Bone damage from SIRVA

In several of the case studies in the literature, a shoulder injury related to vaccine administration (SIRVA) caused clear changes to the person’s bone marrow of the humeral head. It goes by several names and comes in different forms that you may hear from your doctor or on your MRI report:

  • Bone marrow lesion (BML)
  • Subcortical or bone marrow edema (or “oedema”)
  • Osteitis
  • Intraosseous edema
  • Humeral head osteolysis
  • Atraumatic osteonecrosis
  • Marrow contusion
  • Cystic changes

When an MRI is taken very soon after the incident, it may not be apparent yet. In my case, I had an MRI at 1 month and a repeat MRI at 6 months. The radiologist didn’t catch it on the 1 month MRI because the changes were too subtle at that time, while the 6 month MRI showed it strongly and the radiologist went back and could see it on the first MRI and indicated that it had progressed. Also, the hint of a bone defect was observed on ultrasound about halfway between the two. Make sure you advocate for yourself to get a follow-up MRI to understand whether longer-term changes have taken place. I wasn’t originally going to get a second MRI, but I saw another doctor for another opinion and he ordered it.

While bone marrow edema is common in some parts of the body (like knees), it is rare in the humeral head and is usually associated with some kind of trauma: “Marrow edema in the greater tuberosity is an infrequent finding” (McCauley et al. 2000). It also shows up in conditions like rheumatoid arthritis, as edema or BMLs “constitute a central component of a wide variety of inflammatory and non-inflammatory rheumatologic conditions affecting the musculoskeletal system…[they are] considered significant sources of pain” (Eriksen 2015). It may also be caused by infection.

When there is no history of a blow to the shoulder or systemic arthritic condition, it seems to me like a clear smoking gun for SIRVA, and it shows up in many SIRVA cases (see below). Is there any good news about this? Maybe: “all findings are in line with the notion that BMLs represent repair phenomena, elicited by inflammatory or non-inflammatory trauma to the bone” (Eriksen 2015).

Once I found out I also had these classic bone damages from SIRVA, I started digging into the research and trying to understand what can be done about this particular component of SIRVA. Spoiler: I wish I knew the answer, but I’ll tell you what I have learned.

What can be done?

I asked the doctors I’ve seen what they think could be done for it. I also asked if they know, because I am curious, if the pain is coming more from the soft tissue or from the bone. (“It is possible that it is from the bone but there is no way to predict what percentage of the pain is coming from the bone vs the bursa.”)

Surgical intervention: 

“Surgical debridement of the cystic areas and resurfacing of the humeral head yielded a good outcome. … The area of lateral humeral head osteolysis was treated with thorough debridement and irrigation. …. Bone grafting of the greater tuberosity was not undertaken because the defect would probably resolve with time following the initial debridement.” —Messerschmitt et al., Orthopedics 2012

“There isn’t really a good option surgically for inflammatory/immune mediated bone damage, microfracture can sometimes help but there is limited research on this that shows it to be effective.” –One of my doctors (by email)

Surgical drilling of holes in the area of BML formation to relieve pressure was introduced as one of the earliest interventions to reduce pain and increase function in [osteoarthritis]…Core decompressions followed by injection of autologous bone marrow stem cells have been introduced for the treatment of osteonecrosis of the hip…and also intravenous administration of autologous and allogenic stem cells has been tried. Complications to these extensive procedures have been reported as minimal, but the results, however, vary” (Eriksen 2015).

Medication:

“With an increased dosage of ibuprofen (2400 mg per day), the addition of peroral bisphosphonates (70 mg once a week), daily peroral calcium (1000 mg) and vitamin D3 (800 IU), and 6 weeks of manual therapy and massage (6 sessions per week), her resting pain completely remitted. … Pain on exertion subsequently declined within the next 6 months. The intake of all medication was ended in August 2010 (i.e., 9 months after onset). The last clinical examination, 11 months after vaccination, revealed an improved range of motion in the left shoulder ….  MRI scans 12 months after vaccination of the left shoulder showed a slight reduction of the necrosis area with signs of regeneration in the necrotic region. The patient experienced some pain after strong exertion in the arms, so she was advised to further reduce strenuous arm and shoulder activation and to avoid overhead activities.” —Kuether et al., Vaccine 2011

