Riding Through The Woods

Thanks folks for all your kind wishes last week for my trip back to see the surgeon. I’m sorry to take so long to report back on the outcome. While the day in Nottingham went smoothly, I was totally exhausted following it. With the arrival of our late summer, Connemara beckoned and I joyfully obeyed the call. I’m now suitably revived.

Since finishing all the treatment for the osteomyelits, I’ve been having recurring headaches along with episodes of acute bone pain. Despite taking strong pain killers plus an anti-inflammatory medication, the headaches have continued intermittently leaving me to wonder if the bone infection had really cleared. A recent blood test did little to allay this fear as it confirmed that the inflammatory marker (CRP), is markedly raised again.

duck

(Image credit: Display at entrance to Nottingham Castle – photo taken on my mobile phone)

In Nottingham, the surgeon carried out an endoscopic examination of my head and and the report back was encouraging. The bone which was exposed by the surgery, has healed well despite the set-backs. However, the surgeon agreed that the abnormal blood test was a cause for concern. I had another blood test before leaving the hospital and a radioisotope bone scan has been requested, to check for any residual infection in the bone.

Due to the nature of my ongoing symptoms, the surgeon has advised that neuropathic pain is the most likely cause. This type of pain occurs as a result of damage to nerves following surgery/bone infections. Neuropathic pain is difficult to treat but can be eased by ‘tricyclic’ antidepressant medicines, by an action that is separate to their action on depression. Treatment is usually long term.

“Neuropathic pain (‘neuralgia’) is a pain that comes from problems with signals from the nerves. There are various causes. It is different to the common type of pain that is due to an injury, burn, pressure, etc. Traditional painkillers such as paracetamol, anti-inflammatories, codeine and morphine may help, but often do not help very much. However, neuropathic pain is often eased by antidepressant medicines – by an action that is separate to their action on depression. It is thought that they work by interfering with the way nerve impulses are transmitted. There are several tricyclic antidepressants, but amitriptyline is the one most commonly used for neuralgic pain. In many cases the pain is stopped, or greatly eased, by amitriptyline”.

I was sent home with a prescription for a low dose of amitriptyline. The side effect of this medication is increasing drowsiness so I’ve been advised to take it only at night and to persevere with it as it can take several weeks to get maximum benefit. If, after 3 weeks,Β  I’ve not experienced any relief from the pain, I’ve been instructed to double the dosage every week until benefit is achieved. So… if my blogging becomes more sporadic with words slurred, you’ll know why!

The surgeon’s parting words to me were “you’re not out of the woods yet but there is light at the end of the tunnel”. That sums it up nicely.

(Information Source: WebMD and Patient UK)

9 Responses to Riding Through The Woods

  1. Annb says:

    Not long in the door from Crumlin here, (growing boy, shortening tube issues again!) What a joy to see you back in the blog world – I was starting to get concerned. I don’t quite know what to make of your current situation though, the raised CRP is obviously a concern – could it also be a common or garden virus which might be unrelated? How do you feel about the new meds regime? I really hope that in 3 weeks time you are reporting a new pain free spring in your step.

    So glad to hear you got to Connemara this weekend, the weather was so amazing here in the west. Jess and I went swimming on Sunday, and I found myself floating in the glasslike bay being eternally grateful to be alive.
    I really hope you get relief soon Steph, this has been a long bout for you, it must be exhausting.

    Take care
    Ann xx

  2. Baino says:

    Ok I’ll forgive you for not answering emails then! Drowsy’s good as long as you have the time to put your feet up! Here’s hoping that light shines brightly in a week or so.

  3. achelois says:

    Sorry not posted lately my reader is playing up but is feeling better now. Just to say that if you have no relief with the amitriptyline ask for Lyrica possibly. Its not often prescribed as its expensive. I can’t take amitryptiline because of unnaceptable side effects. I have along with the other ‘stuff’ post herpatic neuraligia of the trimegal nerve (so) which sounds similar to the type of neuropathic pain that your consultant described. I hope you have some relief soon, the pain I get from the PHN is horrendous and if your nerves have been addled from all your surgery I expect they are complaining big time. Taking the amitriptyline earlier make help with the morning drowsiness but there are other options apart from Lyrica. Such as Neurontin (AED’s) can be very effective for neuropathic pain.
    Its time you had relief from pain and illness – really you do and soon.
    Gentle internet hugs.

  4. knipex says:

    Steph

    You really are having a bad run of luck.

