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.

 

Published by

admin

Hi, I'm Amy, and I started this webpage when I got SIRVA to help gather together information about treating it.

16 thoughts on “Talking to doctors about SIRVA”

  1. After completing an annual physical in October 2017 my doctor suggested a flu and Dtap vaccination and me being caught off guard I agreed, Both vaccines were administered to my left arm by pulling my collar down and me standing in the doctor’s office lobby; all three a negative. It was my first and last vaccine as it has altered my life as I knew it. Doctors are in denial and never heard of SIRVA. Prognosis 1.5cm complete tear of rotator cuff, impinged muscles and tendons, bursa fluid and a left arm I refer to as a hanger; painful range of motion and no strength. Life as I knew it pretty much gone – sleepless nights – simple procedures can’t do – and riding my Harley no longer an enjoyable past time. Those that suffer the bad jab will feel alone as your injury is not visible and nobody – especially the doctors really care – their concern is to remain held harmless. Being able to file a SIRVA claim takes the anger felt and neutralizes it; other wise a malpractice lawsuit would be justified. Without the SIRVA trust a lot of doctors and nurses would be getting sued!

  2. I hear ya. The incentive system is screwed up; the people who administer the vaccines have no incentive to do better because they’re not going to be sued for malpractice—they suffer no liability for their incompetence.

    Sorry to hear your SIRVA is so severe, and I hope you can find a good doctor who can help. There are many who can’t help and also some who, like you say, don’t seem to care, either.

  3. I am almost 18 months in since onset of injury. Vaccine was administered way too high on my shoulder. I had rotator cuff surgery almost 9 months after onset because the doctors wouldn’t believe it was from the flu shot. Said take ibuprofen and ice. It sometimes takes a few months. 10 out of 10 pain. Had to sleep in a recliner for months. Because surgery was so long after injury (and I’ve had a previous rotator cuff surgery), atrophy had set in and my tissue was thin. The surgery was not 100% – part of the tendon was not repairable. And still nobody believes me.

    1. I am so sorry Tracy! The feeling of not being believed by anybody can be somewhat relieved by eventually talking to a doctor who is knowledgeable about SIRVA—they are out there. But they are hard to find and it takes so much time and money to keep seeing doctors. I can only imagine how awful it must feel to have your surgeon find irreparable rotator cuff damage. Wishing you the best healing possible in the coming months.

  4. I am not only losing sleep because of the shoulder/arm pain, I also lose sleep because of the lack of knowledge the medical community has about SIRVA and where you can go for treatment. I did not receive a vaccine, I received a B12 shot; and immediately had a dull ache in that area. Usually, it is just that “pinch” and gone. Within 48 hours I had pain and weakness from my shoulder through my elbow and hand. All the additional pain and weakness left me questioning… what did I do to my arm that it is killing me like this?? (I never associated it to the shot) I didn’t fall, didn’t lift anything very heavy, didn’t bang it etc.etc.etc. After a couple of weeks, I went to an orthopedic group to get an x-ray; which didn’t reveal anything. A few days later I had a pre-scheduled appt. with a neuromuscular doctor for my leg. I told him about my shoulder / arm. He sent me for an MRI, which revealed the multi tears in the rotator cuff. (I have never had any shoulder injuries) He sent me to a shoulder dr. who basically identified the tears and offered a cortisone shot. He didn’t know what he was treating. (I refused the shot because I had recently started googling “pain from B12 shot ?” and discovered exactly what was wrong with my arm. I certainly didn’t want another shot in my arm; and I didn’t want someone trying to treat me without knowing what is was he was treating.) And that is where I am at ! I cannot find a doctor in the New Haven,CT area who has even heard of SIRVA, never mind treating it. I got the B12 shot on March 29, 2019. The extreme pain that I experienced for the first 6 to 8 weeks is about 40% better, but my arm and hand remain weak and the aches flare-up out of nowhere. There is a constant ache in that area where the shot was administered. I have felt that I should have been getting “treatment”, but so far can’t find someone to go to. My last statement I would like to make is, I do not believe that any of those government pay-outs that people have received for “vaccine shots” had anything to do with the vaccine itself, but it is the incorrect administering of the shot in the arm; NOT “what” was in the shot.

    1. I’m so sorry. I have been wondering if other types of shots can cause this. So far one other survey respondent also got it from a mid-administered injection that was not a vaccine either.

      I think it would change what people say in the literature about the cause and mechanism of the injury but it wouldn’t surprise me. There’s still so little that’s understood.

      I really hope you can find a decent doctor in your area eventually. A few people have been happy with Dr. Strauss in New York if that’s an option.

    2. Jean,

      I know your post is from almost a year ago and wondered if your pain has gotten better. I have been having problems since October 2020 and my pain is better but still not good. I think my pain is a lot like yours it goes from my shoulder all the way down my arm especially where I received the flu shot.