Bisphosphonates reduce pain, extension of BMLs and improve functional outcomes in benign conditions like osteonecrosis, regional transient osteoporosis, enthesopathy in spondyloarthritis and regional pain syndromes. Most of the studies have been open label or interventional, but for osteonecrosis and regional pain syndrome significant effects have been demonstrated in randomised prospective trials. In several intervention studies, positive effects on pain have also been reported in local transient osteoporosis, stress fractures and various BML syndromes in athletes. One randomised placebo-controlled study on effects of the bisphosphonate Ibandronate on BMLs in the knee, did not, however, demonstrate significant effects” (Eriksen 2015).

Other:

“Bone stimulators might help this but it is something you would have to pay out of pocket for.” –One of my doctors

“In extracorporal shock wave therapy, a mechanical shock of defined magnitude is delivered to the area with BML. The technique has mainly been used for the treatment of plantar fasciitis, but effects on BML at the hip have also been reported with significant pain relief and functional improvement of the hip and reduction in BME. Proponents of this method claim that the mechanical shocks improve blood flow in the area, thereby reducing or alleviating BMLs. The shocks could, however, also increase microdamage in the area, which—if BML signifies bone repair—is counterintuitive” (Eriksen 2015).

One of my doctors saw a flyer for this and recommended it to me, as a provider had just opened up in my area: Osteostrong. It’s not cheap, but they start with at least one free session, so you can learn about their program. A well-known premise (from what I can tell) is that weight-bearing or loading of bones above and beyond the normal daily loading can reverse bad changes in bone density. You may be able to use this information to figure out your own way of applying a load onto the humerus, e.g., doing planks. I also tried biking, which puts a load onto outstretched arms.

What is the evidence that it happens due to SIRVA?

While spontaneous bone marrow edemas are rare in the shoulder (humerus bone), they are very common in SIRVA cases. For example, in Taylor and Hinke, 2014 (red arrow added by me to point out the bone edema, among the other things happening on this MRI):

Is one example not convincing enough? Here’s more, from Kuether et al., 2011. In this case, you’ll notice the image is the “opposite” in color, with the bone appearing light and the edema appearing as a menacing dark circle pointed out by a white arrow (which I didn’t add):

Back to the ones with dark bone and light color (“hyperintensity”) for the bone marrow edema, here is Okur et al., 2014, and I also didn’t add the red arrows this time although I highlighted in the caption:

Need more convincing? How about another? This is from Salmon et al., 2015; red arrows mine, sorry if the caption is too small to read:

Back to my MRI, since we’re all now amateur radiologists: in each case below, the left MRI was taken at 1 month and the right one at 6 months. See the bright white edema in the bone, as in each of the examples above?

This is a slice through my shoulder horizontally, picture me laying on my back with my back to the bottom of the image. At one month the sign of edema is very small and subtle, but at 6 months it is raging:

Here is another, this one a slice vertically through the shoulder, closer to my back (“posterior”) than my front:

On each image, this is one slice further into my body than the previous one, i.e., one step closer towards my front (“anterior”):

If you’re curious about what the REAL radiologist said about this, the report reads:

Again noted is a marrow contusion within the posterior and lateral mid inferior humeral head metaphysis. This is slightly lower than expected for anterior dislocation relocation injury but could still be related to dislocation. This has developed since the prior examination. Impression: Marrow edema within the posterior lateral proximal humerus could be related to prior dislocation or direct blow injury.

The radiologist keeps bringing up a dislocation or direct blow injury to suggest alternatives to SIRVA, particularly because I didn’t mention the flu shot on the intake form for the MRI. But I can assure all of you that I didn’t have a direct blow injury to THIS shoulder, ever (the other shoulder is another story) and certainly NOT in between 1 and 6 months after the flu shot, which is when it blossoms from nearly nothing to something. So, direct blow injury or dislocation is not what happened. SIRVA happened, as I hope you can see from the evidence above.

