SIRVA 18 month update: good progress

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

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

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

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

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

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

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

…..

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

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

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

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

 

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


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

 

Bone Broth

Bone damage is really common with SIRVA, along with damage to tendons in the shoulder from a badly mis-administered shot. In the spirit of trying anything that might possibly help with healing and can’t hurt, I decided to make bone broth, which is a somewhat trendy way to get the collagen- and nutrient-rich substances from animal bones into our bodies, and hopefully help the bone damage heal even faster. The following post is not going to be useful or appealing to vegetarians; sorry!

I got the idea recently from a short Outside Magazine article about gelatin for athletes to help with injuries, which I haven’t found online yet so instead of linking to that, you can get the idea here. The concept is based on some research showing that the blood contains molecules thought to stimulate collagen growth about an hour after consuming the gelatin.

I bought a box of gelatin powder and, being too impatient to even make (generic) Jell-O with it, I followed the advice to pour some in a glass, mix with juice, and drink, and try to exercise about an hour later. What a mistake! It was disgusting. I do plan to use it to make “Jell-O” cubes following recipes for athletic gelatin snacks, or you can also just buy a gelatin supplement.

Next I remembered hearing about bone broth, which also naturally contains gelatin. I decided–why not? It’s worth a try. I won’t post a bone broth recipe here because there are lots online, like this one. Or you could join my nutritionist friend’s group, Fresh Things First, and use her recipe and tips.

You can get your bones at any butcher and they can be beef, chicken, pork, whatever they have that’s appealing to you. This “natural” butcher sent me home with a massive cow femur and knuckle. He said his band saw was broken so he didn’t even cut it for me–suggested I cut it at home with a hack saw. I should have gone somewhere else, but oh well.

A very large bone

The funny thing (sort of) is that my husband is a more-or-less vegetarian so he wasn’t too psyched when I asked him to please cut up my cow femur. But being supportive of my drive for nourishing this injured shoulder, he did.

My vegetarian husband wearing a dress shirt while using a hack saw on a large cow bone

I cooked down the bones for 24 hours along with some vegetables and the contents of our “broth bag”, or scraps we save in the freezer for veggie stock. Now, my nutritionist friend recommends leaving the fat in the broth as it is nutritious for some purposes, but another friend and I agreed that the “feel” of the extra fatty broth wasn’t appealing, so I let it cool overnight in the fridge and removed the fat from the top. However, since we don’t bring meat very often into our mostly-vegetarian household, I wasn’t going to let any part of this go to waste. So I looked up how to render the fat (basically driving off the moisture and sterilizing a bit to preserve freshness) and did that.

Fat skimmed off the bone broth
After rendering, draining into jars

I’m not totally sure what I’ll use the fat for, since my husband won’t want to cook with it, but he hates wasting food even more than he hates eating animals so I’m sure it’ll get consumed.

How did it turn out?

I have to be honest, I’m not in love with it, but I’ll be drinking and making soups with this bone broth for the few months while trying to nourish my shoulder tendons and bone back to full health. I think the bones being from grass-fed cattle gave it a strange and rangy flavor. My broth didn’t “gel” much so I suspect I did something wrong. Any bone broth advice is welcomed. I think this will be good in soups with other strong flavors to overpower some of the essential beefiness of it.

Any other notes on bone and tendon health?

I’m also trying calcium, vitamin D3 and vitamin C supplementation along with this extra gelatin and collagen. When I remember to take it I also pop a glucosamine/chondritin supplement. I have no idea if any of these help, and scientists aren’t real sure either, with some looking more possibly helpful than others. Probably best to consult a doctor or nutritionist for help here, and try to find someone who takes a science-based approach. If you have any advice or suggestions for nourishing tendon and bone, please let us know!

It’s worth a try, Part 3: adapting

My “it’s worth a try” series is just a bunch of rambling about things I’ve tried (that are free, for the most part) to improve my situation while stuck with a Shoulder Injury Related to Vaccine Administration (SIRVA) for however long it takes to resolve (hopefully, for you, a short time). The whole idea of “it’s worth a try” is that it probably won’t hurt anything, and may help, so why not?

