Roundup of SIRVA-related news, Spring 2021

I realize there are a lot of new folks finding this website because of a mis-administered COVID-19 vaccine. To begin learning about shoulder injury related to vaccine administration (SIRVA), feel free to begin with the intro page here. My personal journey through SIRVA is written up in several posts and please also see the other guest blog posts to hear other stories.

This post is a look at new articles published about SIRVA in the last few months, both in the medical literature and in the news. This includes the first articles I’ve seen about SIRVA cases specifically from the COVID-19 vaccine. All of the journal articles get added to the collection on the Resources Page. As always, if I’ve missed anything, please let me know!!

SIRVA in the News

In great news, the Department of Health and Human Services decided to keep SIRVA as part of the National Vaccine Injury Compensation Program (VICP):

Legal Examiner: Shoulder Injuries to Remain Eligible for Vaccine Payment Program

An opinion piece in the a local paper from a SIRVA patient who advocates for getting your COVID-19 vaccination:

Northside SUN: Opinion: COVID Immunity Worth the Pain of Sore Shoulder

A news piece on SIRVA from the COVID vaccine:

CBS News: COVID Vaccine: Some Claim They Were Injured By Shots, But Experts Say There Is No Legal Recourse

An article about preventing SIRVA:

Pharmacy Times: Safeguard Patients During COVID-19 Immunization Campaigns

And another similar one about safe injection:

ISMP: Prevent shoulder injuries during COVID-19 vaccinations

New SIRVA Research

A few peer-reviewed articles came out this spring. Also, I was researching infections from vaccination (which may have happened to me), and which is not always described as SIRVA exactly, so there are a few older articles (which are new to me) about septic symptoms post-vaccination.

As always, most of these are behind a paywall. Usually I’m able to get access to these journals, but this time I couldn’t get all of them, so if you happen to have access and can send me pdf’s of the last two articles so I can keep my collection complete, that would be awesome!! The rest I have. And please see the Resources page for a lot more papers.

Cantarelli Rodrigues et al 2021: Subacromial-subdeltoid bursitis following COVID-19 vaccination: a case of shoulder injury related to vaccine administration (SIRVA)

Wong et al. 2021: Arthroscopic surgical management of shoulder secondary to shoulder injury related to vaccine administration (SIRVA): a case report

DeRogatis et al. 2018: Septic Shoulder Joint After Pneumococcal Vaccination Requiring Surgical Debridement

Darnley et al. 2019: Septic arthritis of the glenohumeral joint following influenza vaccination: case report and review of the literature

Walker 2021: You know where you can stick that … or do you? Where to inject the deltoid and why

COVID-19 Vaccines for SIRVA’d Folks

 

I have a few posts from past years worrying about getting the flu shot again after suffering a shoulder injury related to vaccine administration (SIRVA) from that vaccine in 2017. Fast-forward to 2021, and there is one question that just about everyone who ever got SIRVA in years past is asking: what is the best practice for getting my COVID-19 vaccine now?

I realize this post comes too late for many of you who’ve already gotten it (and any of you who got SIRVA from your COVID-19 vaccine—welcome, and I’m sorry you’re here in this boat), but I have been busy lately and also wanted to experience it firsthand before posting. Being in a late vaccination eligibility group, it took me this long.

I reached out to doctor friends and sent emails around, but no one was willing to “go on the record” about alternative injection sites for such a new and novel vaccine. The best help came from a Facebook group—you can find it by searching for the group “SIRVA – Shoulder Injury Related to Vaccine Administration”—where folks actively discussed this. Questions included:

  • “If I have an active case of SIRVA pain happening in one arm, should I get the shot in my good arm or the bad one?”
  • “Will vaccine administrators be willing to give me the shot in another part of the body?”

The discussion seemed to converge on asking the vaccine-giver to please use the injection site in your thigh. A member of the Facebook group posted these CDC documents for each of the US-approved vaccines, which definitively state that they may be given in the thigh (for each one, look on page 2 below the table):

Moderna – pdf

Pfizer – pdf

J&J – pdf

For example, for Moderna, the critical statement is highlighted in yellow, and a similar statement is found in each of the others: “Alternatively, the anterolateral thigh can be used.”

I would highly, highly, highly recommend printing out the one for your vaccine, bring it, show it, and explain why you would like to receive the vaccine in your thigh. I am not a doctor, so you definitely want to discuss with your health care practitioners whether the thigh site is recommended for you, by them. Some folks got notes from their primary care doctors. While I did not get a doctor’s note, I scheduled a telehealth appointment with my primary care doctor before the shot and we discussed it and she agreed that the thigh would be appropriate for the COVID-19 vaccine for me.

So far, folks are reporting that they have been able to get the shots there (including myself!!) but it may depend on who you get administering the vaccine. In some cases, people have said that a “supervisor’s approval” was needed, etc., so it took them longer.

For me, today, I got a very kind, sympathetic vaccine administrator who listened to my (brief version) explanation about getting SIRVA and was shocked (she’d never heard of it—sadly all too common), and had no problem jabbing me in the thigh. I hope those of you who ask for the thigh injection site also find a compassionate person who can confidently find the safe spot on the thigh.