Here are links to full journal articles the SIRVA cases where there is bone damage (some are pdfs; some are behind a paywall, but you get the idea):

Kuether et al., 2011: “Atraumatic osteonecrosis of the humeral head after influenza A-(H1N1) v-2009 vaccination”

[pdf] Messerschmitt et al., 2012: “Progressive osteolysis and surface chondrolysis of the proximal humerus following influenza vaccination”

Salmon et al., 2015: “Bone erosion and subacromial bursitis caused by diphtheria–tetanus–poliomyelitis vaccine”

Taylor and Hinke, 2014: “Radiological Case: Shoulder injury related to vaccine administration”

[pdf] Okur et al., 2014: “Magnetic resonance imaging of abnormal shoulder pain following influenza vaccination”

What else is there to say?

When I found out about these bone marrow changes I was horrified about it. While alone at home I yelled, cried, raged. For some reason I could handle the “soft tissue” changes in stride, but knowing this improperly administered vaccine had damaged the very bone itself was more than I could bear. But the more I read, the more I learned that bone damage can be reversed. It’s not permanent either. Look at how broken bones can be healed stronger than ever before. It seems like the same is true for SIRVA-related bone damage, but time will tell for many of us.

 

It’s worth a try, Part 2: the mental side

As part of my research on methods to improve immune response through simple and free means, I was shocked to come across research in peer-reviewed medical journals about the effect of meditation on the immune system, specifically an article that talked about the effect on flu vaccine antibodies. I hope you can see how this is directly related to SIRVA, where the body’s immune response is working hard in the wrong place (e.g., the bursa, the rotator cuff tendon) to take care of the antigens in the vaccine that was mis-administered (for many of us, it was the influenza vaccine, but I assume the issues are the same for other vaccines as well).

In this post I’m going to go a little deeper into the mental side of dealing with SIRVA (or, heck, any injury). Skip this post if you are focused right now on the physical aspects, like surgery or PT or medication; I don’t blame you. I’m not ignoring any of those things, either, but this post is about how I am dealing mentally with the constant pain, inflammation, and associated stress and unhappiness that is part of SIRVA. In our survey, many of you have checked the box that indicates some effect of this horrible accident on your mental state, myself included (and it’s getting worse with time):

All surveyed respondents have pain in their shoulder–that’s SIRVA! More interesting is to see how very common and normal it is to have associated issues with our mental well-being. People indicated mild to severe issues with the bulk in the middle and some lucky N/A-ers.

I’m 6 months out from the flu shot that gave me SIRVA, and it is hard to write this, but while I am grasping at ways to make something positive come out of having SIRVA happen to me, I have sunk into a depression that has affected my work, relationships, and quality of life. One thing I have realized is that for me, sports and outdoor activities have always acted as a natural anti-depressant, an outlet for stress relief, and one of the great joys and focuses of my life. There is plenty of evidence to back up the claim that exercise is good for depression and anxiety.

Since I can’t climb now, I took up running about 1 month into SIRVA, and fortunately running didn’t aggravate the pain too much (it is constant pain, and running doesn’t make it worse). While I always thought I hated running, I dug deep into this new thing and soon found myself eager to go outside again for my next run, and within a month of running trails, I had gone from 5 miles to 10 miles and my right knee started hurting. Long story short, I’m now completely sidelined from running for a few months because of a combination of pushing too hard too quickly and anatomical factors that I never knew about before trying to run (I should start a whole new website on knee pain, but I won’t!).

I love/hated running for about 4 months as an outlet to help deal with my SIRVA, until my knees forbade it.

So now I can’t climb because of SIRVA and I can’t run (temporarily, hopefully) because I wrecked my knees; I had a few more miserable weekends with no activity and after seeing the tragic, high-profile suicides of Kate Spade and Anthony Bourdain in the news, I decided it is pointless to suffer alone when there is help out there for everyone and every problem. Fortunately, I grew up with a psychologist mother and have a therapist close friend so I’m well aware of the resources available; I know that many people misguidedly think that seeking help from a professional is a weakness or a step that THEY’ll never take. If you are suffering, even at a much more mellow level than these famous people who had depression, DON’T BE THAT PERSON who refuses to get help. After Bourdain’s suicide I watched an episode of his show “Parts Unknown” where he sees a psychoanalyst in Buenos Aires as part of the program. He admits that he has never really seen a therapist (except once as a teenager). His seeing this analyst was played off in the show as a jokey, made-for-TV thing; I don’t know if he took it seriously and he was only in Argentina for a very short time. I couldn’t help wondering what could have been different if he had managed to fit regular psychotherapy into his busy, jet-setting lifestyle.

