Re: surgery revision after fusion
Hi Debz, welcome to SSO
Crankshaft Phenomenon happens (as you probably know) when the front of the spine continues to grow following a posterior-only fusion in young children of about 10 and under. The back of the spine is tethered into place and growth causes the spine to corkscrew, or crankshaft. It can be avoided by doing an anterior surgery as well as the posterior one, but sadly this probably hadn't been flagged as an issue when you had your surgery.
I had my first fusion aged ten with a Harrington, 28 years ago - but I had the "two stage procedure" and have had no problems with my thoracic spine since. These days growth-rods have been developed so younger children can avoid fusion until they are older, and Crankshafting is very very rare.
The procedure to take down a longstanding fusion is usually very complex. Over time, your rods become firmly encased in bone and this means the surgeons have to break that bone away to remove the rods and then try to straighten and stabilise everything. I've known people who have had it done - usually for Flatback deformities - and it is a tough thing to go through, but some surgeons will attempt it if they feel the benefits outweigh the risks. It is VITAL that you are looked after by a surgeon who has experience in complex revision cases. Whereabouts in the world do you live? If you tell us we may be able to guide you to some more help.
As for using O2, i'm so sorry you're having to deal with this. We have a couple of members who use this daily so you are not alone
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.