The first post was all about immune system support through things like diet and exercise. The second post was a clumsy attempt to describe what I’ve learned about the struggle of having a depressing hardship like a debilitating injury, and the things I’ve tried to help deal with it. Of course, this experience is more or less universal (almost everyone gets ill or injured at some point in their lives, some much worse than others) but I’m just throwing my observations out there into the digital pile.

In the second post I talked about picking up a new hobby, running, which just led to knee pain and more bills, PT, and despondency (although at least that injury is one I caused myself, instead of one caused by someone else’s incompetence, like SIRVA). For me, the theory behind running to help with SIRVA is that pumping the arms in a range of motion that wasn’t too painful would help keep things moving, improve blood flow, and maybe (long shot, but worth a try!) help my shoulder heal faster.

After running failed to pan out because of my knees I bought a bicycle and started biking, although that definitely hurt my SIRVA shoulder more than running did. It would be typically quite sore after a bike ride, but I don’t think it was doing any damage, since the arm stays within a narrow range of motion. (At this point it was at least 6 months after my SIRVA injury; I probably couldn’t have done this right away because of the pain.) Also, I believed biking to be potentially helpful for my particular problem after I found out I had the bone marrow edema (very common with SIRVA), and there IS plenty of research from the field of osteoporosis research showing that loading weight is good for improving bone density. Again, I don’t know if that’s applicable here, but why not? It’s worth a try. (My follow-up MRI at one year showed the bone marrow edema as essentially healed, although that could have been for other reasons. It’s complicated and there’s a lot we don’t know.)

Along the same lines of bone healing, one of my doctors recommended this program to me: osteostrong. I went to the two free sessions at a place near me and didn’t continue after that, because it is expensive, but the theory is very interesting, and because it came recommended by a doctor, it feels like it has some legitimacy (?). I hope biking covers the same category of weight loading on the humerus. Now I just have to make sure I don’t get injured biking….!

One other “new” hobby I picked up after getting SIRVA was art. If your dominant arm is your SIRVA’d shoulder, this probably won’t work for you, and I am very sorry about that. But for me, I hadn’t done anything artistic since taking art classes in high school, so I looked at my local community college’s extension catalog and picked out a class in pastels. We spent a day in the classroom and a day sketching outside. I don’t think I’m at all talented, but it doesn’t matter—it’s a form of personal self-expression (even if it looks “ugly,” it’s what I wanted to express), it’s enjoyable to do, it can maybe even be therapeutic. In my case, it also gets me outside (all I want to draw are landscapes).

Sometimes you have to bundle up to go sketching outside. This would be “extreme” plein air sketching in my Selk’bag.

So far I have used art as a tool to get out to the same beautiful places as my partner and friends, and then I just go off and sketch while they climb or do whatever active things I can’t do right now. I love it, and I look forward to getting out sketching. In fact, I was just in a cold, rainy, beautiful place on vacation, and I was itching to get outside to draw even though the weather was foul. I went out and sat under a bridge to avoid the rain and sketched until my fingers were too frozen to work anymore. But otherwise, I stick to sunny days and beautiful scenery, and draw my heart out.

 

The other “hobby” I picked up is making webpages, like this one, and another one that plots and tracks snow data from year to year. Forcing myself to learn new skills is challenging and ultimately very rewarding. I wouldn’t have made either webpage if the injury hadn’t driven me inside on all those weekends last year, so there is that I am thankful for.

 


The bottom line here is that it is probably hard for any of us to see any “silver linings” come out of having SIRVA, but at least I hope I can look back at the new things I tried during that time and say that maybe I’m glad I had the opportunity and motivation to try them, and that my life is enriched for having done so. And I chose some of these things because I thought they might help with either the physical or mental aspects of dealing with injury, for which I say, if it’s not going to hurt something, then it’s definitely worth a try.