There are many options once you decide to do something about depression, whether short-term and situational (like due to SIRVA) or long-term (see below for a free option). But I decided to see a psychiatrist and we discussed the best ways to deal with this wracking depression. She was very good and steered me towards solutions that were appealing to me and fit into my idea of good medicine. While my current unhappiness is caused by a temporary situation (SIRVA and loss of the ability to treat it with athletics), I’m hoping for long-term strategies to deal with major life setbacks, pain, anxiety, and stress. I won’t describe exactly what we settled on because I recommend that you seek out a psychiatrist or psychotherapist on your own, and hopefully you have good health insurance that covers it.

Between the visit to the doctor and my research, though, one of the things I want to tell you about that I am doing is a free online course in the type of meditation that produced positive immune system changes in the studies referenced above. Why not? It’s free, and may change my life positively forever (or, if it does nothing, all I lost was some time, and right now I have lots of free time since I’m not climbing or running). There are also some non-free online and in-person classes on mindfulness-based stress reduction (MBSR), like here.

My physical therapy (PT) is coming to an end after 6 months; I have a big long-awaited international trip coming up in July; and after I get back if I still can’t lift my arm without pain, I’ll be deciding whether to have surgery or stem cells. In the meantime I’m trying that 8-week MBSR free online program linked to above and I’ll certainly let you know if I thought it helped! But regardless of what happens to me, I’d say that for you, as the title of this post suggests–it’s worth a try (??).

—–

Reminder: From everything I’ve heard, the shoulder pain of SIRVA will eventually get better, but for many people it takes from months to 2 years. This is long enough that it starts to be an issue of “chronic” pain (although, fortunately, with the hope and knowledge that it will get better, with either time or the right intervention). So although it’s temporary, it takes a long time, and for many people, it takes a huge mental toll and affects our well-being. Please get help if you are suffering.

She joins me for at-home PT on my shoulder and knees, and is good for some stress relief and comic relief.

 

Surgery vs. Stem Cells+PRP

If you read the post here, you’ll recall that I saw a physiatrist with experience treating Shoulder Injury Related to Vaccine Administration (SIRVA), Dr. Bodor. He was able to accurately pinpoint the location of the needle of my flu shot using ultrasound to identify the changes to tissue (tendonitis of the teres minor, potential bone damage). He proposed a new path forward:

  1. A simple lidocaine/saline solution/flush out of the spot. And if that didn’t help in 2 months, ….
  2. A stem cell (bone marrow aspirate concentrate – BMAC) plus platelet-rich plasma (PRP) injection to the spot.

I haven’t found any information about #2 being tried on a SIRVA case, or whether it carries a risk. One correspondent from this website (thank you!) has seen a different physiatrist who is also interested in trying it, which gives me relief that it is not completely out in left field. I’ve done a deep-dive into the stem cell/PRP research to try and understand what people think about its effectiveness at treating (normal) injuries of the rotator cuff, as well as its safety.

I took all this information back to my orthopedist at home, who poo-poo’d the idea of stem cells altogether, calling them “untested, unregulated, unknown” and who recommended surgery instead. At 5+ months out, with only minor improvement (I’d say #1 above did not generate a substantial improvement), I’m interested in trying something to help me return to normal, pain-free life and rock climbing.

Since every blog post should have a picture, here is a very old one of me hanging off my left arm, back when it still worked.

Why surgery?

Unlike for stem cell treatments, there IS information out there about surgeries for SIRVA. One respondent in our survey (THANK YOU!!) has had surgery, but is too soon to report on its complete effect but indicates it was ‘extremely helpful.’ In this person’s case, a complete rotator cuff tear was observed, along with bursitis and tendonitis. Their shoulder surgery was pretty major, given the damage. (In my case, the surgeon thinks recovery will be quick, as the primary action will be just subacromial decompression and debridement, with no need for a rotator cuff repair. Unfortunately it is not uncommon for surgeons to go in to shoulders based off the MRI and find unexpected rotator cuff tears that don’t show up well on the imaging, which would turn into a more involved recovery.)

