SIRVA 10 month update

My own news is good this time—I am finally seeing some improvement! I hope the same feeling of pain relief visits all of you with a Shoulder Injury Related to Vaccine Administration (SIRVA). It is a bit early to claim victory, though; I’m not 100% pain free in the shoulder by a long shot, but the trend is better and better on a weekly basis.

October 13 marks my 10 month anniversary of the flu shot that gave me SIRVA and potentially a bone infection. Here is the back history:

It’s hard to believe 3 months have passed since surgery, and over 1 month since the antibiotics ended. Since then, my range of motion has improved and I can do a few more things functionally without pain that used to bother me, like shampooing my hair. I’m taking baby steps towards returning to the one sport I truly love, rock climbing, by gently strengthening my arms and forearms and fingers and core as much as I can without going too far, too soon, with the overhead movements.

The timing of the feeling of improvement suggests to me that either the surgery was successful (irrigation, debridement, PRP, new blood flow to the area; all could be responsible) or the infection was a true positive and the antibiotics caused the bone damage to start repairing (and hopefully, eventually, reverse completely—but it takes time). I’ll never know for sure which it was. I’m going to make sure I get a 3rd MRI by about the 1 year mark, if they let me, to assess the appearance of the bone marrow edema.

The biggest takeaways I have from my experience so far is:

  • Try to advocate for getting an MRI early and, if your pain hasn’t resolved, make sure they let you get another one later. The early one may be important to prove that the changes took place due to the shot, and weren’t pre-existing issues. Bone damage appears to be pretty common with SIRVA. My MRIs were at 1 and 6 months post-shot. At 1 month it barely showed up and the doctors didn’t catch it as a part of the problem. At 6 months it was obvious.
  • With no improvement at 6 months it seemed like it was time to take more drastic steps. Surgery was the right decision for me. (…..or maybe I’d have had this improvement anyway with just more time and no intervention. Who knows! But with average time to recovery from SIRVA anecdotally being EITHER very fast—i.e. within the first 3 months—or very slow—1-2 years, it seems like if you’re not lucky enough to fall into the first group, you may as well try to accelerate things to avoid it taking years.) Surgery was also very painful, unpleasant, and there may be other reasons why it’s not the right choice for you in your situation, but it seems likely to have been the catalyzing factor in my improvement (for whichever reason).
  • The medical literature on SIRVA does not mention bone infection. The effect of P. acnes infection in the body is currently controversial, and the rate of false positives is high. But bone infections from punctures and other shots are known to be possible. If you are already having surgery, and have bone damage on an MRI—I’m no orthopedic surgeon and I find they don’t take kindly to suggestions, but you might also ask about getting biopsies while they are in there, and including P. acnes in the biopsies as it is commonly found in the shoulder skin and sometimes takes up to 2+ weeks to culture, so they need to hold the samples at least that long. My surgeon biopsied the bone and 2 other places in the synovial tissue and only the bone sample came back positive.

I’ll repeat again a quote from a paper by Hexter et al., 2015, in the journal Shoulder and Elbow:

“The patient in our case only regained a pain-free and functional shoulder after [surgical] 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.”

I’ve gotten a bunch of responses to the SIRVA Survey (THANK YOU!!) and will post some information soon about what you all have tried. However, most of the folks who’ve filled out the Sirvey have done so because they haven’t recovered yet and are still searching for solutions, so I still don’t have a sense of what else people have tried that has really worked. Please, please fill out the follow-up survey if you have filled out the first one already and have changes to report!


For those of you still struggling with lack of improvement, or even worsening symptoms (mine got worse at around the 3-month mark), I am really sorry. I hope that every story of improvement and recovery at least brings a little comfort that your SIRVA pain will eventually resolve. Other peoples’ stories have been helpful to me, so I am trying to add my own to the digital pile. Thanks for sharing your experiences with me, either through the Survey or by email.

Getting the flu shot again?

Fall is just about here, which means the CDC campaign to get everyone’s yearly vaccine for influenza is ramping up. We’ll be seeing tons and tons of articles about it in all our media outlets in the next few months, which will be hard for some of us to take in. It’s time to decide if I’m getting a flu shot again. Are you going to get it?

Getting a shoulder injury related to vaccine administration (SIRVA) is a frustrating and conflicting experience for anyone who is pro-vaccine. It’s been very difficult to talk about it with friends and colleagues, because although I’m normally very open about my injuries (it’s a favorite subject among rock climbers), there is something unique about a vaccine-related injury in the public discourse. It’s a controversial and inflammatory (haha) issue and many people (like myself, before this happened) think that vaccines are very safe (with the possible exception of some rare and potentially devastating complications like Guillain-Barré syndrome), and certain claims to the contrary are pseudoscience.

