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This website is new, so bear with me while we wait for more responses to the Sirv-ey (haha). In the meantime, I’ve collected SIRVA data from papers in medical journals about shoulder injuries from misadministered vaccines and added it to the survey responses, so we have something to look at. But first, a few observations about the survey data, starting with the most depressing:

• 100% of respondents had seen a medical practitioner or several who expressed skepticism that the vaccine shot was the cause of their shoulder problems. Some doctors had never even heard of this happening. Orthopedists were more likely to be aware of the problem of SIRVA, but among respondents there were some orthopedists/shoulder specialists who expressed skepticism. (How do we increase awareness of SIRVA in the medical profession?)
• Everyone could point to a special activity or sport, from the very athletic to the typical (e.g., picking up their kids) that they are limited or unable to do because of their injury.
• So far, all respondents are still currently in the middle of their injury (average length of time since shot: 1.4 years). This makes sense because those of us in the middle of our injury are the most likely to be searching the web and seeking out more information. I hope to get some survey respondents who have fully recovered and can tell us how long it took.
• Cortisone shots appear to be of mixed effectiveness. In the literature, 23% of SIRVA cases were reported as getting cortisone injections. In our survey, 75% of respondents had a cortisone injection, with most reporting it to be “slightly helpful” and one person reporting it as “made symptoms worse.”

Most of the medical literature cases report on the patient’s recovery after the injury has resolved, although some are published while the patient is still not 100% or did not report follow-up visits. Analyzing the data is difficult, but at some point I will look at this more closely. Most cases presented in the literature resolve in less than 1 year, but in one study, only 31% report “full” recovery, with the remaining 69% reporting residual symptoms at the time of publication. I really hate typing up things that don’t give me hope, but I’m also going to report it like it is. (One can hope that the 69% with residual symptoms did eventually fully recover, just not in time for the publication of that paper.)

At (almost) 4 months out from my flu shot, I’m particularly interested in the question of whether some type of surgical intervention would cure the problem. If so, I would do it, but my orthopedist here at home counsels patience. In Atanasoff et al. 2010, 31% of cases (4 out of 13) eventually had surgery; in a broader look at all the data I could collect (total of 38 patients), 37% had surgery. I don’t know much about what these surgeries entail or how they differ, but types of surgery reported in the literature included:

• Irrigation or surgical joint washout (43%), e.g., 4.5 L normal saline irrigation (Floyd et al. 2010, Cross 2016)
• Distention arthrography (for cases where frozen shoulder is involved) (43%) (Degreef and Debeer, 2012)
• Debridement (one case) (Floyd et al. 2010)
• Subacromial decompression/synovectomy (one case) (Uchida et al. 2012)
• Resurfacing of humeral head (for cases where bone damage is observed) (one case) (Messerschmitt et al. 2012)

Thanks for reading; this has been “a quick squint at the data.” More to come when there are more responses to the survey!

At the time I started this website with my first post about SIRVA, I was almost exactly 2 months out from the fateful flu shot that caused my shoulder injury and was casting out for ideas about how to reduce the pain and recover sooner. Today is exactly 3 months out and I thought I’d provide an update on where things stand for me. Although at this point I still have more questions than answers, I have found other peoples’ posts like this very helpful (like this one and the follow-up posts), so here is my experience.

Month 1: Panic, diagnosis

My flu shot was on December 13, 2017. It hurt right away, much more than in years past. About 2 weeks after my shot, still in intense pain, I went into an urgent care clinic (it was the holidays, I couldn’t get an appointment with my doctor) and the doctor there was skeptical (didn’t think it was the flu shot) but gave me a referral to an orthopedist (shoulder specialist) and told me to see my primary care doctor when I could.

Month 2: Appointments with everybody

By the time I got an appointment with them, it was about a month after the shot. My orthopedist did a few tests with my arm to feel out the pain and immediately recognized that the problem was subacromial bursitis/impingement caused by the flu shot (UPDATE: This was probably not an accurate diagnosis of where the flu shot entered, but it was the best he could do with the tools available at his clinic.) He says he sees a “couple of cases of this every year” (so where are all of us? WHY DON’T MORE DOCTORS KNOW ABOUT THIS?) and said he thought it would resolve in about 3 months total. He ordered an MRI to confirm that there were no rotator cuff tears.

The MRI came back and my orthopedist told me he sees evidence of “significant fluid” in the subacromial bursa, confirming his original diagnosis (again, please read the update). He gave me a cortisone (steroid) shot to the subacromial bursa, along with a warning that it might not help; indeed, it increased my pain for a few days and when that wore off it wasn’t any better.

I also started PT, but all of the practitioners I talked to were of the opinion that there’s not much that can be done with physiotherapy for the actual primary injury (it is, after all, an immune system-generated reaction to the vaccine in the wrong place that causes the inflammation), but PT is important to avoid potentially getting a frozen shoulder. By the time I started PT, I had tension, stiffness, and pain in a whole constellation of muscles surrounding the injured shoulder. I find that PT helps with that, and they can work on “tightness” of the shoulder capsule, but they can’t make the vaccine agents flush out of the shoulder joint any faster, as far as I know.

Month 3: Trying everything

I’ve been doing PT, home exercises, NSAIDs (440 mg naproxen twice a day), and all manner of balms and creams to take away the pain in these 3 months, and I just have to say that the pain goes up and down and I don’t know what helps it and what doesn’t. For the sake of my sanity, I’ve been running, also on the theory that pumping my arms will help with circulation in the shoulder (and it doesn’t cause extra pain because it’s not reaching overhead or anything), but I don’t find that running helps or hurts. I have tried (briefly) acupuncture, laser therapy, kinesio tape, and massage. I can’t say any of these things help, and they certainly hurt the wallet.

