I have finally gotten my Stereotactic Radiosurgery procedure! Beaumont called me on Tuesday the 12th on January, everything was ready for my procedure the following day. I was excited and nervous at the same time, it's a big deal, well it is to me. Anything that involves radiation in close proximity to my brain makes me nervous. The positives are that it has a great chance to reduce my pain, and that would be absolutely indescribable!
I took some painkillers and the lovely nurses in St. Luke's, Beaumont gave me a mild sedative. It was no match for the horror of the mask. The mask was hell. It was so tight, I couldn't even blink. Thinking about it now makes me feel nauseous. As I have Atypical Trigeminal Neuralgia, I have pain all the time. The slightest touch or breeze is like acid running down my face. The mask was a thousand times worse and I don't know how I got through it. The procedure lasted about an hour and a half, well that's what they told me. It seemed longer, much longer. The staff were so nice and so supportive. I held up my hand several times to get their attention. Each time they told me that I was doing so well and to try and hang on for a little longer. I needed that push, otherwise I would have been out of there after five minutes.
I don't want to put anyone off, this is my experience. I have spoken to several others who have gotten the same procedure. Some experienced pain, and others felt nothing at all. When you live in excruciating pain, it's worth a shot. Ask any person who suffers from any kind of chronic pain condition, they will try absolutely anything.
There is no reduction in my pain levels at all. The past couple of days have left me bed bound. I am hoping that it will work, but the doctors said if the procedure worked, it may take a few weeks.
I also want to mention something, something that has really pissed me off. In Ireland, you can elect to have Cyberknife treatment in some private hospitals. Cyberknife is very similar to Stereotactic Radiosurgery. It costs in excess of €20,000! If you are lucky enough to have health insurance, the procedure is partly covered. Unfortunately, having a chronic pain condition causes unforseen financial circumstances for those afflicted. This means, of course that so many of us are no longer fit to work and we are either on Illness Benefit or Disability Benefit. There is no way that someone on a Social Welfare payment could afford any kind of procedure privately. Now, there is always a way. Despite the cutbacks and how crappy our health service seems to be, the services are there. We need to push our doctors to come up with treatments and procedures as well as trying different medications. It may be a long wait, but asking for cancellations helps.I have received excellent care, but I have always pestered my Consultants secretaries, and literaly begged for help.
Here is a link where Benefits and Allowances are explained fully.
Chronic Pain Ireland - Benefits and Allowances
More information about Stereotactic Radiosurgery can be found here;
Stereotactic Radiosurgery - Mayo Clinic
Trigeminal Neuralgia (TN) is often considered the most painful disorder known to mankind. TN (a.k.a. tic douloureux) is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed, such as the lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. This blog chronicles my journey.
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