In Atanasoff et al. 2010, she describes that one-third (out of 13) SIRVA cases eventually went to surgery, but does not describe the type or outcomes specifically. One case study, Uchida et al. 2012, describes surgery performed “several months” after a SIRVA-causing shot where the patient did not get better with steroids or PT (similar to myself) but recovered fully after surgery. The procedure was “arthroscopic synovectomy and subacromial decompression” with a shaver and radiofrequency probe. Another case study on a flu shot SIRVA victim with extensive bone damage, surgery, and eventual recovery (though not quickly) is described in Messerschmitt et al. 2015. And most compelling is a case study in Hexter et al. 2015 where the author says:

“At present, there is no consensus in the literature on how to manage this vaccine-related injury. … The patient in our case only regained a pain-free and functional shoulder after washout, arthrolysis, synovectomy and decompression of the subacromial space. We recommend invasive treatment, such as that described in our case, in patients with ongoing shoulder symptoms related to vaccination that do not settle with conservative measures.”

In total, my review of the papers about SIRVA indicate that a total of 11/30 cases ended up having surgery (very consistent with the one-third described above). I do not have as detailed information as in the papers about how successful those cases were. The types of actions performed during surgeries include “irrigation”, “distention arthrography” (this is for frozen shoulder), “debridement”, “subacromial decompression,” and “synovectomy”.

I have about 3 weeks to decide what to do before my appointment for stem cell+PRP treatment. Is it too experimental? Too unlikely to work, especially considering the cost, pain, and risk? Better to just let a surgeon go in and “scope it out”, as my orthopedist said? It is a very tough decision. I’m inclined to go with Dr. Bodor’s approach because of his commitment to understanding how to help SIRVA patients and a desire to avoid a full-blown surgery. I am getting one more opinion next week from a second orthopedist, but one who I know to be more stem cell-friendly than my original orthopedist.

If you have advice, let me know!

 

Anything changed? Follow-up Survey added

Thanks so much to everyone with a SIRVA (shoulder injury related to vaccine administration) who has filled out the SIRVA Survey so far (or as I call it, the Sirvey). I hope to use your answers to try and figure out how we can get better and get back to our lives. As soon as I can, I’ll have some more blog posts telling you what people have said in the Sirvey.

So far, most of our respondents have not recovered from SIRVA yet, and are still in the phase of searching for answers (like me). This gives us a good initial picture of who gets SIRVA, where, and how they got it. It also tells us what treatments our doctors and other medical practitioners have tried to give us, and whether we think they have been helpful.

The Follow-Up SIRVA Survey, which is much, MUCH shorter, is for those of you who’ve already filled out the initial Sirvey, and have changes you want to update us with. This can be:

  • Changes to symptoms (for better or worse, hopefully better)
  • New diagnoses from different medical practitioners
  • New treatments attempted, and whether you think they helped
  • Anything else…even if you just want to vent about it. I’m listening!

Thanks so much for your time. Those of us with SIRVA are spread out all over the world; it is my great hope that by gathering this information we will learn so much by centralizing our knowledge.

 

It’s worth a try

How is a walk in the woods related to SIRVA?

Are there any natural remedies (I’m talking about free ones here, not supplements) that can help with SIRVA pain? Why not try? Skip to the bottom of this post to get straight to the recommendations without all the blathering.

Shoulder Injury Related to Vaccine Administration (SIRVA) is essentially an aggravated immune system response to the vaccine agents in a place where they don’t belong. The act of injecting most liquids into your shoulder should not necessarily produce the kind of extended pain and visible damage that SIRVA causes. The problem with SIRVA is specifically because of the strongly “immunogenic” or “antigenic” agents in the vaccine, and seems to be nonspecific to which vaccine. Here are the results so far from the SIRVA Survey for which vaccine caused our problems:

SIRVA Survey responses as of 4/30/18

So, we’re mostly flu vaccine recipients, and these numbers certainly relate to the prevalence and frequency (yearly) that we’re recommended to get the flu vaccine. But it is fascinating that SIRVA appears to be unrelated to which vaccine it is.

