A new treatment plan

Northern California is beautiful

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

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

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

Step 1: Identification of the Exact Site of Injury

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

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

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

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

Step 2: Make a Plan

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

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

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

Step 3: Injection

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

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

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

Step 4: Assessment

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

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

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

Sunset run at Bodega Bay

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

26 thoughts on “A new treatment plan”

  1. I live in the UK , and just had my flu jab at work ( I work in the NHS) in October and have suffered ever since

    There is no one in the UK proficient enough to help . I feel I will be stuck with pain for life

    1. I am so sorry Karen, if you do eventually find someone in the UK who IS helpful, please add their name to the Doctor Finder page (http://sirvasurvey.org/sirva-doctors/) for the inevitable case where someone else near you needs to find someone.

      I also had a lot of deep fears about the pain being the new forever state, but take heart in knowing that for most people it does eventually resolve. For me I had lots of pain for months that didn’t improve and finally surgery at about 7 months out, but you may also heal without surgery depending on what has been damaged. If your rotator cuff or anything has been partially torn or torn by this, at least it would show up on an MRI and an orthopedist (regardless if they know about SIRVA) would want to fix it. GOOD LUCK and I hope you can find some good advice eventually. It is really tough to have a condition that many doctors are unfamiliar with/outright skeptical/even hostile about.

  2. Flu shot in my shoulder
    I had a flu shot on 10/30/3019. The nurse used the alcohol wipe on my shoulder. I asked her if she was doing my flu shot in my deltoid. She said yes. She then inserted the needle & immediately I had severe pain from the front of my shoulder almost to my elbow. I looked & she had injected high on my R shoulder. When I left w my bandaid on, a woman I did not know came up to me & said, “I hope that bandaid isn’t where you had your flu shot as it is too high. It is into your shoulder. I hope you don’t have problems with that!” I asked who she was. She said she was a pharmacist & gave flu shots every day. She reiterated that mine was too high.
    Within hours, I could barely move my arm where I had received the flu shot. Now, three weeks later, I am still in pain. I cannot get clothing off over my head as it hurts my arm too much. I wake up all night due to the pain in my shoulder.

    1. Hi, Thanks for the detailed description of your incident. That is very interesting that someone mentioned to you right away that the shot was too high!! I hope your shoulder ends up getting better quickly, despite the intense pain you are in right now. Some SIRVA cases do, depending on what the shot hit and how your body and immune system react to it. Some cases take longer. It is hard to know (my doctor who had seen this before thought my shoulder would be better in 3-6 months—it is 2 years and I’m still having trouble). Fingers crossed that you are in the faster recovery group.

      Best,
      Amy

    2. I am in exactly the same boat as you! It has been over 2 months for me. I am likely going to have to get an MRI or ultrasound image. This is so unfortunate and avoidable. Daily life and functioning have become miserable.

  3. I too have had chronic pain in my left shoulder after receiving the influenza vaccination in mid October 2019. The injection site felt high on my shoulder the day I received it and I have had chronic pain from the site radiating down my arm, as well as to my neck and upper back. I also experience sharp pains during left arm abduction and front raise movements. I work at a hospital and the nurse I work with got the vaccine as well. We both felt that the injection was far too high. I contacted the pharmacy manager at the hospital that I work and he said that there have been no other complaints. I am a healthy middle aged woman. I work out regularly and teach a group exercise class 1 evening a week. The pain from this injection has set me back and has inhibited my energy, mood, as well as my movement. I feel that the pain and movement restrictions are progressively increasing and it has greatly inhibited my sleeping. I read your article and just wanted you to know that I appreciate the information and confirmation that I am not the only one in the world that is experiencing this.

    1. Thanks for the note. I am so sorry you are going through this as well. The dismissiveness of other people (“no one else is complaining about the shots we gave”) can be so dispiriting.