But that was because I had no idea about the risks of shoulder injury from a mis-administered shot given by an incompetent person. Now that I am aware, in theory, I could prevent someone from screwing it up on me again. (I have thought about getting a bulls-eye tattoo on the meat of the deltoid muscle where the vaccine should go!) On the one hand, SIRVA is completely preventable; on the other hand, it is a painful and traumatic experience that takes us away for months or even years from the things we love to do. Here are a few things that we love to do that we have been prevented from doing or impaired at since the incidents (all of these are from responses to the SIRVA survey):

  • Rock climbing (all right, that’s me)
  • Weight lifting
  • Golf
  • Picking up my dogs or boys
  • Walking the dog, walking in general
  • Ultimate Frisbee
  • Gardening
  • Biking
  • Catching
  • Swimming
  • Yoga, planks, push-ups
  • Playing with the kids

And not just the fun stuff, but also, survey respondents have had difficulty with many everyday things:

  • Trouble driving with that arm
  • Putting on deodorant, brushing hair, washing hair, styling hair
  • Putting on/taking off clothes (especially bras)
  • Trying to itch certain parts of the body
  • Carrying groceries
  • Cleaning the house
  • Shoveling snow, snowblowing
  • Sleeping on that side
  • Laundry/dishwashing

There is no doubt about it, SIRVA is a disruptive, painful, life-upending experience that all of us wish we could have avoided.

The CDC is trying to make administrators of vaccines aware, but in my opinion, it’s too little of an effort. Also, their primary recommendations in that link for needle length (1-inch and greater) are not in line with what some authors of SIRVA papers have written. Pretty much all of us who got SIRVA got it from a 1-inch needle, which, frustratingly, the CDC still recommends. (Note that using a shorter needle alone may not be protective if it is still injected in the wrong location too high on the shoulder.) But from Barnes et al., 2012:

Based on Lippert’s study, corroborated by an ultrasonographic study of deltoids by Koster and Poland, a compelling argument could be made to change vaccination technique. Lippert suggests a weight-based vaccination technique: for instance, that a 1/2-inch needle be used for any female who weighs up to 70 kg [154 lbs] and any male who weighs up to 75 kg [165 lbs]. A 5/8-inch needle is recommended for any female who weighs between 70 and 115 kg [154 – 250 lbs] and any male who weighs between 75 and 140 kg [165 – 308 lbs]. A 7/8-inch or longer needle should be used for any female who weighs 115 kg [250 lbs] and any male who weighs 140 kg [308 lbs]. This recommendation could conceivably create a 0% overpenetration rate and a 10% underpenetration rate. … These methods could potentially prevent SIRVA as well as other problems associated with overpenetration of vaccination.

What do you think? There are strong arguments for getting the flu shot every year, some recent and intriguing arguments against getting it every year, and the usual debate about the effectiveness of each individual year. Are you going to get it?

 

PICC life

After the bone biopsy came back positive for infection, which was 2 weeks after surgery (for this type of bacterium, the cultures take that long), I started an aggressive course of IV antibiotics immediately. The doctor prescribed 6 weeks of Rocephin (ceftriaxone) as a good bet to destroy the infection deep in the bone. This antibiotic is given once a day, every day, through a Peripherally Inserted Central Catheter (PICC) line. Warning: there are some ugly PICC line pictures in the post below.

PICC line during a daily IV infusion.

I cancelled a long-planned vacation and settled in to PICC life. There are many, many webpages and youtube videos dedicated to helping new PICC-liners adjust to having it in and giving tips about how to go about daily life with a catheter coming out of your upper arm. Many of these folks, including children and teenagers, have had lines in for months or years for chronic illness and I am just in awe of their resilience and fortitude. I had mine for only 6 weeks for an acute problem, and as of two days ago, it is OUT and done.

In any case, if you are also getting a PICC line, there are two main (I hope) useful pieces of information for you readers from this long and rambling post about my experience with it:

  • The PICC line arm for me was pretty hard to use for at least a few days to maybe a week after insertion. I ended up needing a lot more help than I thought I would, since I assumed it wouldn’t be that bad. Be prepared to have an impaired arm for a little while.
  • If your skin is reactive to adhesives, don’t suffer through a dressing that is uncomfortable; keep asking for changes to the system until you find one that works.

