After an agreeable 2 weeks in the south of France – where an unusual large yellow disc appeared in the sky on most days (not seen in UK since one day in March 2012) –  it made for a very pleasant break indeed.

Here is the hand shortly after its holiday in France – you can’t fail to notice the exuding protrusion caused by accidentally catching the scab covering it on some shopping packaging, but otherwise getting better:

Image

Left hand index finger - showing sinus on upper part of finger
Left hand index finger – showing sinus on upper part of finger

3rd May – an appointment with Infectious Diseases and a meeting with the only member of the team I had not yet met – in fact, he was the doctor who devised  my antibiotic drug regime. Again, two medical students were present and an in depth discussion took place about my current health. As I had just returned from holiday, I was feeling quite positive and the finger in question seemed to be reducing in size, albeit in parts of a millimetre. He was able to explain the results of the MRI scan, and was sure there was no damage to the bone at this stage. However, he was concerned that the antibiotics were not acting quickly enough due to the nature of the organism – ‘they were only nibbling away at the edge of the infection’ – and something more radical needed to be done … i.e… MORE SURGERY!! I had half expected this would happen eventually but when I asked how soon (hoping for a few more months grace) his reply was: ‘Next week, ideally!’ Apparently, because the drugs can’t get through to the centre of the infection for some time yet, the organism is likely to carry on eating away and could cause permanent damage to the tendons and bone. I had been warned I would never get my finger back to normal ever again, but they were hopeful I could get much improved movement from it eventually. Consequently, I was to be handed back to the Orthopaedic Department to look into the possibility of further surgery.

I returned home with  a heavy heart, but resigned to the fact that my health must come first. I had looked forward to at least a summer of almost normality, such as driving and carrying out odd jobs around the house that could be managed with one-and-a-half hands, though with open ‘sinuses’ I still could not get it wet.

My next appointment – with Orthopeadics (hand surgery department) – came through within 24 hours and by the time the date of 7 May arrived I had put together a convincing argument that surgery could wait till after the summer! This was the first appointment with the NHS where they let themselves down – hopefully just a blip on an otherwise perfect experience so far. After keeping me waiting 1 hour and 20 minutes I was called in to meet a consultant who had never met me before and did not have any of my notes. I gave her a swift resume and she was of the opinion that it would be best to operate sooner rather than later, but as this was not her area of expertise she needed a second opinion. With no one else in the surgery to ask and no one answering their phones, and with profuse apologies, I was told to return the following week when the Senior Consultant would be on duty. One useful thing from the meeting was that I was able to view for the first time my MRI scan on her monitor, and it was clear to see the amount of infection surrounding the lower and middle joint of the index finger. Other detail was not easily seen without an expert eye.

14 May – Another week on and I was back in Orthopaedics for an appointment with the chief surgeon. She was very clued up on my case and had experience of working with similar finger damage. After a thorough examination she came to the conclusion that it would be advisable NOT to operate just yet (HOORAY!!). She was sceptical about my suggestion of leaving it till after the summer, and wanted to see me on a monthly basis in case things changed … for the worse. I had to make sure I always saw her at future appointments and ask for her if I needed to visit the clinic urgently, as she wanted to monitor me herself, for the sake of continuity.

… And so I skipped happily out of the hospital knowing I would not be returning the next day for an operation. Meanwhile, I was told to exercise the finger every hour using passive physio to get the finger moving again. So I have been using my other hand to bend it regularly every day since, and already I do seem to be able to bend it slightly more than before. Left hand piano playing is still quite rubbish (no change there then … ha ha!) but with a bit of effort the finger is now touching the keys … watch this space. The sinuses are shrinking gradually and oozing less than they were a month ago … so all in all, I’m quite hopeful of slowly getting more use back, though I’m resigned to more surgery eventually,

Thanks to those who have been enquiring about my progress. I’ll keep blogging all the time there is something to tell you. This is not going to go away any time soon.