I don’t know if any of my new post-SIRVA hobbies—biking, art, blogging ;)—will stay with me forever after I get back to normal life, but I hope so. In particular, making this webpage has personally been a source of comfort and relief. I’m grateful for the people I’ve met through this site so far (and yet to come) and intend to keep it going long after I’m healed. (Although I hope there comes a time when it’s not necessary to have a webpage where people go to find SIRVA information and support, because they will be able to get it from their doctors, PTs, and other health care practitioners once SIRVA awareness becomes more widespread. I believe it will.)

SIRVA 13 month update: new MRI

I missed putting up a 1-year post with an update on my Shoulder Injury Related to Vaccine Administration (SIRVA) because I wanted to use that month to write about talking to doctors about SIRVA. Here we are in January, and today’s the 13 month anniversary of my flu shot (12/13/17).

I got a new MRI on 12/18/18, almost exactly one year later, so I have MRIs to compare at 1 month, 6 months, and 1 year. My shoulder is looking good on the MRI, with the bone marrow edema essentially gone.

But I was able to get the 1 year MRI in the first place because I’d had a bit of a setback. I was climbing again (very, VERY easy stuff) a few months after surgery, in Fall 2018, 10 months or so after the shot, and I guess I overdid it and something in the shoulder started hurting badly (original level pain) and that lasted about 4-5 weeks. I don’t know if I aggravated something new (from sad, weak muscles) or it was related to the original inflammation/rotator cuff tendon damage/bone damage. Because MRI suggests everything is fine in there (PHEW!) the going theory is that I just over-strained it. I took 6 full weeks off and just started easy climbing again (back to the beginning!), and it’s going okay.

In the meantime I have been able to ski, although using the ski poles is not easy on the shoulder and it aches afterwards. For me, I’ve been very lucky and have been able to keep doing sports as long as they don’t involve overhead reaching (too bad I’m a climber). Some of you have it much worse, I know, and are prevented from much more (including your jobs). My sympathies are very much with you.

I leave soon for a vacation down south to make up for the one I had to skip after surgery, so if I don’t respond to emails or comments for a while, that’s why. I’ll catch up when I get back.  I hope all of you out there are doing well, improving, and managing to get by all right with your SIRVA injury. Hang in there…you will come out the other side and mostly recover, eventually, I believe.

 

Talking to doctors about SIRVA

Hi folks, today marks the 1-year anniversary of my shoulder injury due to a mis-adminstered flu shot (SIRVA) which hit the bone right about where one of the rotator cuff tendons (the teres minor) attaches. I see my orthopedist again next week, am planning to request a 3rd MRI to follow up on the bone damage, and am dealing with some relapse of pain (probably from pushing it too much) after previously reporting good improvement.

I’ve gotten a lot of emails from people through this site, and I always really appreciate hearing from other folks and giving advice to the best of my ability based on my experiences. I have found that the most common thing I end up writing about to people in emails is what to expect and how to deal with doctors, nurses, and other health care practitioners who have never heard of Shoulder Injury Related to Vaccine Administration and who are skeptical that it is even a real injury. I’m not a doctor, but I am a scientist, and I am doing my best to try to navigate the world of health care as a patient with SIRVA.

This post will describe my advice for you going into your medical appointments. As always, please let me know in the comments below if you have any other suggestions or advice or would just like to share your experiences as well.

Doctor Finder

First of all, I’ve started making a webpage to collect information about doctors who ARE knowledgeable about SIRVA so that people don’t have to be afraid of seeing someone who belittles their problem or tells them it’s not possible. This is going to require your input—please submit comments (on that page) if you have a positive experience with a doctor, and I’ll add them to the map; if you have a negative experience, say so too, and I WON’T add them to the map. Check it out here.