There is some suggestion in the literature that having previously been exposed to the vaccine before (or, presumably, the actual disease) is part of the problem: the body already recognizes it as a threat. So far, in our Survey results, 100% of people had previously received this vaccine (no one has selected “Never before”):

SIRVA Survey responses as of 4/30/18

The body’s immune system is launching an inappropriately-located response, producing the antibodies to fight the agents in the vaccine (such as inactivated influenza viruses in the case of some flu shots), and it is thought that these agents “hang out” longer in the non-vascular structures of the shoulder when compared to the muscle (where the vaccine is supposed to be injected). There are fascinating articles about how the body’s NORMAL response to a CORRECTLY administered shot (to the right muscle) is affected by factors such as stress, exercise, age, sleep, etc., and how they boost or weaken the immune system and directly affect the antibodies produced that fight the vaccine. Can we learn anything from those studies about how to deal with SIRVA?

This brings me to the point of this post. It makes me wonder: do you want to BOOST your body’s immune response to help it “deal” with these agents better (produce the right antibodies to neutralize the perceived threat to the system) or do you want to SUPPRESS your body’s immune response to keep it from going nuts on your own shoulder structures (tendon, bone, bursa)? Anybody know an immunologist who can turn these uninformed wonderings into a coherent hypothesis? What does SIRVA have in common with other mild to extreme cases where the body has an overactive immune response to a perceived thread (e.g., allergies, autoimmune disorders)? Can we learn something from these much-more-heavily-studied scenarios and apply them to SIRVA?

Recommendations

Therefore, I present below some things that are maybe “Worth a Try.” They are categorized into “immune system boosting” and “immune system suppressing”, within the constraints of available evidence. I don’t claim that the evidence for each of these things is equally strong, and please evaluate the quality of the sources skeptically. I’ll update this list as I hear of other things.

Update–I just added the “meditation” link below. This is fascinating: a study (pdf here, video about it here) analyzed the body’s immune response to the influenza vaccine by measuring antibody levels several times after vaccination. The meditation group had statistically significant increase in antibodies over the control group in antibody to the vaccine (Davidson et al. 2003). A key finding from a more recent rigorous, peer-reviewed 2016 meta-analysis of meditation studies (Black and Slavich, 2016):

“This systematic review of 20 randomized controlled trials, comprising more than 1600 participants, revealed replicated, yet tentative, evidence that mindfulness meditation is associated with changes in select immune system processes involved in inflammation, immunity, and biological aging.”

Immune System Boosting:

Immune System Suppressing:

As for me? Even if the evidence is slim for some of these, and even if I don’t have an answer to the question above (boost or suppress, in the case of SIRVA?), I’ve been trying some immune-system boosting things, like eating healthier (more fruits and vegetables, whole grains, and fish). I take a multi-vitamin now and glucosamine/chondroitin, despite the thin evidence for them helping. On the other hand, I am definitely getting vigorous exercise (I’ve started running, and run to fatigue every time). If you’re feeling guilty about NOT exercising or you would love to be able to do it but you find it aggravates your shoulder pain and SIRVA symptoms, I wouldn’t feel bad about that—it’s unclear from the evidence which is a good idea, exercise or no exercise!

Trying to eat healthy foods every day, like colorful Swiss chard, for their immune-boosting properties.

Supplements?

I have purposely avoided mentioning supplements, because I wanted to suggest things that are completely free and don’t come with the baggage of conflicting interests. But I feel like I’d be remiss for not mentioning things like zinc, multi-vitamins, and glutamine. There is conflicting evidence on whether daily multi-vitamins affect peoples’ responses to the flu vaccine, including a retracted study, which was its own fascinating rabbit hole of research for me.

In one case in the medical literature where the SIRVA patient had severe bone damage from the incident (!), she was given a combination of supplements, over-the-counter medications, and prescription drugs (ibuprofen, bisphosphonates, calcium, and vitamin D3) and experienced reduced pain, but did not recover completely in the follow-up time in the paper (11 months total).

