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Thread: Injection site reation saga

  1. #1

    Default Injection site reation saga

    Hello All!

    Just checking in to share some cheery news - Not.

    I decided not to continue this topic in my Tecfidera thread.

    Saw surgeon again yesteday. He confimed what I suspected, Rx ointment wound care surgeon gave me 2 wks ago has not helped at all and site reaction "wound" is not healing. I need surgery again - much more extensive this time.

    Initial debridement surgery left me with a whole in my rear about the size of a pingpong ball. This time surgeon put thumbs and index fingers of both hands together to form an ellipse shape which he estimates to be the outer dimensions of the new surgical hole which he now says needs to create to be sure to get to viable tissue. He didn't say how deep and I didn't think to ask. I suspect surgeon would tell me he doesn't know how deep. Last time he said he had to go deeper than he anticipated.

    I am to see plastic surgeon on Wed. Surgeon told me in large part this next surgery depends on what plastic surgeon says he can do [my BMI is 16ish]. Back in 2009 when I had serious site reaction on my arm, I was sent to same plastic surgeon for consult and he said there wasn't sufficient tissue to do anything.

    This time, I don't think plastic surgeon is going to say they can't do anything. Instead, I expect his recommendation is going to be some pretty awful surgery.

    As soon as I have seen the plastic surgeon, I will leave town for my consult with Neurologist at MS Center. Initial reason for this consult was for MS treatment decisions. I suspect this active injection site reaction will further complicate that topic.

    At least I am very grateful that I am rather symptomless when it comes to my MS - just being eatten alive by the treatment. To think I haven't had a B shot since last September!

    I may not be back here for a couple of weeks. Thanks for "listening".

    Best wishes to all for a good weekend,
    lawnerd

  2. #2
    Distinguished Community Member agate's Avatar
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    Here's hoping that this surgery will fix the problem, lawnerd.

    Since you must be quite lean, it's probably really important to keep up good nutrition at all times so your body can help to fight off the infection and heal. I've heard that nutrition makes a huge difference in healing.

    You've asked these docs about alternatives--and there aren't any? Sometimes surgeons don't always think outside the box unless they're specifically asked to do so and they act as if surgery is the only available answer when it isn't.

    You've probably dealt with all this many times over already.

    You don't say when or if the surgery is going to be, but whatever happens, I hope it will work for you. This sounds like a very miserable experience.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #3

    Default

    Thanks all.

    Jeannie Z, I am familar with the honey from the 1st and, until now, worst site reaction I have had. Didn't seem to work that time for me. But from what I have read and had elder care nurses tell me, it often works. There is a trick to it though, some say only one type of honey works. Sorry, I can't recall what type of honey that is. Quick online search would provide that answer if someone is interested.

    Agate, thanks for all of your insight and feed back. I eat so nutritiously that it is disgusting. Some years ago, post heart attack, while in heart unit at hospital, I had friends bring me food - salad, broiled chicken, etc - because what I was served in heart unit was so unhealthy and unappealing to me. Docs agree that I don't have a systemic problem that is preventing/hindering healing. It seems to be the Betaseron. For instance, surgeon commented that my skin was healing just fine, it is the internal tissue which is the problem at this point.

    Yes, I am trying to think of alternatives to this second, more serious surgery. I am wondering if surgeon isn't at least being a bit extreme about the amount of me that needs to be cut out.

    Meanwhile, I am trying wet to dry loose packing of wound which seems to be doing a teeny tiny bit better than the Rx the wound center surgeon gave me for debridement. That Rx did nothing. But I'm not knocking that doc. I know from experience that the various techniques, Rx's, etc work sometimes and don't work other times. Even the best wound center folks just keep trying different things until something works.

    Man is healthcare a rip off. I was running out of bandage tape and bought a roll today. It was $20 [cheapest brand offered] - for fancy, wide adhesive tape!

    Have a good week,
    lawnerd

  4. #4
    Distinguished Community Member nuthatch's Avatar
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    Hi lawnerd,
    Sorry to hear that you're facing surgery due to site injection problems. I remember another member who had lots of problems with that years ago. Hope that the docs can resolve the problem soon.
    Good luck with the surgery and healing. Let us know how you're doing.

    Joan, aka cheers
    Last edited by nuthatch; 06-24-2013 at 11:27 PM. Reason: can;t spell, DUH!

  5. #5

    Default

    Mostly good news - I think.

    In past 3 days, I have seen my general surgeon [as explained in earlier posts], my general dentist, an oral surgeon, a plastic surgeon, and an MS specialist [4 hours away - one way].

    In midst of my MS stuff, I lost a crown/tooth at the gum line. Had previously had a root canal in this tooth. Am looking at surgical extraction of remainder of tooth and roots combined with bone graft. 3 -4 mos later, 2nd less involved surgery to implant post in jaw bone. Then, a week or 2 after that, a new crown. All total about $5,000 -6,000 - yuck!

    Back to the MS stuff -

    Plastic surgeon said absolutely not, he will not, cannot, do skin graft or flap in conjunction with a major surgical debridement [maybe 12+ sq inches]. He says it is totally not appropriate for me/ my site reaction situation. He said I would be laid up for weeks to recovery which would be very problematic.