My Experience

I know firsthand how devastating it can be when the people who should be the best equipped to help you are instead unfamiliar and skeptical. So do you guys—in the SIRVA Survey, nearly 100% of respondents have seen a doctor who had never heard of it and were dismissive. Here is my experience, in chronological order (this might be kind of boring, skip ahead to recommendations if you’d like):

  • Urgent care doctor: never heard of it, said I didn’t have an injury related to the flu shot, but gave me a referral to an orthopedist (shoulder specialist)
  • Orthopedist #1: Boy, I got really lucky here–he had heard of it AND treated several cases of it (“one or two per year,” he even said.) He ordered an MRI. But he didn’t accurately locate the injured structures in my shoulder (told me at first it was subacromial bursitis, and not damage to the rotator cuff and bone.) In fact, I think because he had previously treated cases that were primarily bursitis, he assumed it was the same, but SIRVA cases can be very different from each other.
  • Primary care doctor: she had never heard of it, but she had actually been briefed by the urgent care doctor prior to my visit and did some research on her own, and was prepared when I came in to the visit. (She’s extraordinary, I know!). There wasn’t much she could do but say to keep seeing the orthopedist.
  • Physiatrist: I chose Dr. Bodor because he was an author of a journal article about SIRVA (in fact, the first person to describe it in the medical literature, although he wasn’t the one to coin the term “SIRVA”). Of course he was quite familiar with it and my visits with him were wonderful. He’s the first doctor I added to the Doctor Finder Map. He was the one who pinpointed the location of the shot (using ultrasound), identified the rotator cuff and bone damage.
  • Orthopedist #2: When my husband went in for knee surgery, I mentioned it to the surgeon, who also specializes in shoulders. He’d never heard of it, and was quite skeptical. I actually went back to him for my own appointment later when considering surgery because he was such a hot-shot well-known shoulder surgeon to top athletes. After a 45-minute appointment in which I showed him journal articles, he came around 180 degrees to the point that I would have felt comfortable having him operate on my SIRVA shoulder. However, he had a very busy schedule and couldn’t book me very soon, so I didn’t end up going with him after all.
  • Orthopedist #3: Yeah, I know, it may seem like overkill to see so many doctors, but I am desperate to rock climb again so I will do anything for the sake of my shoulder. Orthopedist #1 also had a busy surgery schedule this summer, so once we decided surgery was the path forward, I saw #3 and ended up having shoulder surgery with him. I would consider him SIRVA-skeptical, had never treated any and had some definite gaps in his knowledge about it. Interestingly, the gaps in his knowledge may have been ultimately helpful (he “thought outside the box” when it came to the bone damage on my MRI), but there’s no way to know for sure.

The summary of all that experience above is this: I got very, very lucky that Orthopedist #1 had heard of SIRVA, because that gave me great comfort and hope, strengthened my resolve to learn everything I could about it, and made me feel less alone and misunderstood. Then, when I went to other doctors who knew nothing about it, I knew what I was talking about and could speak to them with confidence. In some cases (Orthopedist #2) I was even able to change the mind of a skeptic.

My Recommendations to You

Not every doctor, like Orthopedist #2 above, is willing and able to listen to a patient and learn something from them. It’s just a fact of life that SOME practitioners (in any profession!) have an ego that prevents them from absorbing new information from people who are supposed to know less than them (i.e., patients). Orthopedist #3 is like that. I wish you the best of luck at finding doctors who, if they have not heard of SIRVA, are ready to learn and help you. I bet that in a decade or two, every doctor and nurse will have heard of it and learned about it in school.

So here is the advice I have. In my experience (particularly with Orthopedist #2), a doctor is more likely to listen to you if you can show them medical journal articles. But which articles? You may only have a short window of time to catch their eye and get them engaged in skimming the papers. Also, not all of the papers on my Resources page are publicly available, and in some cases all you can bring is the abstract, but that is enough. So here are a couple that I would recommend you try to print and bring, along with why:

For appointments with your primary care/urgent care doctor:

For an appointment with your orthopedist/shoulder specialist:

For later visits with your orthopedist:

  • If you need to talk about bone damage, print these abstracts: Here and here
  • If enough time has passed and you need to talk about surgery, make sure your surgeon is aware of this excellent article: here

Spread the word!