My pain surged greater for no apparent reason about 2 weeks ago (2.5 months out) and manifests right now as constant aching in the muscles around the shoulder, as well as sharp pain in the shoulder when I reach forward or overhead or behind me (as if to grab a seatbelt in the car). On the advice of the acupuncturist, I started keeping a pain diary, which will help me keep track of which treatments seemed helpful.

Please leave a message with your experience with SIRVA and please take the SIRVA survey so we can all learn more about what has and hasn’t worked for you. THANKS!

On Feb. 16, 2018, Sen. Markey introduced legislation to provide significant funding to aid in development of a universal flu vaccine, and Rep. DeLauro introduced a version in the house on Feb. 26. I strongly support this and I urge you to as well. Please drop Sen. Markey a note to thank him for introducing this legislation, and, more importantly, write to your own senators and representative to encourage them to vote for it. The text of my letters to my legislators is given at the bottom of this post. Please feel free to use it.

Why is this a good thing?

A universal flu vaccine would eliminate the need for yearly shots and would drastically reduce the number of shoulder injuries from mis-administration of the vaccine. In fact, changing the structure of whole flu shot delivery system could result in fewer and better-trained administers of the vaccine, instead of the current system, which aims to get as many people vaccinated as quickly, cheaply, and extensively as possible. By putting less-frequent vaccination in the hands of better-trained individuals, peoples’ shoulders will be saved from accidental injury due to poor understanding of anatomy. As a SIRVA sufferer, I want nothing more than to see an end to (or at least, drastic reduction) in the number of cases of people whose livelihoods, enjoyment of sports and activities, and quality of life are damaged by it.

This article from WIRED argues that the biggest impediment to producing a universal flu vaccine is a lack of incentive from pharmaceutical companies, who profit handsomely from the current system. A universal flu vaccine faces scientific obstacles as well, given the rapidly-changing nature of the virus from year to year; the cost to successfully produce such a vaccine is assumed to be astronomical, although several research teams report progress in that effort.

Of course, it also needs to be mentioned that the effectiveness of the yearly flu vaccines, for all the injuries they cause (e.g., SIRVA), is never 100%. However, it has been shown to reduce your chances of getting sick and helps keep the illness from spreading. When communities vaccinate, fewer people die. This NYTimes article provides a good explanations of the numbers, and explains using simple statistics why even in a year where the vaccine ends up being less effective, it still saves lives. (Yes, I get annoyed when it says complications are extremely rare and links to the CDC’s page which does not mention SIRVA as a possible complication—despite the fact that they are fully aware of it and accept it as a recognized injury related to vaccination.)

Please write your legislators!

Here is my letter to my two senators and House representative about the Flu Vaccine Act. Please feel free to use it, maybe adapting the bit about when you got SIRVA. Or, if you didn’t get SIRVA but know someone who did, change it accordingly! Thanks for your support.

Dear ——,

I am one of your constituents and am writing to urge you to vote yes on the Flu Vaccine Act. The development of a universal flu vaccine will have many benefits to community health and safety, both in terms of lives saved and downtime averted by fewer people getting the flu, but also fewer injuries from mis-administration of the shot. As someone who gets a flu shot every year, and wholeheartedly understands the science and statistics behind the drive for comprehensive community immunization, I was shocked and devastated to suffer an injury known as SIRVA this December (Shoulder Injury related to Vaccine Administration). Not a side effect of the vaccine itself, SIRVA is caused by the giver of the vaccine (e.g., medical assistant, pharmacist, nurse, doctor) missing the correct target muscle (the deltoid) and hitting and damaging structures in the shoulder itself, such as the bursa or tendons or even bone. While I’m told it is pretty hard to screw up this badly, because the flu shots are widely disseminated in a campaign to achieve maximal coverage, many poorly-trained administrators of the vaccine are out there, some of whom have limited knowledge of anatomy and can—as I have now experienced—badly injure their patients. If you don’t believe me, there are multiple peer-reviewed journal articles documenting SIRVA, but this is a good place to start: http://www.jabfm.org/content/25/6/919.full

The bill will ultimately have financial benefits as well; SIRVA injuries led to compensation from the National Vaccine Injury Compensation Program totaling $71 million between 2011-2017 (reference: https://www.cdc.gov/vaccines/acip/meetings/downloads/slides-2017-10/vaccine-safety-02-nair-508.pdf). That is, the investment in a universal vaccine will save significant money in after-the-fact payments to injured people, not to mention the pain and suffering it will avoid.

It is my understanding that there is significant financial disincentive on the part of pharmaceutical companies to develop a universal vaccine, as they profit considerably from the current system of yearly shots (https://www.wired.com/story/flu-vaccine-big-pharma/). Some have called the development of a universal flu vaccine a “Manhattan-project” sized effort, which will require government support at a high level to achieve success. But the payoffs will be enormous for the people, if not for the vaccine manufacturers.

Because a universal vaccine will allow people to avoid yearly shots from poorly-trained people, a happy side effect (in addition to, hopefully, better efficacy and coverage) will be fewer SIRVA injuries and the personal, financial, and emotional devastation they cause. Please vote to fund this research. Thank you.