Because I’ve learned a lot less about safe injection in the anterolateral thigh site, I had a PT friend who came over and he marked on me with a Sharpie both the deltoid site (looking for the “meat” or the “belly” of the deltoid and doing the classic inverted triangle seen, e.g., here and in the photo at the top of this page) and the thigh site, which is in the vastus lateralis muscle. My primary care doc had given me this document with information about the thigh (vastus lateralis) site, although it comes from dentistry sedation, not immunization. There are still some considerations for finding the right spot for injection in the vastus lateralis muscle, including:

  • “Overly deep penetration of the needle may strike the femur, resulting in discomfort and possible needle breakage”
  • Injections in the rectus femoris muscle (more on top of the thigh, if they miss doing it on the outer side of the thigh) may cause considerable discomfort

But, on the plus side, the thigh overall seems (???) to have less chance than the deltoid to screw things up. It’s certainly a whole lot bigger.

From https://pocketdentistry.com/10-intramuscular-sedation

 

If you can’t get the shot in your thigh, because the provider refuses or you have reason to be worried about that site (e.g., will the vaccine still work?), then I would personally still get the COVID-19 vaccine in my deltoid and I was mentally prepared for that possibility. So far, folks with SIRVA from other shots who got a properly administered COVID-19 vaccine in the arm have not come back to the group to report that they got SIRVA’d again. There is, hopefully, no “predisposition” to getting injured again that comes from getting a bad shot once. You just need to have someone who is competent enough to find the deltoid muscle. An actively raging SIRVA case may be different than a recovered one, and you may still consider getting it in your “good” arm. But I would personally ask for the thigh, myself, especially if I had a raging case with a lot of inflammation still going on in the shoulder.

Plus, after my thigh injection of the Pfizer vaccine today, my thigh is pretty sore. I would hate to have that pain in my arm and be wondering, until it subsides, if I’m screwed again. It would definitely have been a miserable reminder.

Please comment below if you have had SIRVA before and you have now gotten your COVID-19 vaccine, and what your experience was like! Best wishes to you all.

Roundup of SIRVA-related news, Winter 2020/21

Hi all, before I launch into the update, there is another urgent opportunity to please submit public comments, this time with a deadline in 2 days (2/16/21). This appears to be a different item in the Federal Register than the earlier one, so even if you have filled one out before, please do it again:

https://www.federalregister.gov/documents/2021/02/12/2021-03069/national-vaccine-injury-compensation-program-revisions-to-the-vaccine-injury-table-notice-of#open-comment

There is some older background information here. Here is a news article about the delay by the Biden Administration:

https://www.usatoday.com/story/news/health/2021/02/12/hhs-review-trump-administration-rule-halt-common-vaccine-injury-payments/6737200002/

And as usual, here is my round-up of new things I’ve seen or heard about Shoulder Injury Related to Vaccine Administration (SIRVA) in the past few months.

SIRVA in the News

It’s been a whirlwind for many of us as we watch (or receive, for the lucky folks) covid-19 vaccines being rapidly distributed. SIRVA has caught the attention of some reporters, particularly, as referenced above, the move by the former Trump Administration’s health secretary Alex Azar to remove SIRVA from the Vaccine Injury table. Here are some general news stories about it:

NBC News: A Day Before Resigning, HHS Secretary Makes it Harder for Vaccine Injuries to Get Compensation

USA Today: ‘The worst possible time’: HHS gives cold shoulder to victims of common vaccine injury

CBS News: Goldstein Investigates: Shoulder Injury Linked To COVID Vaccination From Medical Volunteers

New SIRVA Research

Seems like a quiet time; I have found only one new article about SIRVA in the peer-reviewed medical literature. For a complete list of all SIRVA papers, please see the Resources page. This one is a new set of SIRVA case studies:

Batra and Page, 2020: Shoulder Injury Related to Vaccine Administration: Case Series of an Emerging Occupational Health Concern

My Personal Update

The last time I posted about how things were going in my SIRVA journey was shortly after my second surgery on my shoulder. I’m now almost one year out from that surgery and I am doing great. My shoulder is 99.9% better and I’m still working on the last 0.1%, but I’m able to confidently rock climb again. I hope all of you still suffering will also find an end in sight and will regain all your old abilities with the shoulder. I would say, in total, it has taken me about 3 years to recover (Dec. 2017 – Dec. 2020). If you look through old blog posts you’ll see the whole journey.

Training to be able to climb again in my home gym, Nov. 2020.

Guest Post #2: Nicole

Welcome to the second guest post on Shoulder Injury Related to Vaccine Administration (SIRVA). Before sharing Nicole’s story, I have a couple of updates:

  • Please revisit this older post about the push to remove SIRVA from the Vaccine Injury Table – the move is now open for public comment and we need to hear your voices!!! Public comment on this very important issue for us is available until January 21, 2021. The rest of the post gives more information.
  • Dr. Bodor, who I’ve mentioned several times on this website (e.g., here), has a video about SIRVA and about a new treatment technique he has pioneered, and a brief write-up on his website. I’m very excited to hear more results from this treatment!!
  • Check out Ashley’s YouTube videos about her SIRVA experience.
  • There are two Facebook groups that I’m aware of that provide a place for discussion about SIRVA. One is called “SIRVA – Shoulder Injury Related to Vaccine Administration” and the other is called “I have Shoulder Injury Related to Vaccine Administration (SIRVA)”. Search for those names on Facebook to find and join them.