 

A new treatment plan

Northern California is beautiful

My orthopedist in my hometown has been helpful; he has seen a few Shoulder Injury Related to Vaccine Administration (SIRVA) cases before, and he is sympathetic and has been my advocate. However, I elected to seek out further help from a doctor who has been at the forefront of recognizing and treating SIRVA, Dr. Marko Bodor in Napa, CA. He was the first person to publish a journal article about his SIRVA patients and treatment options in 2007 (although the term SIRVA wasn’t used at the time); the paper also contained measurements of the distances from skin to important structures in the shoulder in his patients and made a strongly worded recommendation in the paper that vaccine injections not be given in the upper third of the deltoid for risk of causing injury. He continues to do cutting-edge research on other medical problems and consults on a number of SIRVA cases. My visit with him and his team was extraordinary and I could not be happier about the plan he has developed for going forward with treatment.

The following post is long and full of details and medical jargon but I think it is extremely important for other SIRVA sufferers to hear all of this. Here is the takeaway message if you don’t read it: Go see Dr. Bodor.

Any medical errors in the descriptions below are mine, not those of my doctor(s). I am trying to faithfully reproduce what I have learned, but I have no medical training and may misunderstand things. As always if anyone has a suggested correction please let me know.

Step 1: Identification of the Exact Site of Injury

Before first speaking with Dr. Bodor on the phone, I had not heard any mention of the teres minor (a part of the rotator cuff) from my doctor at home, who thought the vaccine was injected into the subacromial bursa. Dr. Bodor felt the MRI evidence for that was on shaky ground and that the teres minor insertion had a more interesting appearance on the images. While my physical exam at home was consistent with subacromial bursitis, apparently injury to the teres minor tendon closely resembles those symptoms, so the two are extremely difficult to distinguish in the doctor’s office. If you saw my post on 3 months of treatment so far, you’ll see that I had a cortisone/lidocaine injection to the subacromial bursa that didn’t help one bit.

Dr. Bodor is an expert in the use of ultrasound for diagnostic imaging, which offers one improvement over an MRI of being dynamic, allowing in-person discussion and review while they probe the shoulder with its waves, and it allows the comparison of both shoulders at the same time to look for abnormalities. Not every specialist has the equipment or is trained in the use of diagnostic ultrasound, so as a tool in the arsenal of complex SIRVA treatment, it is important to seek one out. Using ultrasound, Dr. Bodor took extremely careful and repeated measurements of the structures in my shoulder and showed that my teres minor tendon was inflamed (tendonitis) and a small abnormality at the bone/tendon interface suggested that the needle hit bone. That explains why the shot was so painful at the time. It also makes sense anatomically: he measured the distance from skin to the humerus bone at the height the flu shot was given to me; it is 1.1 cm. The flu shot needle is 2.5 cm long (one inch).

To confirm the suspicion that the teres minor tendon is the source of my sharp pain on lifting my arm, Dr. Bodor injected the anesthetic lidocaine only (no steroid) very precisely into the spot with abnormalities on the ultrasound. I lifted my arm with no pain for the first time in 4 months. (Note that the subacromial injections from my doctor at home also contained lidocaine, so they would have also provided pain relief if that was the true site of injury.) The constellation of pain in the surrounding muscles of my shoulder and neck is also consistent with suffering from tendonitis of the teres minor, where other structures in the shoulder overcompensate for the injury and become tense and painful.

The correct diagnosis of the location of the mis-administered flu vaccine is extremely important to guiding recovery. For this alone I am so grateful to Dr. Bodor for what he has been able to accomplish – before even starting to discuss options and prognosis. Knowledge is everything.

Step 2: Make a Plan

With the site of the vaccine injection very accurately determined, it was time to make a plan. Based on the medical literature, there is no obvious “magic bullet” that will dissolve SIRVA pain, make the inflammation vanish, and immediately cure your shoulder. Multiple doctors and researchers have tried different things, and have written them up in the journals to try to help other doctors figure out treatments, but the number of studies is still too small to know which interventions have worked. Besides, every SIRVA case is different, both in terms of the exact site of injury (based on precise location, angle, and depth of the needle) and the body’s individual immune response to the agents in the vaccine (which may depend on factors such as having previously received the same vaccine).

