A Life Changing Moment

I am now ready to talk about my visit with Mr Evan Davies on Friday 9th April, 2010. I have been very quiet which is unusual for me but I did my normal thing - keep busy and ignore what was said until there is a point where I have to think about it. I am usually such a gob shite but I switched off, I avoided anything social media and just turned off my PC, I know I should have updated my wonderful Scoliosis family but I was torn inside and really did not want to talk.

I met on time with Mr Davies and first impressions were wonderful, I was told he was a good guy and out of all the Drs I have met in my time I warmed to him very well, I thought he had great bedside manner and I also appreciated his bluntness. He did more x-rays and he was very impressed that I had all my medical notes and x-rays since the original surgery - well considering I have been banging on about getting medical history and how important it can be I could hardly arrive without mine could I!? hehehehe

He read through everything and compared new x-rays to old.

Unfortunately, the nerves that encompass the pelvis, where they took the bone from to wrap around the rod/spine have been severed too badly and are beyond repair. Unfortunately for me this is where the pain is coming from and has done for a very long time, so basically I have to continue life as I am and prepare for the future with pain management.

My shiny things (the Harrington rod) are to stay with me until the end of my days, Mr Davies can remove the rod, however, I will gain no benefit if I were to have it out and I am not putting myself through that as he would have to cut over the original wound which causes excessive bleeding, trauma and of course recovery from that. I see no point in having major surgery for rod removal when I will gain no relief from my pain, all I will do is cause more pain for a short period while I recover and I just do not fancy that at all!

The discs below my rod L2/L3 are degenerating and will over the next few years fuse themselves to the disc above, L1. Mr Davies is confident that this natural fusion will be pain free and the fusion itself should fuse in the correct place, this will mean my fusion will naturally extend from L1 to L3. Some good news though - L4/L5 are healthy discs and should give me some shock absorbers for the near future :)

Having artifical discs is also not an option and repairing the severed nerves is near impossible as they are so thin and wispy that Mr Davies would not be able to knit them together as he will not be able to see most of them. Part of the reason why they do not take bone grafting from the hips these days is due to the problems I possess so I guess we were pioneers for the future of scoliosis surgery in the late 80s, great for the future but not so great for those of us who have Harrington rods!

He confirmed I have a flat back but I do possess a slight lumbar lordosis which is good as it means my whole lumbar is not completely flat, he checked for curve progression and I am progressing but not rapidly and he feels no need for concern there, I have noticed this in my clothing and mentioned it many times to family and friends, I am glad I was not going mad! hehehe


My Scoliosis Future
Now I have been to see Mr Davies and know what is in store for me into the future I have had to make a few decisions in life, such as stop trying to do everything at once! We own 2,700 square metres of garden and I just cannot manage it on my own, although I do try! I need to get myself someone who can come in once a month and help me weed this, plant that, carry this and that! Basically I need to slow down, stop hurting myself and sort my life out.................... I bought a shopping trolley this morning, this brought back memories of having to use one at school and all the tormenting that happened during those days, I hated the damn thing, it was un-cool and very un-trendy and this is how I feel about the new one I bought. The fact that I crossed the line and bought one pleased me, whether or not I will use it is another scenario altogether! I did come home and have a little cry because I just want to be a normal 33 year old woman who doesn´t have to make choices like if I go to the pub tonight I cannot go to my friends tomorrow or if I do gardening today I cannot go clubbing tomorrow, I know they seem insignificant to many but every time I decide to do anything I have to plan because I will suffer for a few days no matter what I do, everything from a walk down the road to a ride in the car, shooping for food, shopping for clothes, cleaning the house, tidying the garden - the list goes on.

So since coming home I have focused on what I need in my life to make it easier and a list is underway, I have a painter who can come and help me do the inside of the house, just looking at a paint brush makes my back scream "NOOOOO", usually I would just get on with it but this visit with Mr Davies has made me realise I need to be sensible, sit back and let others help me, this is something I have struggled with for many years, I am a very independent woman and would prefer to help others than admit I need help myself - I am sure many other Scoliotics out there would agree with that statement and admit they too do the same :)

I am looking for an alternative to Bowen or a new Bowen therapist but ideally I need one who can come to me as a drive down to the coast for treatment cancels out what I went there for in the first place, driving affects me more than anything and I am not sure why, I am guessing at this stage it is the type of car we drive.

I need to embrace the aids more that I have in the house and if I need my wheelchair well I need to just get on and use it, if I need my walking stick or shopping trolley, again, get on with it and stuff what everyone else thinks. This is easier said than done, however, as I feel that when I use my chair others may think "well she was alright yesterday, why does she need that she only has a rod in her spine", this does affect me mentally and although I don´t care too much what people think of me, I feel vulnerable in my wheelchair and then this starts messing with my head - another milestone to cross and if anyone can do that it is me :)

I am sure there are more tears to come as I have yet to sit down and speak with my girlfriends and actually share my thoughts, no doubt this will be over a bottle of wine or two but I have some amazing girlfriends and if anyone can shake me into place it will be Trine, Karen and Gina.

If you want to share your thoughts about my visit with Mr Davies, feel free to go ahead, I will not stop researching Scoliosis because of this visit, I just have to find the strength within me to continue, no doubt this will come over time especially as I have a very large family of twisted brothers and sisters - love to you all

Over and out for now ;)

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