Below is Nicole’s post about her SIRVA experience, which includes a difficult case of frozen shoulder (adhesive capsulitis). Frozen shoulder happens in some percentage of SIRVA cases (I promise to go through the data soon and discuss more of the percentages and data). In her post, Nicole discusses some valuable information she learned from her physical therapist about treating the frozen shoulder, and more thoughts on her two-year journey.

-Amy


On a sunny fall afternoon in 2018, I stopped by a local pharmacy chain to get my annual flu shot. I figured it would be a quick in and out service and I would be on my way. I had been meaning to check out this cute pharmacy to see the gift items and knickknacks they were known for. The pharmacist was talkative with me and with her colleagues, and I felt at ease as she was getting the vaccine ready. She kept talking as she leaned over me, not paying a lot of attention to how she was lining up the needle with my arm. I thought about saying something, but thought that there was no risk associated with getting a flu shot, even if it was a little off center. She knew what she was doing, I trusted her. But I should have said something.

Picture taken 2 days after the injection, showing bruising at the location of the shot.

November 2020 marks two years since I had my injection and my arm is still not fully recovered. The injection I received that day has caused years of pain, limited arm movement, countless hours physical therapy, and limitations to my daily tasks. But the good news is that in the past year, things have gotten significantly better. That’s the message I want to share with you – it’s a long road, but it can get better.

Since starting physical therapy here in San Antonio, my arm has gone from 90 degrees of rotation to 160-165 degrees in a one-year timeframe. That’s the difference between being able to only reach things at shoulder height, to being able to put things on shelves above my head. My arm hurts less regularly, and I only experience numbness in my pinky and ring finger once or twice a week.

In the summer of 2019, I received a diagnosis of SIRVA and was lucky to be able to be matched up with a fellowship program at Brook Army Medical Center.  I learned that the primary issue I experience because of my SIRVA is adhesive capsulitis (also sometimes referred to as “frozen shoulder”), a tightening of the shoulder joint capsule which causes pain and muscle tightness. My therapist explained to me that my shoulder muscles created a cast to “protect” my arm which was immobilizing my joint and causing my pain.

My Physical Therapist focused his treatment plan on getting the muscles to relax and move little by little. I learned that if something hurt because I was pushing through pain to gain more movement during therapy, I could be prolonging my recovery. Instead of forcing a movement, I needed to ease up to avoid causing my muscles to continue to tighten up. I followed this idea at home too, movement is great – but if it causes severe or lasting pain, I needed to let up on my arm a bit.

In the fall of 2019, I was asked if I wanted to pursue surgery to quickly fix to my problem. But I try to avoid surgery as much as possible – it’s just not my jam. Instead I continued going to all of my appointments, dedicated the time for my home exercises (approx. 20 mins on a daily basis), and did my best to use my arm in daily tasks without aggravating it. I stayed active, doing exercises that didn’t seem to anger my arm like using the elliptical at the gym.  Even my husband was enrolled in helping me with stretching and moving my joint at times.

Little by little I started seeing gains. By December, I could wash my hair comfortably; by February I was able to reach my bra hooks behind my back. As I gained more motion, my therapist and I could feel the adhesions breaking during therapy sessions. I was seeing progress which kept me motivated to continue stretching every day. Spending time stretching each day has become an investment in myself. My joint feels better, I am able to be more self-sufficient, and I am in less pain.

This August (2020), I was released from my physical therapy sessions. Now I am working independently on my own with a set of stretches to keep increasing the range of motion in my arm. Instead of my daily stretches, I am trying to identify what my minimum stretching requirement is to keep my arm feeling happy. If my arm gets bad again, I can always check back in for more assistance from physical therapy. I am finally able to reach things on high shelves, carry things using my left arm on its own, and even sleep on my left side at night. Most of the things around the house can be done on my own without aggravating my arm.

Thinking back on the past two years, here are my take-aways from my experience:

  1. Advocate for yourself: If you are getting another vaccination – make sure the person is placing it correctly. Use the resources that Amy has provided on this SIRVA Blog to educate others and to protect yourself. If your arm is not better after your Physical Therapy has ended, ask for more.
  2. Don’t push through the pain: If it hurts bad, you could be causing your arm to freeze up more. My Physical Therapist advised me that discomfort is ok as long as it goes away once you move out of the position or movement. But if the pain lingers, lighten up on the intensity of the exercise or movement. It will take a long time to get your muscles to relax, but they won’t relax if you cause them pain.
  3. Do your exercises diligently: It’s an investment in yourself – literally! Stretch while watching your favorite TV show, listening to a podcast, or listening to music. Find a way to create relaxing time for yourself while you do your stretches/exercises. Bring your PT bands (or other equipment) with you when you travel. Fit the work in – even if you cannot do it all on a particular day, fit some of it in. I believe that the long-term commitment to consistent stretching on my own has helped me make such great progress this year.
  4. Embrace the long path you are on: After my SIRVA and Adhesive Capsulitis diagnosis in the summer of 2019 I was told that it would take 1-2 more years for my arm to get better. I was already 10 months post injury at that time – so that’s a total of 3 years to heal. It is exhausting to think about, but by dedicating myself to doing my exercises I have seen progress and that has kept me focused on the long-term goal.