    Plastic surgeon said I am not appropriate candidate for a skin/tissue graft from another part of my body because I don't have enough skin and fat anywhere else to donate and it would cause big problems at both donor and graft sites.

    He thinks area is healing even if doing so extremely slowly.

    He said maybe, maybe, in 3 - 4 months, if actual "wound" as well as surrounding tissue is vastly improved/ healed he would consider a much smaller flat graft procedure.

    Plastic surgeon also said if need be, I could just live with current open wound all my life, keep it clean and dress it every day. He said this is not uncommon particularly with the elderly [ as opposed to 50's otherwise healthy me.] Surely, it will not come to that. I guess this former lifeguard won't be doing any more swimming any time soon, if ever.

    Plastic surgeon agreed with me that because of wound location [which I cannot see well even using a miror] that I ought to have some Dr. take a look at it every few weeks to make sure to catch it if something problematic develops.

    MS specialist -- I liked him, seems to really know his stuff. As far as site reaction, he said it is healing and to leave it be.

    MS guy said I must resume treatment for my MS, even if it means I stay sick 99% of the time. He said, despite seeming lack of disability, I have too much on-going brain atrophy not to treat.

    He agreed that I can never take any injectable treatment again. He also agreed that of the 3 new oral meds, only one I should consider is the newest one - Tecfidera. [Guess this means I will be taking furniture polish or whatever stuff it was that someone says this drug is derived from.] He says Tecfidera is more gentle on the immune system than the other disease modifiers so maybe I won't get sick as much while taking it.

    He gave me literature to read on the Tecfidera. Once I have read it, I am to call him to get prescription started.

    I am going to be interested to see how my general surgeon reacts to plastic surgeon's opinion. He is who referred me to the plastic guy and presented referral to me as if plastic guy would be driving the boat. When general surgeon gets this info, I strongly suspect he will drop me like a hot potato. If so, my GP can/will follow me.

    That's all folks. Thanks for listening.

    lawnerd
    Last edited by lawnerd; 06-27-2013 at 03:28 PM. Reason: hit post by mistake

  6. #6
    Distinguished Community Member agate's Avatar
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    lawnerd, I'm guessing here but doesn't your GP know you better than the surgeon? There's a lot to be said for trusting the docs who know you best, I think--usually the ones who've known you the longest.

    I hope your medical and dental problems are getting careful management. It sounds as if you're seeing to that though you must be tired just from seeing all of the various medical professionals. Maybe time will be your friend and you just need to wait a while for healing.

    Dental problems like yours probably aren't helping the healing process. I hope you can have them taken care of with a minimum of misery.

    I've sometimes reminded dentists and oral surgeons that I have MS, and I'd appreciate it if they'd do whatever they could to make the procedures easier for me, including how I'm positioned in their chairs and not trying to do too much dentistry at once.

    Dentists don't always look at your medical history. If you've had a reaction to an anesthetic, it's a good idea to mention it.

    That $5,000-6,000 figure for the dental work doesn't surprise me. Can anyone truly afford dental care at these prices, I wonder?

    There should be light at the end of this tunnel soon for you.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  7. #7
    Distinguished Community Member Lazarus's Avatar
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    Default Hello again

    Thanks for the detailed update. I don't know if you remember but I had a super bad reaction tobetaseron after12 years. There was a large hard abcess in my stomach and the surgeon did two procedures. the wound would not heal and eventually landed me in the hospital for two weeks with a wound that developed gangrene. It is many years later now but I do have two belly buttons now...the surgery left a site that looked like a belly button.

    I am sorry you are having so much trouble. Exhausting, isn't it?

    You are one strong woman!
    Last edited by Lazarus; 06-28-2013 at 05:22 AM.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

  8. #8
    Distinguished Community Member renee's Avatar
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    Sheesh that is a saga.
    It's beyond saga, it's MS mythology except you are not being slaughtered or knocked up by the gods-
    just smacked about by specialists.

    I used to know a lot about apitherapy and bee product related naturopathic remedies.
    Something like unpasteurized honey with all the queen bee food etc in it comes to mind.

    Now it is time to sound insane but if a reputable M.D. suggested maggots to clean out dead tissue,
    I would go for it.
    M's have reestablished themselves as legit and so have leeches.

    Back to 16th century!
    My mom would have me floating in salt water 4 hours a day.

  9. #9
    Distinguished Community Member agate's Avatar
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    Well, speaking of bees, and this may be getting way off the topic in this thread, but bee venom therapy is still going strong. This man with MS has a very devoted sister who is willing to sting him 30 times a day, several times a week, with bees:

    http://www.khou.com/news/health/Texa...213940391.html

    I was wondering how she managed this without getting stung herself but the video makes it clear.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. #10
    Distinguished Community Member SalpalSally's Avatar
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    Thanks Agate, but, having a bee phobia, I'm not watching your video.
    Love, Sally


    "The best way out is always through". Robert Frost







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