    Hope the new meds work and you finally get some relief and delighted you got to enjoy some of the fine weather out west.

  5. Steph says:

    Ann – Sorry to hear that. I didn’t realise that Crumlin is also involved in boy wonder’s care.

    Connemara is my idea of heaven. It was glorious though I wasn’t brave enough to go further than my ankles in the sea.

    I do apologise for my long silence. I seem to have become very lackadaisical recently. I’m blaming the drugs! πŸ˜‰ And it’s a real treat to hear that I was actually missed πŸ˜€

    The raised CRP is a bit suspicious. Normal level is <10. Mine was 137.5 when last tested. It was similarly raised at the height of the bone infection but slowly dropped down to near normal in response to treatment. The ENT guys tried to blame the latest increase on the colitis but the gastroenterologist assures me that my type of colitis is not to blame. I'm hoping that the bone scan will be conclusive. If it shows recurring infection, the surgeon says I'll go back on high dose antibiotics (orally) and will have to face the consequences with the colitis. If the scan is clear, then there'll be less reason to be concerned about the raised CRP. The surgeon's opinion was that the pain I describe, is neuropathic in origin so I've commenced treatment regardless of the outcome of the scan.

    Baino – I'm guilty I know, I'm sorry! I have been busy doing some data entry work (from home) which has limited my blogging time but I think the drugs may also be partly to blame for my poor communication lately. As you say, drowsy is GOOD. I'm usually an early riser but I'm sleeping soundly these days and definitely having difficulty getting up in the mornings. I've always believed that sleep is good for healing so I'm not complaining!

    achelois – Thanks! It's good to hear from someone familiar with taking amitriptyline and thank you for all the advice you've offered (and hugs) πŸ™‚

    I'm on a very low dose to start (10mg) but I can definitely feel the side effect of drowsiness (see above comment). I'm hoping that this will lessen in time and provide relief from the pain and headaches without having to increase the dosage. I'm waking with headaches at the moment and when they get severe, I can barely touch my nose for the pain it produces. This makes wearing glasses for driving, tv etc. very unpleasant. These symptoms only started after I finished treatment and haven't lessened with time so I'm willing to accept treatment at this stage.

    I was offered amitriptyline 2 years ago following surgery when I did have a classic scalp neuralgia but as it gradually eased, I didn't go down the neuropathic treatment route. This time, I'm not sure what to make of the pain but as the surgeon seems so convinced it's neuropathic in origin, I'm willing to give treatment a try. If the side effects get too much then I might be tempted to 'put up and shut up' and hope the symptoms subside with time!

    Knipex – Thanks! I know I'm not the only person who'll want to party when I finally get clear of this problem with my head!

    I did really enjoy that lovely weather in the West though I missed the pleasure of having a few drinks with all that fresh air. I can't seem to tolerate alcohol at the moment so I find it best to stay clear altogether.

  6. Lily says:

    What can I say other than so sorry you are having such a rough time. You deserve a lucky break in this cycle. Fingers crossed.

  7. Steph says:

    Lily – Hi! Thanks for that.

    It’s all relative really. Having come through several potentially life-threatening situations this summer, I’m happy to be alive. Everything else pales into insignificance really.

    I too, like the surgeon, can see that there is light at the end of the tunnel and I look forward to being able to say “we’ve done it, success at last!” πŸ˜€

  8. Geri Atric says:

    Hi Steph,

    It’s been a while..
    (have been ‘off the air’ and away from home a lot this month).

    I am so sorry to read of this latest setback to your health. What a ‘bone shaker’ of a ride this is turning out to be for you Steph(!) Hopefully the bone scan will be clear and this amytriptyline will banish the nerve pain/headaches as quickly as possible.

    Take care – and here’s wishing you lots more warm autumn sunshine in Connemara – and a quick exit ‘out of the woods’!

    Hugs xx

  9. Steph says:

    Geri – Thanks! I was only wondering about you yesterday and lo and behold, a comment arrives today. I’m so sorry to see that you’ve been through a family bereavement… never easy!

    I wouldn’t really describe it as a setback… more a delay in recovery. I’ve not had the bone scan as yet but in the meantime, the new drug seems to be doing the business as I’ve not had any severe headaches in over 2 weeks now. Having said that, the amitriptyline has turned me into a bit of zombie. I’m having real difficulty getting my act together and even writing has become a chore. I’m longing for the drowsiness to wear off so that I can get back to enjoying the blog world again.

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