I know that I still have another year or more ahead of me to get my full range of motion back. Honestly, I may never get to 180 degrees of movement, but I am going to keep making progress in that direction. Recently I tried swimming, and some day 1-2 years from now perhaps, I will be able to go whitewater rafting again. Even if that doesn’t happen, I am in a much better place today than I was a year ago thanks to my Physical Therapist and to the work I have put into my arm. I hope this update inspired you to keep your eyes on the long-term goals and to do the little daily things that will help you get there.

Nicole (middle of the raft, with blue shirt on) before her SIRVA injury.

Guest post #1: Laura

Hello everyone; I hope you are doing okay during this particularly difficult time. I am guessing that for some folks COVID-19 has interfered with getting treatment for your shoulders, and I’m also sure that all the discussion about a coronavirus vaccine is causing us some anxiety. We don’t know much about how folks with a prior Shoulder Injury Related to Vaccine Administration (SIRVA) react to future vaccines that are administered correctly, but in Laura’s story below, you will read about her experience.

I’m inviting anyone who is at least a few years into their SIRVA experience to please contact me if you would like to post your story. My story is in a long, drawn-out equilibrium; better, but not all the way better. Since that’s boring to talk about, I would like to continue to post with your stories and experiences in the hopes that it will help others with similar symptoms. The first “guest post” is by Laura. Thank you, Laura!

-Amy


Hello! I am adding my SIRVA story to Amy’s with the hope that it will be helpful to others out there who are hungry for information or (at the very least), reassurance that you are not alone.

I am a healthy, active 60 year old woman who had a shingles (Shingrix) vaccination in my left arm in August 2018. The pharmacist who delivered the shot noted that I am slim and used a shorter (5/8”) needle. I’m pretty sure I rolled my sleeve up (rather than down from the neck) and the injection itself didn’t hurt.

The expected fatigue and left arm pain showed up the next day (Shingrix is known for significant arm pain that should last a couple of days). Though the fatigue quickly resolved, the achy arm did not. Two weeks later, it had spread to my elbow, wrist and hand. During that time, I turned to Google and (of course!) landed on the many articles posted by law firms with the title VACCINATION INJURY. I recall reading about SIRVA but, as I didn’t feel the needle itself had injured me, I (mistakenly) didn’t think it fit my situation. My focus, at that time, was more on conditions such as brachial neuritis and Parsonage Turner Syndrome. When I reported the persistent pain to my pharmacist, she informed me (rather bluntly) that vaccinations can trigger autoimmune diseases such as rheumatoid arthritis (RA). Needless to say, this fueled anxiety!

By week 3, I had stiffness and tingling in both hands and similar (but less) pain in my right arm. I went to my doctor who prescribed a week of heavy-duty ibuprofen and ordered blood work and a nerve conduction study. The ibuprofen did nothing and both tests yielded normal results (no markers for RA nor elevation of C-Reactive Protein). She guessed that my immunity to shingles was already robust and that my system over reacted. (Side note, I had a mild case of shingles 12 years ago). She predicted my symptoms would resolve in a few weeks or months.

But they didn’t. And my anxiety ramped up which, of course, made things worse. By month 5, I had an ultrasound and X-ray on my left shoulder and elbow which showed subacromial/subdeltoid bursitis, subscapularis partial-thickness tear and supraspinatus tendinosis and thickness tear. My doctor did not necessarily think these results were connected to the vaccination and suggested physio. I did a relatively short run of Active Release and Graston (two types of physiotherapy), also, acupuncture and massage – but with no results. I feel better when exercising and have made a point of continuing with my usual activities such as brisk walks, yoga, ice hockey and badminton – luckily, I am right handed so the pain doesn’t interfere too much. Though my arm can feel a little worse the day after yoga, I think it has helped me to maintain strength and range of motion – though I’m never entirely sure that I’m not causing more damage nor preventing it from healing. (I’d love to have a clone of myself doing complete rest while I continue with activity so I can know which path is better!)

By month 6, I was delving into the fascinating world of Mind/Body pain theory and mechanisms of ‘central sensitization’ (Lorimer Moseley, David Butler, Dr. Sarno and many others). I became convinced….almost….that I had no actual tissue damage and that fear and anxiety of vaccine injury had sent my nervous system into overdrive causing my brain to transmit errant pain signals. In particular, I have been interested to read about the role of the immune system (specifically glial cells) in chronic pain conditions such as fibromyalgia and wondered if there was a link with the vaccine. I tried meditating, journaling and Qi Jong with hopes of calming my system.

One year in, things were pretty much the same. While I felt much calmer, my pain persisted and I had to concede that I couldn’t quite shake the belief that the vaccination has caused an insidious and undetectable immune response that was wreaking havoc on my tendons! Which brought me back to SIRVA. Discovering Amy’s excellent website and reading more about the nature of vaccine induced injuries has convinced me that this IS what I’m dealing with.

