I'm Lyssie (fused T2-L4)

[lyssie]

Hiya everyone, initially I am sorry for the essay I am about to type

I am 24, I live in the UK. I was initially disgnosed with scoliosis at the age of 10 years old. I had my first correction and fusion (T11-L3 performed anteriorly by Mr K Lam). I had severe pain in the lower back (mainly left sided but I will get to that!!). Mr Lam did a few injections into L4/5/S1 and then a discogram which was negative so he didn't really know what to do apart from send me to their pain clinic. I got a bit fed up and wouldn't give up my fight with investigations (and still won't to find out what's really going on) but that brings me to a new chapter of this...

I went and saw Mr S Tucker for a second opinion and he did a full spinal SPECT scan which showed majorly increased uptake in both sacro-iliac joints, suggesting sacroiliitis. I had a denervation of my left SIJ by Mr L Wilson which helped but I was having existing problems with the fact that my scoliosis was getting worse despite the fused part being a-OK. I had a further fusion posteriorly making my fusion from T2 down to L4 with 2 long rods and a shorter rod from the previous fusion. As my scoliosis went off to the left side they thought they should really make me a bit more equally balanced which would *hopefully* then take a little pressure off the SIJ's.

Symptoms include:

Pain and effort on sitting to standing and standing to sitting motions.
Pain and severe hypersensitivity on both SIJ's, plus below my existing spinal scar.
Pain down legs and stabbing pains in knees.
Can not walk far without lots of pain.

I am in agony and pain is continuing to get worse with both sacro-iliac joints. Yesterday I had my 3rd set of injections which were really the most traumatising and agonising. They were finding it very hard to get into the correct space on the right SIJ. The Dr who did the CT guided injections was able to inform me that along each CT guided injections, they've shown considerble degenerative changes PLUS osteocytes which would be the reason they're finding it increasingly difficult to fit the needles into the space. Now! I am trying to do my research on Ostecytes but I am getting a major brain ache I don't get any of it so if anyone knows much on this in the ways of me being able to take it in a bit more, I would be extremely grateful!

I have really joined to talk to people as I am finding things so difficult to cope with.

I am due to have a major Mitrofanoff urinary diverson in June of this year (2013) due to atonic bladder plus Fowler's syndrome. I am not able to have sacral neuromodulation for this due to the back problems and ongoing need for MRI surveilance. So I have this to contend with as well as borderline personality disorder. Wanted to mention, so that you'd get a bit of a better picture of things going on with me

If I have forgotten anything I will for sure add it in for you all.

If you have any advice, suggestions it would be super-duper helpful.

Love from Lyssie x x x