And So It Begins

1st September 2019. Pinch punch and all that.
​As the new school year begins so comes my new start. Not in a born again ding dong* kind of way but in an explanatory where the hell have I been and what am I doing kind of way. 

If you have read my blog or articles before you might remember I have had  on-going back problems that resulted in surgery to fuse my sacroiliac joints. Unfortunately the surgeon pushed one of the surgical screws into a lumbar nerve and it has caused a mishmash of issues that include continuous pain, nerve damage with its accompanying nonsense, foot drop, muscle wastage around my ankle and lower leg and sometimes my leg disappears itself. The dodgy grammar stays because it is such a perfect description. 

Life is challenging. After exhausting local pain management services my GP suggested I find a new consultant and start again. I did this and with some creative self-advocacy and charm (fluke) I ended up in the care of the amazing team at Southmead Hospital, Bristol.

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Tests were ordered; MRI not much use as too much artefact, Mylogram was a fail because it was impossible for the interventional radiologist to get the needle into my spinal canal to inject contrast material because because of the bony overgrowth*, CT bit useful but limited, nerve conductivity tests, ouch, but when combined with scans clearly shows the issues.

Permanent nerve damage coupled with leftover mechanical problems in lower back and scoliosis means chronic pain that is forever. It’s as if we are married with no hope of a divorce. This is not pleasing, however,  my heart did a blip when SM; my ortho, suggested referring me to the department of dark magic to discuss a spinal cord stimulator.

My knowledge of SCS was limited but having decided to put my trust in him I duly went for an assessment with SLJ. She is perfectly lovely and explained in detail, a lot of detail, maybe a bit too much detail how they work and what is involved. 

“Spinal cord stimulation works by sending small electrical impulses to your spinal cord. An electrode is placed over the spinal cord and is powered by a battery which is implanted in the buttock or abdomen. Stimulation helps to block the pain signals travelling to the brain. It may feel like a tingling sensation which may help reduce your pain. You may not feel any tingling sensation. The amount your pain may be reduced varies from person to person.” NHS, North Bristol Trust. 

First up is a 5-10 day trial whereby an electrode on a wire is placed over the spinal cord and when it feels as though in correct place the wire is brought out and is attached to a battery then taped down. This is a procedure.

I get a remote control to adjust the settings. After the trial it is all removed.

If the trial is a success an electrode is implanted against the spinal cord and the connecting wire is burrowed under the skin to an implanted battery. This is an operation.

Hang on I feel a bit queasy.

Okay, back again. I am in awe of this but also equally nervous. I have researched until my brain fizzed and for many people this option is life-changing.
After seeing SLJ I had to get a psychological assessment. 

I met with the delightful HO. We had a fabulous discussion and fortunately she decided I wasn’t too bonkers (not PC, whatever, it’s my blog) and was an excellent candidate for SCS.

How exciting it will be to get my life back. 

While I have been ‘challenged’ I have continued to write and develop my upcoming online courses.
I use self-hypnosis/meditation and stuff to cope with my limitations and pain and will share all I know and have discovered.

In the meantime here is a free breathing technique
https://www.daisyshouse.co.uk/courses/abc-123-breathing-method
I think you have you have to enrol and give up your email address but I promise not to send you inappropriate messages. That is a whole other pay-scale ?

​In other news I got a kitten, picture above. She is called Daisy and has stolen our hearts.
​More on her soon. Yes, we have become 'those people'.

Thank you for reading. Love Barbara x

*This was as stressful for the doctor as well as me. He was a bundle of apologies at causing me added pain from the needle stabbing and bone scrapping. I felt quite sad for him when he said he could not proceed and stopped trying.

*Ding dong reference to prevent any confusion ⬇