  5. I’ve had SIRVA for a little over 2 years now. It’s actually getting worse as time goes on. I filed a SIRVA claim but I’d much rather have full use of my arm again. Got a flu shot at my Drs office from her nurse. Ten minutes later I knew something was wrong. Nothing helps. What scares me is what will it be like in 5 years? Will I lose all use of my arm? Everyone in the medical profession needs to learn about SIRVA. Its not fair for people to get this and suffer with it and have no medical professional they can talk to because the medical professionals dont know anything about it. It can also cause alot of misdiagnosis. Makes me angry.

    1. I hear you, Michelle, I’d give anything to have the past 2 years back without shoulder pain.

      Yes, it is so true, I’m angry as well; the medical profession needs to catch up on SIRVA. Nothing adds insult to injury (literally) like being dismissed and having your injury downplayed or misdiagnosed by doctors who are uninformed.

  6. I’ve been suffering since I got my flu shot at the end of November. I honestly just thought I slept on my shoulder wrong. I went back to my dr. 2 weeks after the shot and he never heard of SIRVA and didn’t want to hear about it. My chiropractor has been working on it ever since and it was getting much better. Then in the past week I had a flair up and the pain is worse than ever, can’t even lift my arm above my shoulder. I’m so disgusted.
    He says an orthopedist won’t help either. I’m not sure where to turn next.

    1. I’m sorry you’ve had that experience….a lot of us have faced negative reactions from doctors, for sure. It’s the number one thing I see in the survey. I hope it starts to change as more practitioners become knowledgeable. You do want to try to find an orthopedist, but it is possible that you will run into the same reaction as the first doctor. That’s what the advice on this page is all about….bringing in the published, peer-reviewed papers to try and change a doctor’s mind…not an easy task, but I have personally seen it happen. It depends on the orthopedist’s attitude. Good luck and I very much hope you find someone who has heard of it, and if you do, please add them to the Doctor Finder so we can fill out this map:
      http://sirvasurvey.org/sirva-doctors/

      My experience with SIRVA pain was also a flare-up after a couple of months. Went from kind of “present but tolerable” to constant and very strong after a few months. I don’t know what happens physiologically to cause that, but it was the same for me, sorry you’ve had the same.

      Amy

      1. Thanks Amy, it certainly is frustrating. My chiprporator, who has helped me with many issues, also does not really seem to care what caused this. He just wants me to go 2-3 times a week to have it worked on. He says an orthopedist won’t really be able to do anything for me and that I respond well to his treatments. But I am now in pain again after overdoing it lifting some things at work this week, not even a lot or very heavy things.. The problem is, I’ll feel good and before I know it, without thinking…. I can tell I’ve overdone it. Then I’m back to suffering again.

    2. Heidi,

      I got my flu shot in October but have not been back to the doctor because after reading everyone’s responses I know the doctors we have wouldn’t know anything about SIRVA. I have pain everyday and can’t raise my arm above my head. It is so frustrating. The only thing I am thankful for is that I got the shot in my left arm.

      Hope you are feeling better, Lisa

      1. I had a flu shot at work about a month ago. I felt no pain whatsoever. About two weeks later i suffered from severe shoulder pain and also noticed weakness in my arm. My partner was massaging my shoulder and gave me a massager for my shoulder as well. As i was aiding my shoulder with the device i went down my arm and as hit the approximate needle sight i felt so much intense pain and then the penny dropped, “My problem was needle related” OMG, i thought. I researched effects of immunisation and lo’behold i found “SIRVA “. I am a nurse and i know the immunisation that was administered i has damaged the use of my arm . SIRVA is real but nobody has heard of it or wants to know about it. Thats the nursing world these days!

  7. I had a flu shot at work about a month ago. I felt no pain whatsoever. About two weeks later i suffered from severe shoulder pain and also noticed weakness in my arm. My partner was massaging my shoulder and gave me a massager for my shoulder as well. As i was aiding my shoulder with the device i went down my arm and as hit the approximate needle sight i felt so much intense pain and then the penny dropped, “My problem was needle related” OMG, i thought. I researched effects of immunisation and lo’behold i found “SIRVA “. I am a nurse and i know the immunisation that was administered i has damaged the use of my arm . SIRVA is real but nobody has heard of it or wants to know about it. Thats the nursing world these days!

    1. Hi Adrienne, thanks for the comment and for the perspective on the nursing world. Yep, that matches my experience talking about SIRVA with friends in the medical community and with my own doctors and nurses!! “Getting the word out” is a really important step here and is so difficult when there is backlash and immediate assumptions made when a vaccine injury is brought up by somebody. It was hard for me to talk about it but I felt it was always very important to have a conversation about it to anyone in the medical community so that they might be made aware, and to root the conversation strongly in the peer reviewed medical literature and CDC acknowledgement of SIRVA as a causally related injury following misadministration of vaccines. Best of luck to you!!

Leave a Reply to Tracy Cancel reply

Your email address will not be published. Required fields are marked *