Thank you so, so much to everyone who has filled out the SIRVA Survey as of yet and into the future. Please don’t forget to update us with the follow-up survey if anything’s changed since you first filled it out. Your responses will help us understand what to do about SIRVA. My case is only one of many and I want to see if patterns emerge from other people who are also dealing with SIRVA.
So far what I can see from the Survey are many individuals with shoulder and arm pain of varying severity. Many of us have pain primarily reaching overhead but others have pain in any position, with jarring motion (like walking or running), and most people also have at least a few other motions besides overhead that are also painful (like reaching behind the back and/or pushing/reaching out in front). There are some less common symptoms, like burning, tingling, radiating pain down the arm. Some of the specific daily movements that cause people pain in the Survey are:
- trouble driving with that arm
- taking off a sweater overhead
- most excruciating pain was putting on, taking off a sports bra over my head
- reaching for seat belt
- pushing outwards against resistance (for example, the waistband of stretchy pants)
- reaching forward to pick up an item straight out in front of me
- hanging from arms
- cannot tie anything behind my back
- put on deodorant, brush hair, wash hair
- couldn’t “tip the can” (holding arm at 45 degree angle from body and rotate thumb toward the ground)
- putting on my coat, couldn’t lead with my hand/arm
- opening the gate to my backyard (the latch is above shoulder height)
Many of these that you guys describe are familiar to me as well, especially the ones having to do with dressing and driving.
The range of symptoms is understandable considering the different structures that can and do get hit in a mis-administered shot (like the different parts of the rotator cuff, the bursa space, the bone). Describing your symptoms to the doctor may help them zero in on the location of the shot and damage, but diagnostic imaging (especially MRI) is really pretty key here, and I recommend that you advocate hard for repeated imaging after a while if things are not improving based on plans made with the first one (here’s my example of why).
Also interesting to see are the places you all got the shot, who gave it, and what medical practitioners have been helpful or unhelpful in treating it. (Because I’ve gotten a lot of questions by email about what to do about it, I will soon devote a whole entire separate post with suggestions about unhelpful/skeptical/unfamiliar doctors who make dealing with SIRVA all that much more miserable.) But first, about where you got the shots that gave you SIRVA:
Shockingly many come from the primary care doctors’ offices and even the doctors themselves. I would have considered that a “safe” place to get a shot—but it’s also where I got mine and it was administered by a medical assistant. Here are the types of people who administered the fateful shots:
The most shocking story I read from a SIRVA Survey response was about three people at the same workplace who all got SIRVA on the same morning from the same person giving out the shot badly. This person wrote:
“The day I got SIRVA, 2 other people at my work got it that same morning (there were 4 different clinics at my work and us three got it from the same person). One of them got better quickly, another is a bit better but still in some pain and limited motion. Mine appears to be getting worse.”
That is horrifying. Along similar lines, though, I was in a doctor’s office when he called a well-respected shoulder surgeon at a huge medical center. That surgeon said that basically all of the SIRVA cases he had seen had been their own employees. That is, because the large medical center required all of its employees to get flu shots, as is common, the shoulder specialists were seeing the SIRVA cases among their own employees and coworkers. It’s a terrifying and sobering thought that even medical professionals (like this shoulder surgeon) can’t “get the word out” or somehow manage to get their own workplace to be preventative of severe shoulder injury among their own employees.
And then there are the statistics on which vaccine was administered for the mis-injected shot. I want to crunch some numbers from VAERS and other sources, but I think it is not a stretch to hypothesize that there are (a) rising numbers of SIRVA cases and (b) that the push to get the flu shot as widely disseminated as possible is responsible. (Still important to note that flu shots save lives.) Here are the results from the Survey about which vaccine was in the misadministered shot:
For now, this concludes this look at the SIRVA Survey data. I will get to the good stuff, like what people have tried and whether it is helping, when we get more data and patterns emerge. The problem is that most people filling out the Survey are not yet healed. This makes sense because we all go looking desperately for information (I sure did) while it is still at its most debilitating, and that’s when people found the Survey. So, please fill out the follow-up Survey. It’s not all bad news, though. Among the people who filled out the Survey who have recovered (everything but the pink pac-man in the figure below), for many of them it was in just a few months, almost all less than 6 months. That should be reassuring for many of you who are in the early stages of confirming you have SIRVA:
Well, for plenty of people it takes longer than 6 months and my website hasn’t been around long enough to capture the data from people who got SIRVA recently yet successfully recovered in 1-2 or 2+ years. As time goes on I hope to add myself to that bin. The 1 year anniversary of my shot is rapidly approaching and I’m doing better but still not feeling really close to recovered or pain-free for doing the things I love.
