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Standard shoulder replacement CRPS, Anyone else burning and pain post OP TSR with blisters?

Discussion in 'Shoulder surgery recovery area' started by DeannaTA, Mar 28, 2019.

  1. DeannaTA

    DeannaTA new member
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    Please forgive me if I don't do this right, I'm a total newby.

    I'm 35mo post OP to a "simple" little total shoulder replacement at 49yrs old, bone on bone arthritis. I have had many surgeries over the years, but nothing like this.

    I woke up post OP knowing I was burning. I had elected a nerve block, and was assured I would have good pain coverage. I didn't hurt, I burned. I complained as soon as I was able to form the words, and I did so repeatedly over the 1st hours following post op, but nothing was ever done for me. I was told pain was normal following a TSR. At 4 days post op and now at home, I couldn't stand it, and my husband called the on call surgeon (it was Sunday). He was instructed to take the dressings down, where he found red, burned, hanging blisters, in the form of the dressing. They had also applied an Aquacel pad (generally used for burns). When I saw the surgeon the 5th day, he was shocked. I have no prior Chlorohexidine allergy, but recently had a patch test with a highly deluded mix and reacted positively. No one can explain to me what happened. I now have Chronic regional pain Syndrome with muscle dystonia and chronic spasm. 1000x worse than my bone on bone pain. Would anyone have a half a guess as to what could have happened. It seems had they listened to my complaints early on, I certainly would not have suffered as I did, and now be left with a nearly nonfunctional arm.

    Deanna.jpg

    Thoughts? Please?
     
  2. Jockette

    Jockette FORUM ADVISOR Forum Advisor

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    Oh my, that looks so painful. I’m so sorry!

    I am going to tag @Josephine
    our forum administrator and nurse director to address your concerns. She has many years of experience with joint replacement and she’s the best!

    Please give us the date of your surgery and we’ll make a signature for you.
     
  3. DeannaTA

    DeannaTA new member
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    Thank you! I appreciate your kindness and help. My surgery was 4/28/16. I'm sorry, I'm not sure what making a signature is. Again, thank you!
     
  4. Celle

    Celle FORUM ADVISOR Forum Advisor

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    Hello @DeannaTA . I'm sorry you had to suffer that. How is your skin now?

    I've moved your thread from the shoulder pre-op area to the recovery area, since you've had your surgery.
     
  5. DeannaTA

    DeannaTA new member
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    Hello! Thank you for fixing that, I am just learning the forum.

    I have Chronic regional pain Syndrome as my take away. I have nerve pain, prickling, burning, and changes in skin appearance when in water, and random temperature differences one arm to the other. My bicep is in constant spasm, as well as my shoulder blade. I am very, very swollen, which makes my arm heavy. I am unable to raise my arm, extend out to my side or raise to my face, it trembles with muscle weakness. I can hardly stand to be touched. Even the wind on me, clothes touching me or the sun are awful. I just wish I understood what happened. Thank you, for your kindness.
     
  6. Jamie

    Jamie ADMINISTRATOR Administrator

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    Oh my.....how horrible. I'm so sorry this happened to you. #CRPS can be a rather difficult condition to treat, as I'm sure you know by now. What doctors are you seeing for this condition and what treatments are you on or have you tried?
     
  7. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    DeannaTA,
    You may want to put together a team of people to address your #CRPS, unfortunately it is not as simple as finding a pain clinic.
    Find a counselors specializing in pain, you will probably have to call and ask about their advanced training in treating CRPS.
    Find a PT who has taken classes about pain science from the International Spine and Pain Institute, ideally they should be certified. There is a directory of practitioners on their website.
    Find a MD to help with medications and non invasive treatment.

    They can as a team help you understand how your nervous system and brain work together, and how CRPS develops after injury/surgery.

    You may want to take a look at the Curable app for chronic pain, they also address CRPS. You can also find them on the web at curable health.
     
