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

[lyssie]

[jsewell]

Hi Lyssie,
I am sorry for all your pain and frustration. I have been there involving my back and endocrine problems as well so i can relate. I am fused from C4 thru L5. I currently have moderate pain in one leg, different parts of my back and seems all through my left side from my neck down. It sucks . I did have a few months of being in bed or a wheelchair after one spine surgery recently , i am still very weak from that. At that time i could not put any weight on my right leg without pain i could not stand, i just couldn't walk or stand up and the left leg was in bad shape too.
I just wanted to kind of commiserate and kind of welcome you to the forum. I am afraid i have no advice. just friendship
Judy

[fuzzy]

Hi Lyssie,

Welcome to this forum.

Thank you for sharing your story and your pictures. I hope the docs can help you with the pain as you go down this road of being a spine patient.

As for me as of right now the ADRs still out number the fusions in my spine but not much longer as the evidence gets stronger that I need to have a more drastic surgery and there is most likely no way arround it unless I don't mind loosing my functions and stay in bed or a wheel chair.

[lyssie]

Thank you both so much for the warm welcome.

Golly, reading through everybody's signatures... You've all really been through a really lot

Today will be a tiring day as my back has woken me up at 5:30am - not cool!!

I honestly don't like that these injections have made mainly pain worse plus severe spasticity in buttocks and legs! Which is making it so effortful to walk at all. I think I'm going to be back on the crutches to be honest I just find that taking the pressure off my spine helps. But altogether I am pretty weak which I think is due to all but one of the thoracic spine being fused and my shoulder blades and arms being a bit helpless.

But! I wouldn't compare that to the trouble my SIJ's and lumbar/sacral spine give me.

They did mention performing a bi-lateral sacro-iliac joint fusion. But I'm being referred to their (Stanmore's) pain team. I was local with my pain consultant but she turned out to be not very nice and discharged me. I'm having physiotherapy, which is lying on the side at the moment whilst things are so bad. She's a specialist pain physiotherapist and a lovely one at that

Thank you so much for introducing yourselves by the way, Lyssie