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.

—————————

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.