Given the location of my flu shot and the damage to tendon and bone, Dr. Bodor, who is also a leading expert in rehabilitation medicine and is actively researching stem cell and platelet-rich plasma (PRP) approaches to enhancing the body’s healing mechanisms, ultimately recommended a bone marrow stem cell and PRP injection.

However, he first decided to try something simpler and less painful/invasive (the extraction of bone marrow stem cells from your own spine is apparently not comfortable). He explained to me that studies have shown that simply provoking an inflamed or injured area with a needle can kick-start the body’s response to healing by sending the right kinds of cells to the area, and there is also precedence in the literature for using saline to “wash out” or irrigate the site of a vaccine-induced shoulder injury. So, he made a plan to wash out the area (under precise ultrasound guidance for where to put the needle) with a combination of 3 mL of saline solution with the anesthetic lidocaine.

Step 3: Injection

I returned to his office the next day (which he very thoughtfully scheduled) and he took the time to do this injection with great care. There was nothing like the typical doctor’s appointment (in my previous experience) where your doctor is rushed, overworked, and distracted; he was 100% focused on my shoulder and I finally felt like I’d found a doctor who cares as much as I do about healing my shoulder. He injected the solution into the precise area to do irrigation of the tendon and gentle debridement of the bone area. While I was there he also did some other trigger-point injections to help relieve the tension in the surrounding muscles.

I also learned something important during this appointment. We talked about how I had been prescribed high doses of NSAIDs (I used naproxen/Aleve) for the pain, and how I took them for 3 months because it was somewhat effective for the constant regional shoulder/neck/scapular pain (although not for the sharp pain). Both my primary care doctor and orthopedist had encouraged the high dose and even to increase the dosage when the pain spiked. Instead, Dr. Bodor explained that some of the current research suggests that NSAIDs may block the body’s natural healing responses to tendon injuries because of the way the medicine blocks pain so effectively. (I am sure I’m oversimplifying this. Consult a doctor for real medical advice.) Maybe with subacromial bursitis it would have been a good thing to be on NSAIDs, but for healing tendon injuries there is a new way of thinking in the medical community about not overusing NSAIDs. I probably should not have taken them for 3 months.

For the pain in the surrounding muscles due to overcompensation and guarding the injured shoulder, Dr. Bodor recommended continuing to see an acupuncturist for trigger-point release, and he provided me with measurements based on the ultrasound help my acupuncturist locate the right points. He was also very patient and considerate with my constant questions and explained to me the medical mechanisms of why acupuncture could potentially help for this, which is something I’ve always wondered.

Step 4: Assessment

Now that the simple solution has been tried (injection of saline to wash out the area and provoke a healing response), I am to wait 1-2 months to see if things improve. They are not expected to improve quickly: The lidocaine anesthetic wore off after a few hours, as it does, and 2 days later the area is irritated from the poking and wash out. I now know to think of that irritation as a good thing, not something to be masked with NSAIDs, because, fingers crossed, it could provoke the body to heal the area.

If it doesn’t, I will return in June to try PRP/bone marrow stem cell injections under his precise ultrasound guidance. Dr. Bodor is realistic about the uncertainty in whether these solutions will work. No one knows yet how best to fix SIRVA shoulders, but Dr. Bodor cares deeply about trying to find out. I feel like I am in the best of hands with Dr. Bodor; I think he is a brilliant and compassionate scientist/doctor.

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For the second time in two days, with the anesthetic in the injections, that afternoon I enjoyed a few short-lived hours of respite from my shoulder pain and in the evening I went for a blissful run on the beach at Bodega Bay, filled with relief and gratitude and hope and far more knowledge than I came in with.

Sunset run at Bodega Bay

A first look at the data

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:

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

Anyone tried kinesio tape? Here’s my shoulder after a PT did it up. I can’t tell if it helps but I’m trying everything.

My SIRVA story, 3 month update

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.

Ow! My shoulder!

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!

Support Legislation for a Universal Flu Vaccine

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.