Decompression unsuccessful - plan to detox from Oxycontin.....

January 18, 2010

I have ACM, diagnosed early 2009. In May, I had a posterior fossa foramen

decompression. I had an immediate relief of symptoms however a week later I

developed hydrocephalus and was in the High Dependency Unit for a month, with an

external ventricular drain.

My symptoms for ACM have all now returned (1. Severe headaches coming from the

back of my head radiating round to the front, worse on exertion, coughing,

sneezing etc 2. Neck and shoulder pain, variable 3. Difficulty swallowing -

intermmitent 4. Throat hoarseness) Pain ranges 3-10 out of 10 despite regular

paracetamol and twice daily Oxycontin 40mg, and Oxynorm 5mg for breakthrough

pain).

I manage to work full time and use mindfulness practices and take responsbility

for the emotional impact of the pain, and work closely (with a huge degree of

positivity) with the clinicians involved in my care, as I see the problem as

being 'mine' to address, with their support.

At the moment, the main problem for me is the side effects from the pain

medication, as I am vomiting 1-3 times and feel intermittent drowsiness (this

has been checked out via CT and bloods and is felt to be medication related) -

this ofcourse exacerbates my headaches.

I saw my neurologist yesterday and he has asked my neurosurgeon to review me

urgently. He would like the neurologist to rule out any other options and then

plans to admit me to take me completely off the Oxycontin/Oxynorm to establish

to what extent my pain may be related to 'rebound' headaches and to plan

different pain management. I am fully on board with this, as I have a strong

understanding of the pain/reaction process and am intent on utelising minfulness

practices to manage pain as opposed to analgesia, if my problem is a long term

one.

I am wondering if anyone else has tried this approach, and to what extent it

helped. I am strength based in my approach to working to overcome the impact

that ACM has on me, and only want to hear others experience, without the focus

of 'blame' in terms of perceptions of clinicians. I reframe my experiences to

bring about positive change and contribution and own the issues I have. I would

really love to be able to share with others who can bring a more positive and

strength based experience about ACM and ways of overcoming the challenges we

face, as opposed to blame and negativitiy.

I just feel that we all have so much to offer in terms of changing what happens

and be an advocate for ACM and how we can transcend the symptoms to grow and

change.

Kind regards and metta to you all in your journey!

Lorna

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