And then, by month 15 my symptoms finally seemed to ease and, taking a great (and foolish!) leap of faith, I got a flu shot (definitely with a short needle and in the right place). The arm pain re-emerged the following day and, within a week, it again had spread to my shoulder, elbow, and wrist…(damn!).

Regarding the issue of SIRVA being caused by misplaced needles, Dr. Sofia Szari, co-author of this paper, has this to say: “in my case that was published I believed [the needle was injected in] the proper location based on the description.  I can’t fully explain why it happens in those circumstances other than that the local immune response is robust and for some reason the immune cells in the nearby shoulder get revved up as well to fight off the ‘foreign invader’ of the vaccine, but in their inflamed state, the shoulder is the innocent bystander.”

So, armed with papers recommended by Amy, I visited my doctor again. She is somewhat skeptical about SIRVA but ordered a second ultrasound which revealed bursitis (the rotator cuff tears looked better). In January 2020 (about 18 months post-vaccination), I received a shot of cortisone into the bursa which gave me two glorious pain-free months. I also experienced a weird ongoing sense of jitteriness kind of like an adrenaline rush –  which wasn’t pleasant. In any case, the pain came back, almost as quickly as it went away (i.e. overnight). I doubt I’ll get another.

Since then, things are about the same or a little worse. I seem to be experiencing more muscle pain and general shoulder tightness which is now particularly bad in the neck. I’m assuming it’s compensatory but it may be that I’ve been overdoing things. I’ve also resumed physio which has helped with some of the muscle tightness but it’s not making a whole lot of difference to that deep shoulder pain – which is so exasperating.

Two years in, I am now (like so many) wondering where to turn next? It seems clear that SIRVA is different from ‘normal’ injuries in that there is an ongoing inflammatory response at play. My #1 question is – is the inflammation (and resulting tissue damage) progressive, or will it diminish with time?

Roundup of SIRVA-related news, Summer 2020

Hi all. Welcome to the Summer 2020 roundup of the latest news, articles, and information about Shoulder Injury Related to Vaccine Administration (SIRVA). I hope everyone is making it through this trying time.

I have seen several articles recently about coronavirus and the immune system, with speculation about why women are getting hit less hard than men. They invoke something which I have seen before, which is the evidence suggesting that women’s immune systems on average mount a more vigorous defense to invaders than men’s. (This is also suggested as one of several reasons that autoimmune disease is much more common in women.) I wonder if it is also part of the effect that SIRVA happens more frequently to women than men, in addition to the smaller average shoulder, arm, and deltoid size. It’s speculation, but interesting, and I’m seeing it in the news lately with respect to covid-19.

Anyway, on to SIRVA-related news:


New SIRVA Research

This comes from a nontraditional medical journal, but I’m including it for completeness:

[pdf] Veera et al. 2020, “Use of Osteopathic Manipulation for Treatment of Chronic Shoulder Injury Related to Vaccine Administration”

This article is a data analysis of the frequency of subdeltoid bursitis following flu vaccination (one particularly common SIRVA injury). Their finding is that there are 7.78 additional cases of bursitis per 1 million persons vaccinated, although this relies on reported cases of SIRVA where some cases may still go unrecognized or incorrectly diagnosed:

Hesse et al. 2020, “Risk for Subdeltoid Bursitis After Influenza Vaccination”

And related editorial:

Fryhofer and Fryhofer 2020, “Vaccination-Induced Bursitis: Technique Matters”

Both of the preceding two articles are behind a paywall other than their summaries, but let me know if you would like a copy.


This article was (to me) a fascinating read that intersects the vaccine court, the flu vaccine, and coronavirus misinformation: “The Star of ‘Plandemic’ Spent Years Flooding the Vaccine Court System with Bad Science“.

Here’s an article (pdf) out of Victoria, Australia, that briefly mentions SIRVA. It says that because SIRVA cases were perceived to increase in 2018, their Advisory Committee on Vaccines was alerted and new resources were developed, including a “national educational initiative on correct injection technique”. Sounds like an appropriate response!

This educational research article (pdf) is not related to why SIRVA happens or how to treat it, but I enjoyed reading about training pharmacists to safely administer vaccines (and avoid SIRVA) using an “augmented reality” (Microsoft Hololens) simulation, among other techniques (like learning on a mannequin). Because the place to stop SIRVA from happening is in training the people who give vaccines, I’m always interested in what programs are doing to step up their game.

2.5 year SIRVA update

How are you all doing? I’d like to start publishing some of your shoulder injury related to vaccine administration (SIRVA) stories because I think mine is getting boring: better! worse. better! worse. better…? Please email me if would like to write a post for this website. My preference is that you be at least 1-2 years out from the shot so that your post can cover more of the arc of your whole experience rather than the initial symptoms (which are horrible).

An update on my progress has been a long time coming because I was in a deep regression (details below), and honestly, it depressed me too much to write about it during that time. But I am on the upswing and in a better mood lately. Here:

Recovery Mistakes

I wrote here about what caused me to go backwards rather than keep improving after surgery in July 2018. To clear, the original surgery (debridement, bursectomy, irrigation, PRP) was a success, I think, and I was recovering very nicely and climbing again in the spring of 2019. Rehab mistakes and doing something stupid (carrying something too heavy than my shoulder was ready for) is what set me back an entire year. Don’t do that.

