SIRVA 18 month update: good progress

You can probably guess from the lack of posts in a few months that things are going well for my injured shoulder. That’s true. At this point, I’m 18 months out from a Shoulder Injury Related to Vaccine Administration (SIRVA), and the last 3 months have been pretty decent ones. It still makes me smile each time I lift my arm overhead and don’t feel pain!

It’s not perfect, however, and there is still some lingering discomfort that I can cause in the shoulder by making certain movements (like tricep PT exercises with a band). I would say my arm is 99.9% better for daily use but only 95% better for active (heavy) use, which in my case is rock climbing. And sometimes in that context it feels like 95% better may as well be 0% because whenever it hurts I have to stop climbing, at least for a little while, and that’s not satisfactory. I’m often sore after climbing all around the injured shoulder (left side), and not on my “good” side, so obviously there is still some lingering difference between the two. Who knows what that difference is at this point, biologically speaking, inside the shoulder? Inflammation? Weakness in the tendon that was damaged during the shot and then surgically debrided, six months later? Bone healing? No idea. But at least I have returned to rock climbing in some capacity, and for that I’m extremely grateful.

I’ve had a few other orthopedic injuries in my past before SIRVA happened: a SLAP tear in my other shoulder (righty) from landing on the outstretched arm while playing ultimate Frisbee, and surgery to fix it; nerve impingement through the elbow; some mild elbow tendonitis; and I once broke my face in 3 places during a bouldering accident (don’t ask). One thing I’ve learned from these injuries is that recovery is never as simple as constant improvement. Here is my very scientific plot about my experience recovering from ALL my injuries, not just SIRVA:

The point is, we think recovery is going to be like the blue line, always increasing, always improving (maybe after a stagnant bad period at the start). Instead it’s more like the red line, up and down and up and down, but, hopefully, always with an overall positive trend. During the down-swings it is impossible not to feel dejected, to feel like it’ll never get better, that you’re working so hard (PT, babying the arm, patience, etc) to improve and yet you STILL have these setbacks, but it’s important to step back and realize that recovery is almost always this way and that you’re still on track for healing. (That is, unless you really did have a very bad setback and reinjured the shoulder. But most often for people it is just like the red cycles in the graph.)

Recently there was a very good article in the New York Times, I thought, that discussed claims in the US federal vaccine court. I’ve become aware recently that the existence of a “secretive government vaccine court that pays out millions” is a new popular anti-vaccine argument; an acquaintance who does not know my injury story brought it up just the other day. I told him that I have a claim working its way through this VERY court, and yet I am still staunchly pro-vaccine.

Anyway, this article discusses SIRVA near the end, not by that name but very precisely this condition:

A growing proportion of recent claims, about half of all petitions since 2017, do not involve the content of vaccines themselves. Instead, they refer to shoulder injuries, usually in adults, that occurred because a health provider injected a vaccine too high on the shoulder, or into the joint space instead of into muscle tissue. That may cause an inflammatory response leading to shoulder pain and limited motion.

…..

Dr. Meissner said public health authorities now emphasize training health providers to administer vaccines without hurting people’s shoulders.

While this may be a very mild way to describe the debilitating and sometimes personally/professionally devastating nature of SIRVA, it still brings me great relief and satisfaction, as I’m sure it does for many of you, to see SIRVA discussed in mainstream articles without skepticism like so many of us have experienced with our doctors and other health care practitioners (close to 100% of people in the Survey). I firmly believe that it is just a matter of time before ALL health care providers are fully aware of SIRVA, that people are better trained, and its occurrence starts dropping. We are just unlucky to have it happen on the leading edge of an epidemic of it, when many doctors are STILL unaware. As described in a 2019 paper:

There is speculation that the prevalence of SIRVA has
increased in recent years because so many injections are being
given in pharmacies, shopping centers, and other nontraditional
venues for medical care by personnel who may not have been
trained fully in the complex anatomy of the shoulder. Moreover,
some of these settings do not provide complete privacy.
Consequently, many people loosen their collar and pull down a
shirt or blouse exposing only the top of the deltoid, rather than
removing clothing as they might do in a private examination
room. If they expose only the top of the deltoid, a provider who
is not familiar with SIRVA can easily inject in the wrong
location.