      Since it has been about 2 months since your shot there still might be hope that your pain resolves early (within the first 3-4 months). That happens in a number of cases, depending on what the shot hit and what the reaction is like. I hope very much that you have your shoulder back again soon and can go back to teaching your class and your normal exercise routine. If not, please don’t hesitate to reach out for more resources.
      Best,
      Amy

    2. Follow up to my comment: Ironically I have gone through airport security twice since my flu injection and both times the body image showed a yellow area in the injection site. I believe it detected the fluid buildup in my shoulder. I read that TSA scanners emit Millimeter waves that can penetrate clothes, but they bounce off skin and any concealed liquid or solid objects to detect metallic as well as non-metallic materials. Therefore, it can detect such things as cysts and hernias. I feel it detected my injury. My next step is to contact a specialist and complete a VAERS form.

  4. Do anyone know of any doctors that specialize in SIRVA in Maryland I’m experiencing the same exact issues as others and going to PT , which by the way is not working.

  5. Had flu shot in October of 2018. This is all to familiar. Had two rounds physical therapy and last December arthroscopic surgery and currently on post op pt. Still frustrating and not certain my doctor is understanding of this all. The physical therapists have all been much more understanding as they are seeing the results but perplexed as to how to help. Looking for possibly second opinion but have no clue where to look for doctor In Tennessee who has knowledge and understanding.

  6. I received my flu shot 2 days ago by a pharmacist and it hurt so much. I felt tingling down my arm all the way to my hand within 1 hour. The injection site is very high. Very worried it will only get worse. Did you start feeling pain right away? Was your shoulder/arm swollen?

    1. Sorry you’ve experienced this and are understandably worried. I felt more pain than a usual flu shot immediately, yes. But they say give it a week or two weeks before getting very worried about persistent SIRVA pain and/or damage. You might still be okay. That said there’s new research showing a cortisone shot within 5 days was beneficial for two SIRVA patients. Too soon to tell if that’s a hard and fast rule though that cortisone immediately can “prevent” SIRVA. My guess is it can’t, but I don’t know. It’s unlikely you’ll get to see an orthopedist in the next couple of days who could make that call defensibly, but you could always try. Typical advice would be wait 2 weeks and if it’s still hurting go see an orthopedist. Best of luck to you. I hope it’s not anything serious.
      Amy

  7. I had a tdap shot with horrible pain for months. On mri ortho could see big inflammation but shot didn’t hit bone. I am still dealing with agony. Know of anyone familiar with all this in kansas city area?

    1. I haven’t heard of anyone in Kansas City, yet; the “doctor finder” page is so far the best record I have collected of doctors who are familiar with SIRVA and/or helpful to their patients:
      http://sirvasurvey.org/sirva-doctors/

      I’m afraid there’s no one in that area on the map yet, so I would try to get recommendations in your community for the best shoulder orthopedist and go from there (tips for first appointment with an ortho who you don’t know are here:)
      http://sirvasurvey.org/talking-to-doctors-about-sirva/

      If you find somebody good, please help us fill in the map by sending me their name!! Best of luck, I hope you find some relief and good help.

      Amy

  8. My flu shot on October 25, 2019 was injected too high. I have just stopped taking ibuprofen every day (which I learned I was not supposed to be doing). Now the pain in my arm is unbearable and I cannot lift any weight with it. What should my next step be? Thank you.

    1. Hi Jenny, sorry you’re in this boat too. I think the guidelines about not taking NSAIDs are open for interpretation on the current state of research about that—I would definitely talk to your doctor. Even something I wrote a couple of years ago that was the opinion of practitioners I spoke to, may not be the best course of action generally (I don’t know if stopping NSAIDs actually helped me or not, in the end). So I hope you can find somebody good to discuss the pros and cons of pain management through NSAIDs with. I had the same experience as you—that going off NSAIDs (naproxen in my case) left me in pretty much unbearable, constant pain, which made it hard to work and concentrate.

      1. I’m sorry I don’t have a quick answer for recommended next steps but definitely the best would be a return visit to your doctor; it’s been 8 months and you’re not better so new options should be discussed. I wish I knew what would “cure” SIRVA in all cases the most effectively, but at this point we’re still left with going to the best quality orthopedists we can and hear what they recommend for our specific cases. The problem is too many of them are unaware/skeptical/unwilling to learn more.

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