Hi guys,

I can't remember if I told yee this already but I finally got a date for my the revision surgery of my leads that more than likely have slipped. Friday 24th June, it was originally set for next Wednesday but apparently there isn't anyone from Medtronic available.
I've been gradually deteriorating over the last few weeks and the pain has been more than unbearable recently.
After my tweeking 3 weeks ago the Medtronic technician said she would speak to my consultant about the stinging sensation and the terrible pain in my lower back, I had previously mentioned the lower back pain to my consultant and he was suggesting a 2nd SCS which we had discussed the first time we met (I might still have to have this).
About two weeks ago I was in the most dreadful pain that I decided i'd text my consultant who quickly rang me back, he was in London at a Conference but said he'd sort something out when he came home and I was to ring his secretary the following week on the Tuesday, I did this and she didn't know anything about what the consultant had said but said she couldn't give me a date for the revision, June was booked up and there were loads more before me for August, she said she had to treat everyone equally which I understood, how is she supposed to know who is worse than someone else, yeah she might see but she isn't expected to know. I just sobbed when I heard this, I can't wait that long i'm in too much pain, i'd be in a right mess by that stage. She said to ring her back the following week after she spoke to the consultant.
I rang back then and got the same story about the dates. I immediately text my consultant and told him how bad I was and that i couldn't cope with all this pain, he agreed, and apologised for not sorting things out sooner for me as he'd forgotten, personally i was annoyed but hey people forget and things fall through the cracks and i accepted that - I didn't say any of this of course. He rang me back 5 minutes later and said he'd bring me in exactly a week later! Alleluia!
The secretary rang me yesterday and basically gave out to me for jumping the queue.... I was very annoyed but I very calmly explained to her that I wouldn't have rang the consultant if I didn't think it was urgent. I didn't want to have to do it and I was aware that I was probably putting someone else off but if I wasn't the type of person that would take my own health seriously or in my own hands, i'd still be at home, depressed, suicidal and god know what else. If I don't care about my own health no-one else will, especially in the crappy health service in Ireland. I didn't want to p **s anyone off but i was upset about it, how dare she? Seriously I would never ring a Doctor like that if I didn't think it was serious or I didn't need it. So hopefully now I'll get in on the 24th and I can get back to where I was a few weeks ago and will be happier that I'm not in the same pain I was in 6mths ago and I'll be back walking 2miles a day, back to work where I can enjoy being back to work and not like I was 6mths ago where by 11.30 in the morning I was ready to go home to lie down on the floor for the rest of the day.
Thanks guys for listening to my rant but I wanted to get this off my chest and I still feel a bit guilty but f**k it, I have to take my health seriously, this country is really, really bad for waiting lists and not giving a crap about people's health and i'll be damned if i'm going to spend another 4 years in pain because I didn't know the way things worked.

thanks guys,

Sinéad but now

Hi glad you got things going to get fixed. workman comp not any better. may 11 Dr said need to relocate leads. still no date. i may have do the same and get on them to get something done.
hope and pray everything goes well
Ron h

My dear friend Sinéad-

You are the captain of the ship named LIFE on which you sail. You had to take the action taken to resolve your problems and only you could make the subjective analysis of the situation in your body to bring it best to the consultant's attention. Truly, the system has its quirks, queues, and rules, but while I sympathize with the poor secretary, you are your best and often your only advocate. True! Allow me to emphasize this by reflecting on my story a bit: irrelevant factually, but relevant from perspective.

After my car wreck in 2005, over six years ago now, my pain doctor referred me first to a variety of therapeutic treatments for one such as I in an effort to allow my body to heal itself while cautiously exercising and the like. My body did not respond well to my concerted efforts at compliance. Pain worsened and worsened. Meds were often changed up so as to help me in an effort to control pain as I was striving to manage litigation of extremely high value and was trying to stay in the saddle.

Pain eventually became so bad that I would break down crying in front of clients as I prepared them for deposition and the like. My doctor feared as did I that the body truly needed surgical intervention. I was referred to a number of surgeons who did not wish to treat me [I later learned it was due to my visibility as a lawyer]. My condition worsened. Agony became a mild word to describe my lot. I felt the system was abandoning me and that pain, although it could not kill me, would do me in emotionally.

Finally, I was referred to a different surgeon for a new look at my case. This was just before Christmas 2005. He said he could help, and would fit me into his calendar to work on my back. At last my wife and I felt there was indeed someone out there who would help. It seemed we had found grace.

Still, before the calendar freed up, I would need more MRI workups, and I had to fly to Wash DC for more depositions. I was doing all I could do. Pain was paralyzing me and I knew not why. On Christmas Eve I flew home from DC lying flat in first class, fully medicated according to my prescriptions, and crying. The flight attendants were beside themselves wanting to help me. I told them eventually my meds would knock me out, and blessedly they did so.

Upon arrival home, I was unable to make it to our bedroom on the second floor except by crawling. Christmas loomed. Happy? No. Ever sore that no one before had reached out to treat me for reasons I learned to hate. My career was in the way.

I was trying to wait out the time until next Doctor appointment, but pain intensified. I took to screaming at the top of my lungs because agony had overwhelmed me. Then the queerest thing occurred...... my body below my waist stopped functioning. Nothing worked. I was in serious trouble, trouble which could threaten my life since bowel and bladder were no longer under my control. Cauda equina was the issue, and this the result of untreated impingement of the nerve bundles which serviced the body below my waist.

I DID call my surgeon on an urgent basis. He did return my call, and when he heard what had occurred, he became alerted to two things, risk of life and risk of permanency of injury to the nerves. He had me in surgery, a surgery which I both appreciated and hated, for invasion of the human form always carries risk. The pain post surgery was something I had never experienced before, BUT the risk to life and nerves was addresssed. It turned out I was left with permanent nerve injury, pain remained my constant unwanted companion although my back had been well repaired. SCS ultimately became the only answer to my pain, and that story you know.

The reason for relating this tale, to help you feel justified in having gone to the consultant with your needs. Only you know your body. Pain is subjective. The consultant in dialogue can effectively assess your need vis-a-vis others in the queue. Do not be harsh with yourself. Perhaps in my case I should have been more advocate than patient when my back injuries were driving me to the edge of insanity. Perhaps....... At least, I am glad you took initiative. Good for YOU!!

Caring for you loads and praying for you as much,
June 24 is soon,
I pray your help is just around the corner,
Mark56