Sunday, 3 August 2014

The continuous wait......

I haven't updated my blog for a while, because I basically have no idea WHAT is going on!!!
Since the cancellation of my stimulator implant surgery, it has been extremely difficult to get any straight answers from anyone.
All I know is;
* I should get the operation in 2014 at some point
* They still haven't got in contact with the representatives from St Jude's, so can't plan a proposed date, in case it changes.

I realised the other day, that I haven't had any operations to help me through since November 2013!!!
Mainly because I was constantly waiting for the date for the implant and so was working toward a date constantly. That helped me get through the hard times, as I would think I only had X amount of weeks to get through BUT it actually now means that I can't really think about a temporary option as the date for the permanent may come up and I need to know how I am feeling from it, without any pain relief blocking it's benefits.

Honestly, I can't believe I've been left this long within being told anything!!!!!!

In the mean time, I have found that going to the gym and actually working my muscles is helping somewhat. I feel less intense pain, far less often. It's only been a couple of months of going, but am pleased I have found something to help me through this long wait.


  1. Have you been to this website: It is a device that may be helpful to you. I have one sided headaches for 5 years. I went on disability. I had the trial of the peripheral nerve stimulator and it worked great!! My health insurance denied the surgery to implant it. I moved from Colorado to Florida a year ago. I am treating with a neurologist in Tampa. I attended a 5 day outpatient program at Tampa General last October. Through a combination of learning relaxation techniques, self massage, stretching, using a different medication, 31 Botox injections every 90 days, and being out of the cold I went back to work full time 6 months ago. YEA!!! I have been feeling so much better!! I still have to watch some triggers like bright lights and alcohol and still am on daily medication but I haven't been bedridden for months.

  2. This comment has been removed by the author.

  3. Thanks for your help but it states that this devise helps trigeminal neuralgia as it stops pain caused by the trigeminal nerve and therefore associated migraine/head pain. Therefore it won't work to stop pain caused by damage to the occipital nerve, as this is at the back of the head, just at the top of the spine.
    I appreciate your thoughts though. All the best with your pain journey,