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Old 25th July 2014, 11:40 PM
Amphy Amphy is offline
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Join Date: Jul 2014
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Default Mistake with pins

(copying and pasting the same as I wrote on another forum, since I didn't get a reply there)

I'm feeling at a bit of a loss at the moment. I had surgery on my spine when I was 16 (I will be 27 next month). The surgeon diagnosed me with Stickler's syndrome, and stated that had caused the scoliosis. As soon as I woke up from the operation, I was complaining of agonising nerve pain in my legs, which fortunately improved somewhat with ketamine (I couldn't even stand a sheet over it at first). I was Ok-ish for a few years, after a long recovery, though the nerve and back pain never stopped. Then I started to experience nerve pain and pins and needles in my wrists and hands, which gradually spread - everywhere just burns, and goes numb like pins and needles, there are odd, uncomfortable sensations I can't really describe. I also have weakness/clumsiness in my limbs, which has got rather worse also. I have to remember when stepping out of the car, to step onto my stronger right foot, so as not to stumble. The pain clinic I attended suggested it might be Central Pain Syndrome, and the new orthopaedic consultant I went to see told me that the pins in my spine were in the wrong place, all but the top one goes right through my spinal canal. He was obviously reluctant to criticise a fellow surgeon, but did not look very impressed by it (neither did the expert orthopaedic surgeon I've just seen a few days ago). This is not something the surgeon who did the operation had told me - he must have known, I think, surely, but instead told me the nerves had just been 'jangled' and would get better with time. There were supposed to be two surgeons doing my operation, but that day there wasn't, one was away. He'd told me before the operation that I'd be able to live a normal life, no more pain, too, but even the back pain itself didn't stop. The new consultant was also concerned about my spine, and so started monitoring it. The curve is, very noticeably, getting worse, it's started curving again just below the pins.

So, I travelled to see an expert, as my consultant outright told me he just wasn't sure how best to handle it, and wanted another opinion. I've just been told that I need two more operations, the first to remove the pins, which will be risky, and the second to pin the whole spine (which is really what should have been done in the first place). They've noticed an issue with my neck (which hurts like crazy), in addition, which they believe is what is causing the nerve issues in my arms and upper body (which they couldn't figure out the cause of, before). If I don't have it done, I'll just curve right over, basically, though he thinks I'd retain some mobility and be able to walk still (though not with ease, obviously). That might actually be better than it going wrong (again), obviously it's risky considering where the pins are. They can't pin the rest of my spine without removing them, because they'd end up moving as my spine was pinned into a new position, which would be very dangerous. The nerve damage will be permanent, regardless, at this point the damage is done (if the first surgeon had just been honest, I could have sought correction earlier), but should stop getting worse, as far as my lower body goes at least. I'm not sure what they'll need to do with my neck yet, if they can do anything.
It just took me so long to get a proper diagnosis, too (I didn't go into detail on all the different clinics I've been to, and how often I was fobbed off, before I finally got that answer). Finding it all a bit much to take in.
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Old 27th July 2014, 02:48 PM
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tonibunny tonibunny is offline
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Join Date: Jan 1970
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Default Re: Mistake with pins

Hi Amphy, welcome to SSO

I'm so sorry you've had such a tough time. Stickler Syndrome, for those who have never heard of it, is a Connective Tissue Disorder (like Marfan's and EDS are) but it is genetic and progressive and it has certain symptoms that are caused by issues with collagen.

It sounds obvious that you need revision surgery Amphy This should ONLY be undertaken by a surgeon with experience in adult revision surgeries. Removing old metalwork and replacing it with more modern rods is typical of such surgeries, though it can be tricky because the old rods can become embedded in bone when your spine has fused - meaning that they have to break this bone away to get to the rods. There are a few of us here who have had ths done; I had it done when I was 18 to replace an existing rod that had been placed when I was 10 with a longer rod to include my lumbar curve too. This sounds similar to what you should have had done - if you have a large double curve ( ie an "S" curve) you'll need both upper and lower curves fused or your curvature can continue to progress in the unfused section.