After reinjuring my SIRVA’d shoulder I tried to rehab with PT and it was going nowhere. I went on a long-planned trip to Spain and Sardinia and only climbed stuff that was relatively easy for me.

Eventually it seemed clear that a second surgery on my SIRVA’d shoulder was the likely correct choice. This surgery was different. It was a biceps tenodesis (which some of you might also end up with during a SIRVA surgery, depending on what the doctor finds in your shoulder; it’s a common procedure). I asked the surgeon to look for signs of SIRVA related damage and he reported that things looked good around the bursa and likely site of SIRVA injury where the teres minor attaches to the humeral head.

Before surgery I also spoke with Dr. Bodor in California and he offered a second opinion, which is that it was possible that the regression/reinjury was still more related to the primary SIRVA damage, and that a second surgery might not be addressing the right cause. He could be right (I don’t know yet) and if I lived closer to California I would probably have gone to see him as he is trying a less invasive treatment on SIRVA shoulders (will say more later). If you are anywhere near northern California, please consider seeing Dr. Bodor, I think he is extraordinary; he was the first to publish a paper in the medical literature on SIRVA, and he continues to publish on it and has a deep interest in helping SIRVA patients recover.

My surgery was February 20, 2020. In-person postsurgical physical therapy was interrupted by Covid-19, but nonetheless my recovery is going extremely well (KNOCK ON WOOD). I do my PT at home while FaceTiming with the therapist:

Tomorrow will be four months post-surgery. In the next few months I will know if the surgery was successful, or if lingering SIRVA damage continues.

My next post is going to cover my experience with the VICP and legal aspects of a SIRVA injury.

Roundup of SIRVA-related news, Spring 2020

Welcome to the Spring roundup of the latest news, articles, and information about Shoulder Injury Related to Vaccine Administration (SIRVA). It has been a busy quarter.

Update: The proposed change to the Vaccine Injury Table is now up for public comment at regulations.gov (July 20, 2020 – January 21, 2021). Please read the post(s) below for background information, and then go to: https://www.regulations.gov/document?D=HRSA-2020-0002-0001 to submit a public comment. This is so important for everyone to comment on! THANK YOU!

First, if you saw my last post or heard elsewhere about the proposed action by the Department of Health and Human Services (HHS) to remove SIRVA from the Vaccine Injury Table [pdf], the committee tasked with reviewing changes to the Table held a public meeting on May 18, 2020 to discuss the HHS proposal. Information and presentation materials from the meeting are posted here. I gave a 10-minute presentation during the public comment period that included my own SIRVA story and some results from the SIRVA Survey (aka “the Sirvey”), and hoped to explain why it means that I oppose the removal of SIRVA from the Vaccine Injury Table. However, the allotted 10 minutes went by fast and I ran out of time! In any case, my presentation materials are here [pdf] if you want to see them.

The comments at the meeting were overwhelmingly in opposition to the proposed change to remove SIRVA from the table, and at the end of the the meeting, after debate among the committee members, the four members present unanimously voted “no” for their recommendation on the proposed change. Their reasons for voting “no” varied, but the outcome is great news. The HHS does not have to abide by the committee’s recommendation, and could still act in defiance of the recommendation to remove SIRVA from the table, but according to Leah Durant, PLLC, they have never previously done so.

In case you missed it, NBC4 Washington had good coverage of the issue before the meeting (here), and after (here).


New SIRVA Research

Two SIRVA case studies with teres minor tendon injury (similar to my own injury):
Natanzi et al. 2020, Teres minor injury related to vaccine administration

This isn’t new, but the first time I’ve seen it:
Neat video interview with an MD in front of her research poster on a SIRVA case

This isn’t about SIRVA specifically, but trials on an influenza vaccine patch are promising and, as mentioned by Dr. Cody Meissner during the public meeting described above, could go a long way towards drastically reducing SIRVA cases (~75% of which are from flu shots, according to the Sirvey):
Thompson et al. 2020, An opportunity to incentivize innovation to increase vaccine safety in the United States by improving vaccine delivery using vaccine patches

Fairly unrelated, but in a paper about a Canadian study regarding training pharmacists using computer-based education, it mentions a “SIRVA module” in the training, which is great:
[pdf] Grindrod et al. 2020, Assessing Performance and Engagement on a Computer-Based Education Platform for Pharmacy Practice


That’s all I’ve found for Spring 2020 SIRVA news. Please let me know if you have anything else!

URGENT! Please read

Call to Action

Update AGAIN: The new place to provide public comment by January 16, 2021 is here: https://www.federalregister.gov/documents/2021/02/12/2021-03069/national-vaccine-injury-compensation-program-revisions-to-the-vaccine-injury-table-notice-of#open-comment

The ACCV voted not to remove SIRVA from the Vaccine Injury Table!! Original post below. There is no need to contact the members of the ACCV any longer, BUT PLEASE SUBMIT YOUR PUBLIC COMMENT before January 21, 2021 by following the link above. There is an update about the ACCV meeting here. 

There is a proposed change at the U.S. Department of Health and Human Services (HHS) that will hurt the ability of American sufferers of Shoulder Injury Related to Vaccine Administration (SIRVA) to be compensated. The change will take SIRVA off the Vaccine Injury Table. (Watch an NBC News update on this here.)