Although there is already tons of internet text describing peoples’ experiences with PICC lines, I found it helpful to know I wasn’t alone when weird things happened, and I wondered multiple times about going to the ER when things didn’t seem normal. Heart palpitations, rashes, blistering, stabbing pain at the insertion site, mild pain up along the PICC line path—all of those things happened in 6 short weeks that felt like a lot longer. In my case none of them turned out to be emergencies or serious complications, thank goodness.

The worst part of having the PICC line for me was that they put it into my *good* arm (righty)—my bad arm (lefty) had just had surgery 2 weeks before. That meant I immediately had two impaired arms, although lefty was technically cleared to do stuff because the surgery was not extensive. But until the PICC line insertion pain in righty settled down, I had to switch immediately to doing everything with lefty (which may have been good for post-surgical recovery, I don’t know); but it was hard and very painful. I just say this because IF you are going to end up with both arms out of commission it is good to be prepared. Carrying groceries was impossible at first, for example. (Note that you are not supposed to lift anything heavier than 10 lbs with the PICC line arm.) Even driving hurt the PICC line arm. After the first week or so, this all got much better.

I’m one of the many unlucky people who have a bad skin reaction to the adhesives and chemical cleansers used under the PICC line dressings. (I already knew my skin was sensitive because the adhesives in band-aids and kinesiotape give me skin trouble.) I was grateful for all the information on the web from people who tried different combinations of materials, so here is my experience. The dressing used on the first day (a Tegaderm product) caused my skin to blister. The second day, they switched it out for another type of dressing, but that type didn’t have a “wing guard,” and the plastic itself (or the plastic plus ChloraPrep plus adhesive) reacted badly against my skin and was quite uncomfortable:

This is the type of clear PICC line cover without a wing guard, the 2nd type of dressing they tried after the first reacted badly. This one just got very irritated below the plastic part, as you can kind of see.
This setup was really uncomfortable. I don’t recommend it.
This is the new setup (under the dressing) WITH a wing guard. Unless you’re allergic to the adhesive of the wing guard itself, it’s so much better than the above.

This was just my first week with the PICC line so I wasn’t sure how much discomfort I should be in; I told the nurses every day that I felt “like sawing my arm off,” but no one moved to make a dressing change for days, so I figured it must be normal. Finally I got a dressing change one day before the scheduled date, and I felt so much relief I could not believe that we didn’t do it sooner. Moral: if you feel like sawing your own arm off, there is probably a better dressing solution out there for you. If no one offers, you should ask for it.

I asked the PICC nurses if there is a type of dressing that is uniformly hypoallergenic, that even the most reactive skin types don’t blister and rash up from. I was told that everyone is so different, it’s just a matter of experimentation, unfortunately. This time they applied the ChloroPrep but then wiped it off with alcohol, let that dry, applied Cavilon spray, let THAT dry, and then dressed it. This third dressing that we tried was much, much better. It’s made by Allevyn. The problem is that the adhesive is not very strong, and it peels away, so it needs to be secured with paper tape.

This is the Allevyn dressing not sticking very well and detaching from my skin, which is bad. While the adhesives are gentle, they don’t work as well, but when secured with more paper tape than this, the setup is secure and it worked well for the remaining 5 weeks.
Here’s another view of the Allevyn dressing.

The cover they gave me at the hospital to go over the dressing was also seriously uncomfortable (itchy and tight). The PICC line nurses recommended cutting up a clean sock and using that instead—I agree, it was way more comfortable (and potentially stylish, depending on what old sock you use…)

Sock for a PICC cover–nice and soft, works well, clashes with everything.

Just as I got the dressing discomfort sorted out after week 1, I started having an allergic reaction to the antibiotic. It was a full-body rash that occurred as my sensitivity to the Rocephin began to build up. After a few days of trying to manage it with Benadryl and other allergy drugs, we gave up on the Rocephin and switched to a different antibiotic, Invanz (ertapenem), which fortunately I was not allergic to.

As for other PICC line-specific side effects, the heart palpitations were something I never felt quite comfortable with. It sounds like they are a pretty common side effect, especially if the PICC line goes too close to the heart, but obviously you should seek an actual medical opinion if you are having this problem. The first night after the PICC line was inserted, the heart fluttering feeling was the worst (especially when laying down), and the next day they pulled the catheter out a little bit (1 cm) and the sensation stopped happening so often. But whenever I took a deep breath I felt something abnormal, hard to put my finger on, just…weird.