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    Last edited by a moderator: Mar 29, 2019
  8. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    It never ceases to surprise me how ignorant staff can be about these (to me) simple issues. This is quite clearly an allergic reaction to the adhesive on the dressing. I have had similar reactions to as simple a thing as Steri-strips where I got two very neat lines of blisters down either side of my wound.

    close up blisters.jpg

    I suggest that you get some antihistamine cream prescribed to gently and thinly apply to it. DON'T break the blisters. Keep the wound covered with soft, clean, sterile gauze dressings and failing any other option, secure it with sellotape.
     
  9. Jamie

    Jamie ADMINISTRATOR Administrator

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    @DeannaTA .... you'll notice that Jo gave some information about how to treat a severe blistering like you had with your surgery 6 years ago. That information, while not something you need at this point, may be helpful for others who may have a similar situation.

    As for dealing with your CRPS, Pumpkln's suggestions are right on target. If you haven't recruited a whole team of medical experts to help you deal with this condition, that would be a good step forward. As I mentioned, CRPS can be difficult to deal with. Many times there is a lot of trial and error to determine treatments that help and give you a more functioning limb.

    We have had members who had this condition. In fact, we have made #CRPS one of our BoneSmart hashtags. So, you can search for posts dealing with it by searching for the hashtag or just by clicking on the link here in my post. When you click, it will bring up all the posts containing that hashtag.

    I might suggest that you alter the title of your thread to reflect the CRPS rather than the rash that was years ago. Some of our members search the titles for topics they are interested in and you may get more responses this way. If you'd like to make that change, just post what you'd like the new title to be and one of the staff members will get it changed for you.

    I know all this must be terribly frustrating for you. You are always welcome to post specific questions or concerns here. We'll try to get you as much information as we can to help. And, even if you just want to vent a bit, we're here to listen as well. You are part of the BoneSmart family now and we care about you.
     
  10. DeannaTA

    DeannaTA new member
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    @Josephine @Jamie @Pumpkln Thank you all for your responses.

    I am most curious to know if anyone out their suffered a reaction like mine, and how they would have discovered what happened. Is it acceptable to think my initial post OP complaint would go unaddressed, and considered that burning is normal? It's documented that I complained, should they have listened somehow? Did 4 days like that make it worse?

    Could it be the Chlorohexidine?

    @Josephine, my skin has "healed", this was 3yrs ago (next mo.) My biggest question is what could have, or did happen?

    I live in a rural city, closest major medical care is an hour away. Because this happened there, I can't be treated there, which leaves me minimal to no resources. I do go to PT, but it is a struggle, very painful and discouraging. I have had 7 stellate ganglion blocks. Next step is a nerve stimulator, which I am resistant to for fear of spreading. I take no pain pills, and manage the best I can. I am working on referrals for counseling services. I have seen 4 orthopedics, 2 pain management, 2 family clinic, 3 PT and 1 dermatology. I'm waiting on a neurologist referral.

    So, I'm really just searching for anyone who experienced anything similar, whether it was discovered immediately, or it was delayed in its discovery. What, or who helped you to figure out what might have happened.

    I appreciate everyone's thoughts and suggestions. Truly. And without really understanding how this forum works, I think I would be most interested in other reactions like mine, over finding other CRPS cases.

    Thank you!!!
     
  11. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    DeannaTA,
    We have members who have had an allergic reactions to the tapes and adhesives used in surgery, with a similar response. Have you been tested for other allergies? Has a metal allergy been ruled out?

    CRPS is a complex diagnosis, it can begin with a simple cut on your finger, toe etc, up to the worst injuries possible.
    It is a reaction of your nervous system to injury.

    The curable app might be a great resource for you, they have a free trial.
    https://www.curablehealth.com

    Click on the this hash tag and you will be taken to posts about #CRPS.
     
  12. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Sorry, my sphere of expertise does not extend to dermatology or neurology.
     

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