Since the people who give the shots incorrectly are not liable for the injuries they have caused, due to federal vaccine law, the Vaccine Injury Compensation Program (VICP) is currently the way to get reimbursed for expenses, pain, and suffering.

I have heard from so many of you with devastating financial hardships as a result of SIRVA. For some, it’s being unable to work at your job; for others, it’s bad medical insurance that means high costs for treatments, or traveling far from home to find a doctor who has even heard of SIRVA. For me, I estimate I’ve lost about $20,000 in out of pocket expenses at this point, and I’m still not completely better, 2.5 years later. The VICP is a lifeline here in the U.S. for the (slow) process of getting fair compensation for our costs and suffering.

Please read the information below from Leah Durant, PLLC, and if you can, take the time to make your voice heard! While Leah says this will not affect cases that are already in progress, we owe it to all future recipients of SIRVA to take action immediately to stop this change.


Letter from Leah Durant:

I am writing today to inform you of a crisis within the Vaccine Injury Compensation Program and I need your help, and your voice, today.

On March 6, 2020, at a meeting of the National Advisory Commission on Childhood Vaccines, representatives of the Secretary of Health and Human Services (HHS), unveiled a plan to REMOVE ALL SIRVA CLAIMS from coverage under the Vaccine Program. While attorneys like myself and others have been working extraordinarily hard to get the best results for each and every one of our clients, bureaucrats at the Department of Health and Human Services and lawyers at the Department of Justice have been feverishly working behind closed doors to ram through a regulatory change to do away with SIRVA claims altogether. Their plan is to have this change implemented very quickly and quietly, before too many people know about it.

Because HHS is unable to keep up with the number of SIRVA cases that have been filed, their proposed solution is to eliminate SIRVA altogether, thereby depriving people like you of your right to recover for severe shoulder injuries that result after vaccines.

Government officials know that SIRVA occurs frequently and the science behind it is sound. However, rather than working with the CDC to train administrators on how to administer shots correctly, HHS’s “solution” is to remove SIRVA from the Vaccine Program altogether, taking away your right to receive compensation under the Program.

HHS’s plan of action is appalling. The worst part is that they are doing everything within their power to make sure no one is aware of the change, and have unleashed this proposal at a time when the entire world is grappling with a public health crisis. Low-level bureaucrats at HHS want to make their lives easier by eliminating your right to gain compensation for shoulder pain that occurred as a result of someone else’s mistake.

Also telling is that HHS has revealed this plan late on a Friday afternoon, just when the coronavirus crisis is of critical concern and all the high-level officials at HHS have directed their attention to this national emergency. The Commission chairman would not even allow any discussion at the meeting on HHS’s plan. HHS is required by law to allow for a public comment period of 180-days; however, in an effort to make this change at “warp speed,” HHS is refusing to provide any additional information so that the public can know what is going on.

Below are the action items you can do now:

There are things you can do right now, and all week long – until our next meeting, to help the effort to stop HHS from adopting the proposed Rule.

  1. On the HHS organization chart, the Vaccine Injury Compensation Program falls under the umbrella of a particular Division, the Health Resources and Services Administration (HRSA). It is vitally important that HRSA’s Administrator, and his two Deputy Administrators, are barraged with letters, emails, and phone callsopposing the change.  The Administrator at HRSA, Mr. Thomas Engels, is the newly appointed HRSA Administrator (appointed in late November 2019), and I believe Dr. Engels has no idea what is happening in his Division to secretly push this plan through. Your assignment for this week (further assignments coming each week) is to please write letters and send emails to Mr. Engels (from Wisconsin) and his deputies, Brian LeClair (from Minnesota) and Diana Espinosa and let them know how you feel. 

Harness the energy that you expressed in Friday’s call and let them know how SIRVA has affected you and why you want all Americans to have the legal recourse you had. Get your friends and family to email and write letters too. We want the snail mail and email boxes of these three people to overflow with our outreach!

And please also do the same for the Secretary himself. All 4 of these HHS officials are vital for us to contact and only Secretary Azar and Administrator Engels probably have the power to turn this thing around at this point. 

The phone number for all three of these HRSA Administrators is:  301-443-2216

Dr. Thomas J. Engels
HRSA Administrator
5600 Fishers Lane
Rockville, MD 20857
tengels@hrsa.gov

Mr. Brian LeClair
HRSA Deputy Administrator
5600 Fishers Lane
Rockville, MD 20857
bleclair@hrsa.gov

Ms. Diana Espinosa
HRSA Deputy Administrator
5600 Fishers Lane
Rockville, MD 20857
despinosa@hrsa.gov

The contact information for Secretary Azar, the very top person at HHS, is as follows:

Alex M. Azar II
Secretary of Health and Human Services
Office of the Secretary
330 C Street, SW
Washington, D.C. 20416
Secretary@HHS.gov

Phone Number: 202-690-7000

  1. Please also write the Chair of the Vaccine Commission with your opposition:

Cody H. Meissner, M.D.
750 Washington St # 213
Boston, MA 02111

  1. If you are interested in FB and in organizing by state, please contact me [Leah Durant] directly. In this regard, as mentioned above, any of you from Wisconsin or Minnesota that know Brian LeClair (former Minnesota State Senator) or Dr. Thomas Engels (former Assistant Deputy Secretary at the Wisconsin Department of Safety and Professional Services and Vice President of Public Affairs at the Pharmacy Society of Wisconsin) please let me know.