There’s actually a name for this! I received the flu shot by a pharmacist Oct 2017 & still have arm pain. I was unusually sore afterwards for several days, got to the point of the above symptoms, lifting my arm, reaching behind me, etc. slight burning. Got another flu shot, opposite arm Oct ‘18 at a CVS minute clinic. Didn’t even feel a pinch, slight soreness for the day. It’s been over a year & the pain has not let up, does it ever go away??
Brave of you to get the flu shot again!! I myself am still debating even though it is getting late for this year (http://sirvasurvey.org/getting-flu-shot/).
All indications seem to point to that SIRVA does, eventually, resolve for most people, but it taking 1-2 years is not uncommon. Sometimes surgery can help. It’s unclear to me if physical therapy helps anyone, but it probably can. Since your arm has still been painful for a year, you should probably see an orthopedist (try to find a good one near you who specializes in shoulders) and make sure they order an MRI since that is the best way to tell where the shot hit and what structures in the shoulder are still aggravated. There is a fairly good chance that the doctor may not have heard of SIRVA or will be skeptical. I find that bringing a few papers printed from journal articles (see http://sirvasurvey.org/resources/) has helped immensely with skeptical orthopedists. In any case even if they are skeptical you can still try to get them to order an MRI and take it to someone else for followup until you find a good doctor.
Good luck and keep me posted how it goes!
Hello. I am 2+ years with SIRVA injuries to my left shoulder (injection was IA not IM). I have had 2 additional flu shots in my right deltoid since then with no issues!! I ask for a smaller needle length, ( 5/8 is approved if under 130lbs), and confirm deltoid site before injection. I’m always nervous getting it, but I still believe in it’s benefits.
Thanks for the info Dee! I had to look up what the “IA” route means (intra-arterial?). I hope there is something that brings you some relief from the injuries—2+ years is such a long time. 🙁
That is really excellent advice about requesting the shorter needle length and confirming the right deltoid site with the person giving the shot.
Sorry. “IA” – intra articular. Basically my flu shot was injected too high, like the majority of SIRVA injuries. My first cortisone injection, was in just about the same spot as my flu shot.
Hi Dee. I had my Bexsero injection back in September 2019. The pain has gotten considerably worse in the past two months and I am having a cortisone injection tomorrow under guided ultrasound. How many cortisone injections have you had and how successful have you found them? Thanks in advance. Leah
Ahh, got it! Thanks for clarifying. The acronym threw me off.
I am a retail pharmacist, a co-worker administered a shingrx shot (IM) about six months ago. He missed the deltoid, he was standing and I was sitting. These shots (IM) should be given while seated only, including the administer. I am still in pain.
My SIRVA pain is going on 9 months now. I had a flu shot at a Walgreens the Sunday after Thanksgiving 2018 and woke up a few hours later will such bad shoulder pain that I couldn’t go to work. Since then, I’ve seen 3 orthopedists and a pain management physician. I’ve had an MRI and physical therapy. I’ve had 3 cortisone shots (one was with a guided xray/ultrasound). The pain persists! Next, I will be having an ultrasound since the docs (mostly skeptics) still haven’t diagnosed the source of my pain. A few people have suggested PRP (platelet rich plasma) treatment but my doc doesn’t recommend it. There’s no research to support or prove its effectiveness. My journey continues and I am frustrated beyond belief by the lack of help in the medical profession. I hope I will not have to endure this pain for the rest of my life. Thank you for having this forum to talk to others with SIRVA. I wish you all luck as you search for answers. If I find answers to my own injury, I will be sure to share it here for all of you.
Thanks very much Regie. I also wish you the best of luck in your search. As far as PRP I have gotten two types of comments about it:
1. Don’t do it (from one orthopedist): it’s untested, unregulated, maybe even dangerous
2. May help, probably won’t hurt: my surgeon added ACP during my surgery (I don’t know the difference between ACP and PRP but here they are implied to be the same thing: http://www.colliersportsmedicine.com/prp.php).
I certainly couldn’t say if adding it during surgery (as opposed to standalone PRP treatments) was helpful or not, but there you go. Also, bone marrow stem cell treatment (as I described here: http://sirvasurvey.org/surgery-vs-stem-cellsprp/) was considered by the doctor who suggested it, Dr. Bodor, to be an experimental strategy; he didn’t know if it would help or not and was very honest and upfront about that. We didn’t try it.
Please keep us posted!!
The cost of this injury has almost made me bankrupt. I couldn’t work for two months and the cost of treatment is getting more and more expensive. Funny that the flu shot was free, but ended costing me thousands.
I’m so sorry this injury has prevented you from working–I can’t imagine how stressful and scary, besides of course how financially devastating that can be. I hope that the legal system will do its job and compensate you eventually, but it takes soooo long and carries uncertainty until your case has worked its way through the court. It is unfair that it takes so long and in the meantime causes so much hardship.
Hope your case improves quickly and the pain gets better. Best wishes to you,
Amy