Because of the weird sensations in my chest, and the necessity of not getting the dressing wet, and the fact that it was really hard to shower, I opted not to do any strenuous exercise while I had the PICC line, but if I had been on the line for longer that would not have been an option. I really, really miss getting outside and exercising….not to mention that dialing back your activity may have persistent consequences that are hard to bounce back from. However, I realize that for some people with PICC lines due to chronic illnesses, exercise isn’t always possible and I am so grateful that I have the good fortune to be able to return to some kind of sport.

——

I keep getting asked if my injured arm is all better now that the course of antibiotics is over, and I always explain what was explained to me, which is that the microbiological resolution comes first (killing the bone infection) and then the bone damage, or in this case osteomyelitis, will take more time to heal, on the order of a couple of months, typically. For now, lefty doesn’t feel significantly better than before the surgery and antibiotics, but I’m very optimistic. It has been 8.5 months since the flu shot. I might also be able to start climbing soon, especially knowing that the ongoing pain isn’t rooted in soft tissue that can be further damaged by activity but is from edema in the bone. One step at a time. I will be very happy if this all resolves inside of a year.

Happier times: climbing in Greece, 4 years ago. Photo by Fred Berman.

Possible Bone Infection from Flu Shot

The results of my bone biopsy taken during surgery for my Shoulder Injury Related to Vaccine Administration (SIRVA) came back positive for a slow-growing bacterium, Propionibacterium acnes (P. acnes), that commonly lives in the skin of the shoulder and head area. Assuming the result is not a false positive, the bacteria were carried by the flu shot through my skin and inoculated the bone when the shot hit the greater tuberosity of the humeral head.

While a properly-administered flu shot to the deltoid muscle may also carry this bacterium to the injection site (swabbing the skin with alcohol is not enough to completely eliminate P. acnes, which also lives deeper in the dermis), in the muscle the immune system can fight it, and infections following vaccinations to the deltoid muscle are rare. A mis-administered shot to the shoulder joint and bone (instead of the muscle) deposits the bacterium in an “immunologically diminshed” region where the body may be unable to fight the invader: “Direct seeding of bacteria into bone can occur as a result of open fractures, insertion of metallic implants or joint prostheses, human or animal bites and puncture wounds” (as explained here).

My exact type of infection, while essentially never observed in vaccinations because it requires spectacular mistakes to be made during injection, is more commonly observed as a complication of shoulder surgery. Most of the experience in treating it comes from that analog. It is slow-growing, difficult to detect, and often does not cause a fever or other typical symptoms in infection, including telltale signatures in blood—it just causes pain and stiffness in the shoulder post-operatively (or, in my case, post-vaccination). If left untreated, or even if treated, it can cause major damage and require repeated shoulder surgeries (debridement of irreparably damaged bone) or even shoulder replacement. It is bad news.

My MRIs at 1 month and 6 months post-flu shot, showing a growing bone marrow edema in the humeral head.

We don’t know for sure if the bone marrow changes on my MRI, which I previously attributed to the purely inflammatory effects of SIRVA in this post, are being caused by this infection, which would then make it called “osteomyelitis” or bone marrow infection. There are more or less 3 possibilities for what could be going on here:

  1. The biopsy result is real, and the slow-growing P. acnes infection is responsible for my pain and bone marrow edema on the MRI. (This is plausible—my pain took an increase at about 2.5 months after the shot, which would correspond reasonably well with the timeframe for P. acnes infection to proliferate.)
  2. The result is a false positive on the biopsy, and the pain and bone marrow edema on my MRI are from the usual SIRVA mechanisms seen in many cases and described in an earlier post.
  3. The result of the biopsy is real (there is P. acnes), but it is not “pathogenic”, i.e., is not responsible for my pain and growth of the bone marrow edema.

Because the risk of not treating a bone infection are too great, especially for someone who hopes to return to overhead sports (in my case, rock climbing), we have no choice but to assume #1 is the case and treat the possible infection aggressively. The standard treatment is intravenous (IV) antibiotics for several weeks.

On July 19th I had a Peripherally Inserted Central Catheter (PICC) line installed; it goes from a vein in the arm into the chest near the heart. I get an infusion of antibiotics every day through the line for 6 weeks. It’s been almost 2 weeks so far. I’ll write another post about the PICC line experience, but that’s the update on this unusual twist in my SIRVA case for now.

 

Surgery it Was

I don’t have any pictures from surgery, so here is Antelope Canyon.

