shoulder following vaccinations”
- I would also consider providing information that makes it clear to your doctor that the CDC recognizes SIRVA as a real and true adverse reaction and is (slowly, not quickly enough) trying to do something about it. I don’t love this poster for reasons discussed here, but here is a poster you can print out and show your doctor from the CDC that clearly warns about the risk of severe shoulder injury from vaccines (even if your vaccine was not a flu shot): “Intramuscular Influenza (Flu) Vaccination Infographic”
- Finally, at an appointment with a primary care or urgent care doctor, make sure you get a referral for an orthopedist. If you don’t know which one in your local area is considered best for shoulder injuries, definitely ask around.
For an appointment with your orthopedist/shoulder specialist:
- An orthopedist might like this one because it’s in an orthopedic journal, as opposed to a Vaccine journal (abstract only): Here
- This is in a Radiology journal, but is very good and descriptive and makes the case for getting an MRI: “Radiological Case: Shoulder injury related to vaccine administration”
- This case is EXTREMELY bad, and hopefully most of us don’t have anything this horrible, but at least one well-known shoulder surgeon is a co-author (Joseph Iannotti) and it also makes the case for getting an MRI, and it is also fully available: “Progressive Osteolysis and Surface Chondrolysis of the Proximal Humerus Following Influenza Vaccination”
For later visits with your orthopedist:
- If you need to talk about bone damage, print these abstracts: Here and here
- If enough time has passed and you need to talk about surgery, make sure your surgeon is aware of this excellent article: here
Spread the word!
Finally, spreading the word about SIRVA throughout the health care profession is very important to me. There’s no excuse for how little-known it still is, when so many people have suffered from it. It may be exhausting and emotionally draining, but please talk to your doctor/nurse/physical therapist friends and family about SIRVA, and point them to the peer-reviewed medical journal articles listed here to help them understand that this isn’t some conspiracy theory. It may help someone else out when your medical friend then sees a patient with this problem in the future.