Finally, spreading the word about SIRVA throughout the health care profession is very important to me. There’s no excuse for how little-known it still is, when so many people have suffered from it. It may be exhausting and emotionally draining, but please talk to your doctor/nurse/physical therapist friends and family about SIRVA, and point them to the peer-reviewed medical journal articles listed here to help them understand that this isn’t some conspiracy theory. It may help someone else out when your medical friend then sees a patient with this problem in the future.

 

Some SIRVA Survey Results

Thank you so, so much to everyone who has filled out the SIRVA Survey as of yet and into the future. Please don’t forget to update us with the follow-up survey if anything’s changed since you first filled it out. Your responses will help us understand what to do about SIRVA. My case is only one of many and I want to see if patterns emerge from other people who are also dealing with SIRVA.

So far what I can see from the Survey are many individuals with shoulder and arm pain of varying severity. Many of us have pain primarily reaching overhead but others have pain in any position, with jarring motion (like walking or running), and most people also have at least a few other motions besides overhead that are also painful (like reaching behind the back and/or pushing/reaching out in front). There are some less common symptoms, like burning, tingling, radiating pain down the arm. Some of the specific daily movements that cause people pain in the Survey are:

  • trouble driving with that arm
  • taking off a sweater overhead
  • most excruciating pain was putting on, taking off a sports bra over my head
  • reaching for seat belt
  • pushing outwards against resistance (for example, the waistband of stretchy pants)
  • reaching forward to pick up an item straight out in front of me
  • hanging from arms
  • cannot tie anything behind my back
  • put on deodorant, brush hair, wash hair
  • couldn’t “tip the can” (holding arm at 45 degree angle from body and rotate thumb toward the ground)
  • putting on my coat, couldn’t lead with my hand/arm
  • opening the gate to my backyard (the latch is above shoulder height)

Many of these that you guys describe are familiar to me as well, especially the ones having to do with dressing and driving.

The range of symptoms is understandable considering the different structures that can and do get hit in a mis-administered shot (like the different parts of the rotator cuff, the bursa space, the bone). Describing your symptoms to the doctor may help them zero in on the location of the shot and damage, but diagnostic imaging (especially MRI) is really pretty key here, and I recommend that you advocate hard for repeated imaging after a while if things are not improving based on plans made with the first one (here’s my example of why).

Also interesting to see are the places you all got the shot, who gave it, and what medical practitioners have been helpful or unhelpful in treating it. (Because I’ve gotten a lot of questions by email about what to do about it, I will soon devote a whole entire separate post with suggestions about unhelpful/skeptical/unfamiliar doctors who make dealing with SIRVA all that much more miserable.) But first, about where you got the shots that gave you SIRVA:

Shockingly many come from the primary care doctors’ offices and even the doctors themselves. I would have considered that a “safe” place to get a shot—but it’s also where I got mine and it was administered by a medical assistant. Here are the types of people who administered the fateful shots:

The most shocking story I read from a SIRVA Survey response was about three people at the same workplace who all got SIRVA on the same morning from the same person giving out the shot badly. This person wrote:

“The day I got SIRVA, 2 other people at my work got it that same morning (there were 4 different clinics at my work and us three got it from the same person). One of them got better quickly, another is a bit better but still in some pain and limited motion. Mine appears to be getting worse.”

That is horrifying. Along similar lines, though, I was in a doctor’s office when he called a well-respected shoulder surgeon at a huge medical center. That surgeon said that basically all of the SIRVA cases he had seen had been their own employees. That is, because the large medical center required all of its employees to get flu shots, as is common, the shoulder specialists were seeing the SIRVA cases among their own employees and coworkers. It’s a terrifying and sobering thought that even medical professionals (like this shoulder surgeon) can’t “get the word out” or somehow manage to get their own workplace to be preventative of severe shoulder injury among their own employees.