Your case is further complicated by the fact that your rod is passing through your spinal canal, so it will be very very close to your actual spinal cord. Could you let us know the names of the surgeons you have seen already please (send me a PM if you'd rather not mention names in public) and we'll let you know if any of our members have any experience of their work. Don't worry, we'll do our best to help you to find someone who will be able to help you

Toni xx
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 27th July 2014, 09:40 PM
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JayMoe JayMoe is offline
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Location: South London
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Default Re: Mistake with pins

Hi and welcome,

I'm so sorry to hear this has all happened. I can't add anything to what Toni has said. So just saying hi

Hope you manage to get help soon though to help sort it all out.

Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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Old 28th July 2014, 05:29 AM
Amphy Amphy is offline
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Join Date: Jul 2014
Posts: 10
Default Re: Mistake with pins

Thanks both. Appreciate the support.

I'm currently seeing Mr de Matas at the Liverpool University Hospital, and just travelled to see Mr Marks at the Royal Orthopaedic Hospital a few weeks ago. Both would be doing the first operation together (at either Liverpool or Birmingham), so I'm Ok there as far as the surgeon's experience goes. I can't remember the name of the consultant who is going to look at the neck issue (haven't seen him yet so don't have much info on that), though it'll be at the Walton Centre iirc.

The worst thing is by far the nerve damage, honestly. I'm kind of not sure if it even matters if the spine just curves again, really, considering the operations won't fix that anyway.

That does sound similar, tonibunny (I emphasise, sounds rough). How was recovery? I actually had just a single (large) curve originally, which was straight-ish after correction, it's just started to curve again below the rods, in the same direction as before, so it's more a big 'C' than an 'S'. Mr Marks does indeed intend that the whole spine should be fused, in the second operation, after the first to remove the old rod. Going to meet with Mr de Matas in likely a few weeks to discuss risks, just waiting for the letter.
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Old 28th July 2014, 11:45 PM
Jonny Jonny is offline
Join Date: Jan 1970
Location: SW17
Posts: 2,896
Default Re: Mistake with pins

Hi Amphy - nice to have you on board! I'm also 26 and had surgery when I was 16.

I'm quite disturbed by your story and should stress that pedicle screw misplacement with symptoms (as you describe) isn't common. I'm not surprised that it's caused you the grief it has done, and it's good it hasn't done any more damage than it has. I think you can be confident that surgical revision is likely to be of help to you (providing that your new consultant thinks the same).

Also, don't underestimate the benefits of having your fusion properly stabilised. I needed a fairly extensive revision early on (eight months post op) because of a hook pullout, and after everything had settled, it really felt different having everything stay put - not creaking and crackling around - and I felt immensely better for it, even in the parts of my spine that supposedly fused successfully the first time round.
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Old 2nd August 2014, 07:07 PM
Amphy Amphy is offline
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Join Date: Jul 2014
Posts: 10
Default Re: Mistake with pins

Hi, Jonny. It's certainly reassuring to hear you felt a lot better for the revision (gosh, that's bad luck having a hook pullout, though).

Yeah, while I know the damage could indeed be worse, unfortunately the nerve damage is pretty bad as it is. I can't bear to wear normal clothing a lot of the time because the nerves are too sensitive, just resort to staying indoors and wearing my nightdress. I just end up so worn out when I do go out, too. So, considering how limiting it is and that that's permanent, I'm kind of uncertain how much difference a revision will make, in terms of my capabilities, though it would probably help with the back pain, at least.

I'll just have to see what they say, I guess.
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Old 4th August 2014, 08:03 AM
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Rachie Rachie is offline
Maddy's Mum
Join Date: Jan 1970
Location: Kent
Posts: 1,498
Default Re: Mistake with pins

I'm so sorry to hear what you gave been through. Best wishes. X
Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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