 

 

deglasson Avatar

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11 responses to “MY LEFT HAND – Episode 13 – Home again!”

  1. babssmith1945@hotmail.co.uk Avatar
    babssmith1945@hotmail.co.uk

    Dear David I’m glad you seem happier about the hand it still looks very poorly to me but not as it was before. I’m just glad it hasn’t dampened your enthusiasm or your faith in doctors. Have some champagne it always does the job for me and there will be lots when we get to Philip’s. Glad you are still healthy and well. Love Babs xx

  2. fishtanx2011 Avatar

    Hello David,
    Several weeks ago I sent you a Facebook message regarding the Mycobacterium. Sine we are not Facebook “friends” the message went to your “other” box. If you have time please reply, I have some information, gained through personal experience, that may be helpful to you.
    Wishing you well.

    1. deglasson Avatar

      Hello – I didn’t see your previous message and can’t locate it anywhere – look forward to hearing of your experience.

      1. fishtanx2011 Avatar

        I resent the message. Again, I suspect you can find it in an Inbox called Other because you have not seen or accepted my friend request. Please look for a friend request from Dennis in Iowa, USA.

  3. deglasson Avatar

    Hi Cous – How was France? Hope you had a good time and drank too much and the weather was kind. Finger improving little by little – toes crossed! Love David xx

    1. babssmith1945@hotmail.co.uk Avatar
      babssmith1945@hotmail.co.uk

      Enjoyed France immensely (spelling???) Phil and Col made us very welcome and we had a great time. The city of Carcassonne is fab and the views around the house are nothing less than spectacular, though I was a bit worried about the amount of prossesional caterpillar nests we saw. The quiz night at the Welsh bar was fun and we didn’t come in last. Looking forward to seeing you in Sept. Luv Babs xx

  4. fishtanx2011 Avatar

    David,
    Since we have not yet been able to communicate directly regarding your Mycobacterium I am going to cut to the chase. Hopefully, the doctors have told you to keep your hand HOT. Yes, sleep with a plastic bag over your left hand and arm, OR wear a sweatshirt, then a plastic glove, then another winter-type glove. Keep your arm under the bed covers, against your body. Don’t let your arm dangle about. Keep it hot! These species of Mycobacterium grow best at approx 90F (32.2 C). That is why they grow only on the human hand, upper arm, or feet. The warmth of the torso or head kills this disease. I have not read your blog in it’s absolute entirety and if you already do this and if your doctors have already explained this, I apologize. I cannot emphasize it enough. The antibiotics are important of course, but the heat treatment will kill this thing off quickly.
    Again, if I hear from you through Facebook I’ll be happy to relate the rest of my Mycobacterium story to you.

    DJ

    1. deglasson Avatar

      Hi. Thanks for your advice on keeping the hand HOT – this has never been mentioned by any of the health professionals I’ve come into contact with not have I read this fact. It certainly makes sense and i will ask the doctors when I next see them. Are you speaking from personal experience, direct or indirect?
      BTW I’ve trawled through my FB and cannot find a friend request from you – I wonder if you sent it to someone of the same name. I am based in Brighton UK. Thanks again