Of course, many of us got SIRVA from mis-injection in doctors’ offices (like myself), or from nurses or other practitioners who should have enough knowledge of anatomy to inject properly:

 

A lot of you who have contacted me have wondered why I haven’t written about the legal aspects of SIRVA, and about the vaccine court. One thing I know for sure is that if you’ve searched for SIRVA on the web you’ve found the websites of lawyers, so you have definitely learned about it. I submitted my claim about a year ago and, as expected, it is slowly working its way through the court. I will write a more detailed post about my experience with that when I know more, and am interested to hear your stories, too.


Hang in there!! Thanks to everyone who has filled out the Survey, I always check the results and hopefully will be able to pull some useful information out of there for you guys. But it also depends on you filling out the follow-up survey to let me know how your recovery has gone, since most people fill out the initial survey pretty early in their SIRVA experience!

 

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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.

4 thoughts on “SIRVA 18 month update: good progress”

  1. I have been suffering with SIRVA for almost 4 years now and am thankful to come across your post. I am intrested in reading any information that can help with the healing of this injury.

    1. Crystal, I’m so sorry yours has lasted for so long. I am starting to hear about a maybe promising treatment even for cases that have lasted a long time and will post more when I know more.
      Best,
      Amy

  2. Amy,
    I was intrigued to come across your page this morning and have been reading through your many resources. I’ve been suffering with SIRVA nearly five years (yep, you read that right, 5!) as of next month as a result of a routine flu shot. I’ve had close to 7 cortisone injections, subacromial decompression surgery (and subsequent rotator cuff repair surgery), manipulation under anesthesia, a second subacromial decompression with full capsule clean out, and through all this endless physical therapy sessions. I have also tried accupunture, dry needling, yoga, massage therapy, you name it! Prior to SIRVA, I was in near excellent health! 40 years old, physically fit, active professional, mom of three. Needless to say this has drastically changed my life. I have been under the care of two orthopedic surgeons, both here in Boston and told to be the best. I am now considering a third opinion as I am at a loss. I am interested in hearing from anyone that is suffering from SIRVA for multiple years and/or post-surgery. Thank you!

    1. Maura, thanks for the comment and for listing all of the things you’ve tried and your experience. It is really tough to hear from someone who’s been suffering for 5 years and has tried every option recommended by top orthopedic surgeons—I think most of us (myself included) have always clung to the hope that SIRVA is likely to be temporary; I hear the numbers “1-2 years” for “full recovery” thrown around a lot but clearly that underestimates it for some. I’m still at fewer than 2 years and in the middle of a major setback that I haven’t written about (happened a few DAYS after this “good progress” blog post, go figure). I am also post-surgery (over a year now, whoa) but unlike you I would say I had improvement after it.

      As far as things you might consider. I am hesitant to say this too soon but I believe Dr. Bodor in California has been making progress with stubborn SIRVA cases. We spoke recently. Boston is very far from California though, and I think Dr. Bodor also considers his new observations very preliminary. When we hear more there will definitely be a post about it on this website.

      If you think the two orthopedists in Boston who’ve treated you are very SIRVA-knowledgable and helpful even though they’ve been unable to resolve your case, if you want to get them added to the Doctor Finder page, it would be great; many people have trouble just finding their first doctor or orthopedist who even believes SIRVA exists!

      Thanks again for writing because it is SO important to hear from the people who’ve been struggling with SIRVA long-term. I think people go searching on the web for info about SIRVA soon after getting it or soon after realizing it’s not going away anytime soon, and they find this webpage, but at that point we all know very little about our condition and trajectory and healing time, and we want to know more. Even bad news like your own is very important information. :’-(

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