4. Written below are several talking points for your emails and letters to Secretary Azar, Mr. Engels, Mr. LeClair, Ms. Espinosa, and Dr. Meissner.

Feel free to say whatever you’d like, however, please note that all emails and calls will be most effective if they come directly from you. Thus, in order to have their greatest impact, calls and emails should avoid mention of me [Leah Durant], or my firm.

Just let them know that you do not want SIRVA removed because it is a serious and debilitating injury. Tell them what SIRVA has done to you and that you do not want others to be deprived of a path to recover. Tell them that this injury may well affect you and those you love for many decades to come.  Please don’t get into the specific details of your case – just that you suffer from SIRVA, that it has altered your life negatively, and that you strongly disapprove of HRSA’s efforts to remove SIRVA from the Vaccine Injury Table because it runs contrary to our nation’s health policy to encourage people to get vaccinations.

HHS’s proposed Rule is not in the interest of the nation’s health policy – we should be encouraging people to get vaccinated, not raising doubts about the safety and efficacy of vaccines. In addition, tell them that you plan to begin contacting your Members of Congress, and you resent that this change is being made in secret and behind closed doors.

######

Thank you all so much for all you are doing. Although HHS is trying to do this without discussion, let’s bring some SUNSHINE to the issue. #SunshineonHHS!

With my best personal regards for your continued safety and health,

Leah V. Durant
Principal and Owner
Law Offices of Leah V. Durant, PLLC
Ldurant@Durantllc.com


Additional Information:

Science magazine article about this proposed change

Open letter from Johns Hopkins shoulder surgeon Dr. Srikumaran [pdf link]

Text of proposed rule [pdf link]

Yahoo Finance article

NBC News video on the change

Roundup of SIRVA-related news, Winter 2020

I’ll be posting news and updates about Shoulder Injury Related to Vaccine Administration (SIRVA) research seasonally. If there are any exceptionally good/important new articles or information out there I will be sure to call your attention to it. Please email me or post in the comments if you find something I’ve missed! The Resources page has older articles, including many classics that explain and describe Shoulder Injury Related to Vaccine Administration (SIRVA), so please check there for more information if you are just getting started.

I think the most interesting new article from this season is the one listed first below under Medical Literature. In this study, doctors had the opportunity to treat two SIRVA sufferers within 5 days of their shots. (Most folks wait a bit longer than that to realize that something was unusual about their shot. I saw advice out there to wait “two weeks” to see if the pain subsides before being certain that something actually went wrong.)

In this paper, the authors (Macomb and others) describe giving the two SIRVA patients steroid injections very soon after they reported having gotten SIRVA from a shot. The first patient received the steroid injection 4 days after the vaccine and the second at 5 days. In both cases, neither developed persistent SIRVA, as both were found to be pain-free at follow-up appointments a month later.

This certainly begs the question of whether the corticosteroid injections prevented the two patients from developing SIRVA, or whether they were among the luckier folks anyway who would not have had persistent, chronic pain. It would be great to see this study continued, but with a control group (no corticosteroids) and an experimental group. It would be even more interesting to see it double-blinded (placebo steroid injections?) and of course to cover a larger number of patients, but it seems very hard to get and recruit SIRVA patients within 5 days of the onset of injury! In any case, it is neat that the authors tried this approach and found that neither patient had a bad case of SIRVA develop. If you happen to be within that very early window post-extra-painful-vaccine shot, you might show a doctor this paper. (I have also heard advice to not get a steroid shot from a general practitioner but opt for an orthopedist or other specialist to give it, for better accuracy in the shoulder joint. I don’t know if that’s good advice or not. As always please discuss everything with your doctors.)

General Articles

I didn’t see any particularly noteworthy new general news articles about SIRVA in the past few months (late 2019, early 2020).

New Medical Literature

Some of these are behind a paywall, but the abstracts provide a taste of what they’re about. Email me if you want more information about any of the access-restricted articles. All of these are also added to the Resources page.

Macomb et al., 2020: “Treating SIRVA Early With Corticosteroid Injections: A Case Series”

Hibbs et al., 2020: “Reports of atypical shoulder pain and dysfunction following inactivated influenza vaccine, Vaccine Adverse Event Reporting System (VAERS), 2010–2017”

[PDF] Farford, 2020: “Case Report”

Bansal and Di Lorenzo, 2020: “Septic arthritis of the glenohumeral joint following influenza vaccination: case report and review of the literature”

Thompson et al. 2020: “Performance of the United States Vaccine Injury Compensation Program (VICP): 1988–2019”

Hesse et al. 2020: “Shoulder Injury Related to Vaccine Administration (SIRVA): Petitioner claims to the National Vaccine Injury Compensation Program, 2010–2016”

[PDF] Davidson and Bertram, 2019: “Best practice for deltoid intramuscular injections in older adults: Study in cadavers”