      1. fishtanx2011 Avatar

        HI David, I’m pretty sure that’s you standing in front of the Taj Mahal! I cancelled the original friend request, then sent another. Then sent another message which will go to your “other” inbox. I have direct experience with a Mycobacterium infection and my general practice physician had no idea what it was, so mine went untreated for a long time. Fortunately, I came across an article about bacterial infections which can be transmitted from aquariums and/or ponds. That led me to info about Mycobacterium. I called my physician who saw me again, took a second sample from one of the lumps on my arm. My Left Arm, by the way. It all began in the tip of my left index finger. Swollen and sensitive, I thought I had a splinter. Eventually, the finger grew larger and red and split open. I was happy that it seemed to be healing when I bumped my elbow one day. Ouch! And I felt a lump, then another and another. 5 or 6 in total, from pea sized to grape size. All in my left arm. That’s when I quickly contacted my doctor. Anyway, he still would not commit to naming it or treating it. I was telling him it Mycobacterium. I knew my pond had gotten about 90F last summer when there was an outbreak of bacterial infection in my pond fish. it killed them all, but I never could guess that i would catch this disease. Eventually I got to see a skin specialist. A very experienced fellow , probably in his late 60’s. He walked in, saw my arm , and said, Do you have aquariums? Now, he knew my doctor had been told by me that it was Mycobacterium, but I don’t care how he knew, I was finally going to get the antibiotics that I needed. He prescribed two: Rifampin and Minocycline. Even though the cultures that were taken from my arm never showed a live bacteria, he treated me for Mycobacteria marinum. The marinum is the most common, by far, of the infectious Mycobacterium that humans catch from ponds. Makes me wonder if they are absolutely positive about what you have. But, nevertheless, it seems to behave the same way. A bacteria growing in a warm pond that seeks the same temperature in our bodies, therefore it lives in our feet and hands, but not in the warmer parts of our body. So this treatment came from the specialist. He said “I want you to sleep with a plastic garbage bag over your arm. It will get hot and uncomfortable, but do it anyway.” David, I am telling you, don’t wait, keep that hand hot, starting NOW! I took every opportunity i could. I would take a bath and hold my hand under the hot water, or use a heating pad, or sit around watching TV with a sweatshirt and a glove on. I swear I could FEEL the disease dying. I mean it!
        I saw him a few days ago, he said to stop the antibiotics and not see him again unless I need something. I’m cured.
        Don’t let that hand get cold, never use ice for any pain you might have. Keep it hot (by hot, I mean your core body temp of 98F at least). Think about ways to keep it hot as often as you can. Don’t wait. I am hoping you can avoid any further surgery. Good luck.

  5. deglasson Avatar

    Wow – that’s brilliant news for you – it certainly sounds similar, though mine is in the base of my index finger only. They’ve put me on 3 antibiotics – rifampicin, clarithomycin & ethambutol for 2 years. I’ve been told to keep mine dry.
    Some questions:
    How long from starting the HOT treatment did it take to kill all the bacteria?
    Mine leaks out of the scabs all the time (I guess this in the dying infection escaping) – did yours?
    How do you know when it is all killed off – do the lumps/swelling disappear?
    Did you keep yours covered/dressed at all times or expose to the air – risk of another infection getting in?
    They are concerned that the antibiotics aren’t working fast enough – the bacteria in the centre near the bone and round the tendons could be causing long term damage – so surgery would de-bulk it more quickly. I’m reluctant to have further surgery unless absolutely essential and will try the heat treatment – I look forward to speeding up the process.
    FB – yes, that’s me in front of the Taj Mahal – send me a friend request.

    1. fishtanx2011 Avatar

      The two largest lumps (bigger than a large grape) eventually burst open and it was a bloody mess when they did. I had bandages over them for only a few days after that, then always wore a long-sleeved shirt. Fortunately it was still winter here.
      I still can feel small lumps under the skin, but these were once bigger and growing. Now they are slowly receding.
      Once I started the combination of antibiotics and heat the infection stopped growing immediately..
      It sounds like you should try to keep it hot, but also as dry as possible since you have those open sores on your hand. I still think a sweatshirt to keep the arm warm. (this infection can be growing in your forearm) and a glove whenever possible (the Michael Jackson look). The decision to make is whether to use plastic at all (either a plastic dishwashing-type glove or a plastic garbage bag), since this will cause it to be sweatier and more humid. Such an environment will more quickly kill the Mycobacterium but you would have to be careful to let the area dry frequently.
      The redness of your skin indicates an active infection and I would hope that you would see that diminish very quickly once it starts dying. The rest of the hand damage will take a long time to heal.
      David, I am no doctor and I hate to sound like I can even begin to give medical advice. But I’m doing it anyway, aren’t I??? I hope you can avoid more surgery. Good luck as always.

      DJ

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