And then there are the statistics on which vaccine was administered for the mis-injected shot. I want to crunch some numbers from VAERS and other sources, but I think it is not a stretch to hypothesize that there are (a) rising numbers of SIRVA cases and (b) that the push to get the flu shot as widely disseminated as possible is responsible. (Still important to note that flu shots save lives.) Here are the results from the Survey about which vaccine was in the misadministered shot:

For now, this concludes this look at the SIRVA Survey data. I will get to the good stuff, like what people have tried and whether it is helping, when we get more data and patterns emerge. The problem is that most people filling out the Survey are not yet healed. This makes sense because we all go looking desperately for information (I sure did) while it is still at its most debilitating, and that’s when people found the Survey. So, please fill out the follow-up Survey. It’s not all bad news, though. Among the people who filled out the Survey who have recovered (everything but the pink pac-man in the figure below), for many of them it was in just a few months, almost all less than 6 months. That should be reassuring for many of you who are in the early stages of confirming you have SIRVA:

Well, for plenty of people it takes longer than 6 months and my website hasn’t been around long enough to capture the data from people who got SIRVA recently yet successfully recovered in 1-2 or 2+ years. As time goes on I hope to add myself to that bin. The 1 year anniversary of my shot is rapidly approaching and I’m doing better but still not feeling really close to recovered or pain-free for doing the things I love.

All about VAERS

The Vaccine Adverse Event Reporting System (VAERS) is the official CDC web reporting tool for vaccine-related problems. You should report your Shoulder Injury Related to Vaccine Administration (SIRVA) case to VAERS, but your doctor is supposed to add it, too. The post below is a bit dry, but the main message is: go over to VAERS and submit your case, or make sure your doctor did, so that the CDC can track SIRVA better.

Please also fill out the SIRVA Survey on this website, because the goals of the two are different, as described below.

Who should submit to VAERS, you or your doctor?

The VAERS brochure says, “CDC and FDA encourage anybody who experiences any problems after vaccination to report to VAERS.”

An interesting statement appears in the CDC’s Vaccine Recommendations and Guidelines of the ACIP chapter on adverse reactions: “The National Childhood Vaccine Injury Act of 1986 requires health care personnel and vaccine manufacturers to report to VAERS specific adverse events that occur after vaccination. … Manufacturers are required to report all adverse events that occur after vaccination to VAERS, whereas health-care providers are required to report events that appear in the reportable events table on the VAERS website” (note: SIRVA is on that table). So, your health care provider(s) are supposed to enter your case into VAERS, but I would be surprised if many of them know about this obligation.

While it may seem like a submission from your doctor is going to be more medically accurate than one from you, I’ve been alarmed to find so, so many errors in my doctors’ reports that become part of my medical history unless corrected. (One doctor’s notes after I saw him said, “[She] has a history of stroke after a flu injection in December 2017.” OH. MY. GOODNESS, that could not be more wrong, and I did nothing in my appointment that would give them that horrible idea. Replace “stroke” with “shoulder pain.” I have asked them to correct it, and just marvel at the inattention to detail that would produce an incorrect statement like that.)

What are VAERS data used for?

The VAERS FAQ says that the data are used to “identify unusual or unexpected patterns of reporting that might indicate possible safety problems requiring a closer look.”

The VAERS data are also searched by researchers seeking to understand SIRVA, so it’s important to either make your information is submitted as accurately as possible with your symptoms and the diagnoses your doctor has given you, and information from your testing (e.g. MRIs) if possible.

A review of the data from 2010-2016 was presented in the meeting minutes of the CDC’s Advisory Committee on Immunization Practices (ACIP) (see page 104). For example, the table below from a presentation at this meeting shows a comparison between “shoulder dysfunction” (SIRVA) cases resulting from inactivated influenza vaccine (IIV) and non-SIRVA cases in the database, to tease out whether there are differences in the populations.

From ACIP October 2017 meeting minutes.

One notable finding is that the percentage of female victims for SIRVA is 82% compared to only 69% for non-SIRVA entries. This agrees with literature reports suggesting that women are more likely to incur a SIRVA injury because of their generally smaller musculature. (Sorry, men who are in the ~18% of SIRVA recipients. It’s also pretty clear that SIRVA doesn’t just occur with smaller people – one SIRVA Survey respondent was a recreational weight lifter, and I’m sure he doesn’t have small deltoid muscles! Anyone can screw up the administration of a shot on any person, but it’s just more spectacularly incompetent to screw it up on someone with ample deltoids).

