In 1996 I suffered an arterio-venous malformation rupture (see HERE) and amongst the bewildering experience I had to undergo two femoral angiograms. Amazing procedure but vile to have! Unfortunately the second one carried out to check the surgery was a success ended up in a disaster: the angiography needle that the catheter was fed through punctured my femoral nerve. The pain was indescribable, an electric shock followed by akin to severe stomach cramps/menstrual pain but affecting my whole right leg from groin to foot. Off the scale.
To cut a years long story short, I was constantly in and out of Accident and Emergency and a stream of ward admissions to give me respite from the pain using high dose oxycodone, gabapentin, ketamine, fentanyl and epidurals to try and relieve some of the extreme agony. But nothing worked long-term except a general anaesthetic! My mental health took a serious battering too, along with various other things, how was I supposed to cope with the Leg From Hell?
Eventually in 2004 I was referred by a specialist in Essex who dealt with spinal cord stimulator implants which transforms people’s lives who suffer from chronic pain that’s non-responsive to medication. I was anxious about neurosurgery near the spinal cord but I was desperate for help. They trialed me for a week using an external system and the result was incredible!! The sickening neuralgia was overrode with a pleasant tingling sensation.
The relief was such an emotional experience after all the failed medication trials. Dr Simon Thompson and I even did an interview for the Boston Scientific website several years ago and I felt so honoured to be a part of their testimonials. The people involved were really lovely and sent me a taxi to bring me there and back again safely.
A week ago I was upgraded to an MRI scan compatible model (THIS) which was much-needed! My neurologist, the musculoskeletal clinic and my cardiologist have each requested scans so hopefully some of will speed-up some diagnostic progress and help.
Anyone in unrelenting severe pain that is non-responsive to medication and alternative medicine should enquire with your pain team about this incredible little device. Initially my local health authority had to agree with the expensive funding but should you have a serious problem, plus the psychological impact, you should be granted the go-ahead. Back in 2004 the cost was £12,000 and apparently rechargeable spinal cord stimulation system costs £17,422 (from £13,726 to £22,418). And you’re advised to add the charger and remote control to your insurance policy if you have one. I don’t and tried to find a company who insures tech like this but they couldn’t do it.
Dedicated to the NHS with humble thanks.
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