2.5 year SIRVA update

How are you all doing? I’d like to start publishing some of your shoulder injury related to vaccine administration (SIRVA) stories because I think mine is getting boring: better! worse. better! worse. better…? Please email me if would like to write a post for this website. My preference is that you be at least 1-2 years out from the shot so that your post can cover more of the arc of your whole experience rather than the initial symptoms (which are horrible).

An update on my progress has been a long time coming because I was in a deep regression (details below), and honestly, it depressed me too much to write about it during that time. But I am on the upswing and in a better mood lately. Here:

Recovery Mistakes

I wrote here about what caused me to go backwards rather than keep improving after surgery in July 2018. To clear, the original surgery (debridement, bursectomy, irrigation, PRP) was a success, I think, and I was recovering very nicely and climbing again in the spring of 2019. Rehab mistakes and doing something stupid (carrying something too heavy than my shoulder was ready for) is what set me back an entire year. Don’t do that.

After reinjuring my SIRVA’d shoulder I tried to rehab with PT and it was going nowhere. I went on a long-planned trip to Spain and Sardinia and only climbed stuff that was relatively easy for me.

Eventually it seemed clear that a second surgery on my SIRVA’d shoulder was the likely correct choice. This surgery was different. It was a biceps tenodesis (which some of you might also end up with during a SIRVA surgery, depending on what the doctor finds in your shoulder; it’s a common procedure). I asked the surgeon to look for signs of SIRVA related damage and he reported that things looked good around the bursa and likely site of SIRVA injury where the teres minor attaches to the humeral head.

Before surgery I also spoke with Dr. Bodor in California and he offered a second opinion, which is that it was possible that the regression/reinjury was still more related to the primary SIRVA damage, and that a second surgery might not be addressing the right cause. He could be right (I don’t know yet) and if I lived closer to California I would probably have gone to see him as he is trying a less invasive treatment on SIRVA shoulders (will say more later). If you are anywhere near northern California, please consider seeing Dr. Bodor, I think he is extraordinary; he was the first to publish a paper in the medical literature on SIRVA, and he continues to publish on it and has a deep interest in helping SIRVA patients recover.

My surgery was February 20, 2020. In-person postsurgical physical therapy was interrupted by Covid-19, but nonetheless my recovery is going extremely well (KNOCK ON WOOD). I do my PT at home while FaceTiming with the therapist:

Tomorrow will be four months post-surgery. In the next few months I will know if the surgery was successful, or if lingering SIRVA damage continues.

My next post is going to cover my experience with the VICP and legal aspects of a SIRVA injury.

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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.

10 thoughts on “2.5 year SIRVA update”

  1. Hi Amy, I would be happy to share a story. I am about 1.5 years out and have only been doing PT and had one steroid injection into my shoulder. My physical therapist and I have been tracking my progress since July 2019 and I have been making great progress. Moving from 90 degrees ROM to 155 ROM right now. That last number is a guess because I am having to do PT at home via zoom meeting.

  2. Hi Amy,

    I am still on my SIRVA journey. I’m 10 mos post vaccine and I am in the process of discussing my next options (arthroscopic surgery etc). I’ve seen 7 Drs. I’ve had 3 MRIs, 1 EMG, 5 mos of physical therapy, 2 rounds of prednisone, 1 cortisone shot and the journey continues.

    I cannot thank you enough for this. I have made references that I wish anyone affected by sirva could have a support group. I wish I found this when it first happened to me but I am so glad I found this now.

    No one understands unless you’ve lived with it.

    Thank you…

  3. Hi Amy, I live in Californian and am considering a tenex procedure with Dr. Bodor. Can you talk about your experience with this procedure. Did you get relief? How much and for how long? Any adverse consequences.
    Thank you so much for you help!

    1. Hi Tracy, I saw Dr. Bodor before he had developed the Tenex procedure, and then had to make the decision (once he had started developing it) whether to fly back to CA and get it OR get surgery locally. I went with the surgery, so I’ll never know if it could have been avoided with the less invasive procedure. So I have no direct experience with the procedure myself, but it sounds like he has had great results. Here is the peer-reviewed article Dr. Bodor wrote about his patients’ experiences: https://www.sciencedirect.com/science/article/pii/S2405844021025457

      Good luck with your choices, it is a difficult decision. If I was closer to CA I might have decided differently.

    2. I have just returned from California and had the tenex procedure with Dr Bodor 5 days ago. I would love to share the process and the outcomes a long the way. I went into it very anxious and not knowing what to expect. I am early in the recovery phase and am hopeful for the first time since being SIRVA’d 10/19/21. As previously stated, Dr Bodor and his staff were outstanding! If you’re interested, I will happily continue with the Dr Bodor updates.

  4. Thank you for your response Amy. I’m also wondering if you might have or be able to point me to any information about a particular SIRVA reaction that I’ve had. Not long after getting my SIRVA I developed widespread body pain. Dr. Bodor thinks the trapped vaccine might be acting like a foreign body and triggering a body-wide immune overreaction. I’d love to know whether this has happened to other people. Have you come across any accounts of this in your research or in the survey responses?

    1. Hi Tracy, I know this is an old comment but I believe this has happened to me too. Did you end up having the Tenex procedure? How are you doing now?

  5. I am 1.5 years into my journey and getting ready for the surgery. The cortisone shot a year into my journey gave me a blissful 3 months when I forgot all about the pain and my hyperflexible arm (am double jointed) regained 95% mobility.
    However the pain started creeping in again , though the range of motion is still great. I think the PT exercises during my pain free 3 months helped. But I am a very active person and can’t go back to those painful days again. So surgery in a month! I’ll update once that’s done! Thanks for this blog!

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