If you read my other posts debating a surgical versus non-surgical approach, you can see that I’ve been struggling with the questions of what will be most likely to be effective for my Shoulder Injury Related to Vaccine Administration (SIRVA) while carrying the least amount of risk. In the end I spoke to 3 orthopedists and 1 physiatrist. As you might expect, all of these doctors’ recommendations were in line with their specialties: the orthopedists recommended surgery and the physiatrist recommended non-surgery (bone marrow aspirate stem cells).

One local surgeon in particular convinced me that surgery was essentially the “conservative” approach. He described going in, taking a peek around, removing inflamed tissue in the bursa, irrigating, and bringing fresh blood flow to the area. He said that recovery would be extremely quick. It was appealing. And sentences like this in the literature were particularly appealing:

“After the surgery, the patient appeared to make a complete
recovery. One week later, the pain dramatically diminished. Six
months later, the patient was able to play golf again.” (Uchida et al. 2012)

“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.” (Hexter et al. 2015)

How’d it go?

Well, I don’t know yet. I had the surgery on July 2 and have been waiting for the pain to calm down before commenting on it here. They did a partial bursectomy, debridement, and took three biopsies from different locations (including the bone at the site of the bone marrow edema). I wish I had the experience of the first quote above (one week later, dramatically diminished pain). At 2 weeks out, I’m still experiencing pain from the surgery so I can’t tell if there’s a reduction in SIRVA pain. It’s still too soon to post about it, in a way, but I’ll update this later in a few weeks when I know more.

Like I said above, I was told the surgery would be just a minor procedure; that I could be typing at work the next day, able to take it out of the sling and move around, and that it would be comparatively painless. Those expectations did not agree with the reality. My arm was very painful for the entire first 1.5 weeks and I had to take a lot more pain medication than I wanted to, and I couldn’t really use the arm for anything.

It’s only been the past few days that I’ve seen gradual improvement in the post-surgical pain and have begun lifting (very light) objects with that arm. So, I don’t know why, but it wasn’t my experience that this surgery was a total nothing-burger like I’d been told to expect. My range of motion is still quite limited. Now, I understand that all of these things are extremely normal for many shoulder surgeries (and in fact at 2 weeks a person would still be in a sling for many types of repair), but those shoulder surgeries are much more complicated than a bursectomy/debridement.

I asked my surgeon if he could explain the mismatch between what he thought my pain level would be and what it turned out to be. In typical fashion he shrugged and repeatedly insisted that there was nothing HE did that would explain the high amount of pain, which isn’t helpful. But then I asked him if it could have been the bone biopsy, and he said maybe. So maybe that is what’s so painful. Also, during surgery they put your arm through a range of motion that my SIRVA’d shoulder hadn’t been through in 7 months prior, so maybe that was it. I don’t really know.

Anyway, the point is, at only 2 weeks the post-surgical pain and limited range of motion is still worse than the pre-surgical pain and limited range of motion, so I can’t say for sure yet if it will have helped. But the results of what the surgeon saw when he was in there are not promising for the surgery being effective, unfortunately.

In my case, the bursa was not that inflamed, unlike the cases above with very effective surgeries, so the bursectomy is unlikely to have helped. On the other hand he observed my bone damage when he went in to take the biopsy; he noted that the bone was abnormally soft for a 36-year-old with no history of osteoporosis: “The bone appeared to be soft during penetration of the awl.” Just like Dr. Bodor identified using ultrasound, he saw damage to the teres minor tendon: “There was some slight partial-thickness tearing noted of the posterior rotator cuff adjacent to the infraspinatus teres minor insertion, and this was also adjacent to the area of the greater tuberosity where the patient had bone marrow edema by MRI.”

Basically, because the primary cause of my pain is likely to have been the bone damage and slight rotator cuff damage at the teres minor insertion, the bursectomy may not do much. He did debride the teres minor tear but he did nothing for the bone damage, except take a biopsy.

We might have been able to predict this from the MRI, which showed over time a decrease in the bursitis signal between 1 and 6 months and a blossoming of the bone marrow edema that could explain the spike in my pain that occurred at about 2.5 months after the shot. However, MRIs and other imaging are not always straightforward to interpret, so they would not have really known the layout of the damage without going in surgically. Now we know, and the results are mixed, good news/bad news: the good news is that the bursa wasn’t horribly inflamed, but that’s also bad news, because (in my admittedly limited understanding of medicine) that is the one thing related to SIRVA that can be fixed with an EASY surgery (bursectomy). From here on out the rest is wait-and-see.

 

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”)
  • 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).

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).