As a side note, the meeting minutes of the ACIP are pretty interesting. The ones for October 2017, February 2018, and June 2018 are presently available online. Note that the October 2017 meeting had several presentations on SIRVA while the two in early 2018 did not. Sadly, SIRVA did not appear to be on the agenda for October 2018 either, but there are a lot of other serious things for these professionals on the vaccine committees to discuss.

What else is going on over at the CDC?

I’m not ready to talk about the National Vaccine Injury Compensation Program (VICP) yet, and anyway, it’s not technically part of the CDC. But if you’ve been looking for information about SIRVA you’ve probably already heard of it and yes, SIRVA is one of the recognized causal links between vaccines and injuries.

But what I really want to know is what the CDC is actively doing to try to reduce the incidence of this very preventable injury. Are they doing enough? The CDC in 2017 appeared to be ramping up a campaign to educate the adminstrators of vaccines about the risks of serious shoulder injury from improper injection technique. I’ve written elsewhere about how I don’t like the needle length infographic in this 2017 poster they made, but at least it represents a stab (har har) at getting the information out there about SIRVA:

From the CDC’s poster

They also show the “safe triangle” for injection. Can anyone tell me if this seems too generic for all body sizes? On their picture here, the middle to bottom of the humeral head is visible through the “safe triangle.” My shot hit me in the humeral head. At the spot I was hit, using ultrasound, Dr. Bodor found the bone was less than half an inch (0.4 inch) from the surface of my skin. Does it make sense for a 1 inch or even 5/8 inch (0.625 inch) needle to be this close to the base of the humeral head (on a small person) as in the figure below? If anyone’s a doctor, please let me know what you think:

From the CDC’s poster

Coincidentally, I saw this picture in a random article in the New York Times just the other day and did a double-take:

Know the site! Get it right! (NYT photo)

Is this painting showing us the safe triangle for injection or what?! Very random.

What’s the difference between the SIRVA Survey and VAERS?

I started the SIRVA Survey because I would like to learn what works for people and how long their cases last, as well as some other quality-of-life issues, such as the response of health care providers to your injury (i.e. do people believe you?). The SIRVA Survey obviously is focused mainly on shoulder injuries, while VAERS tracks any and all problems people report after vaccinations. This makes VAERS very large and unwieldy to sift through, and it can be difficult to tease out the SIRVA-only cases (believe me! I’ve tried, and you should too!) because many do not use the word SIRVA, for example.

I was aware of VAERS when I started this and I’m definitely not trying to create a separate VAERS. When there is enough data in the SIRVA Survey to analyze the information, I intend to start presenting it here, like this early post only better. It will not be considered the same quality as survey data collected under an official research project, so nothing will ever be published from it, except here on this SIRVA website.

Even though I didn’t design the SIRVA Survey using best practices for academic research, I thought about it very carefully. For example, compared to VAERS, there seems to be no control for duplication of incidents in their system, especially since health care providers are supposed to enter your information and you may have seen several providers. In the SIRVA Survey, I’m trying to control for this by (a) only asking the actual patients to fill it out (as opposed to their doctors), and (b) requesting people to take the Follow-Up Survey to provide more information as time goes on. However, as in any self-reporting survey, I can’t necessarily control for mis-use of the system.

As far as follow-up, VAERS has an intriguing page that says someone “will contact you” if they want more follow-up information, but it’s not specifically looking for the type of follow-up information that the SIRVA Survey aims to collect: what actually helped you? This is a question best answered when you can look back on your whole injury period with perspective, and not likely to be answerable in the early days when most folks fill out the SIRVA Survey. So, please don’t forget to fill out the follow-up survey! Set yourself a calendar reminder for a year from now so your future self can come back and tell us how things are going!

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.