I have these questions if I may:
- Why 4 surgeries? I would think nail replacement alone and re-osteotomy would have been sufficient and this could have been done in one extra surgery.
That's 4 surgeries including the original one. Initially the distraction problem appeared to be only affecting the left leg and the idea of premature consolidation was entertained. The second surgery was Dr E's attempt to solve the problem by cutting just the edges of callous that was forming. This did not work. The theory was then that the nail must be faulty and so the third surgery was to replace the nail. There was some discussion about replacing the right nail too.
However, the decision was made to replace the left nail first. The nail was replaced without creating a new Osteotomy site. This somehow worked but analysis of the removed left nail showed that it had in fact been fully functional. Later the right leg was having the same distraction problem and so a fourth surgery was performed to replace the nail in the right leg. This time advice from Dr Bacarese-Hamilton (whom I will henceforth refer to as Dr IBH) was followed and an osteotomy was created that was more distal than the original. All surgeries were performed by Dr E. After some initial resistance on the part of Nuvasive, they had agreed to provide the replacement left nail for free and after Dr IBH's involvement to also provide the right nail for free.
- Was the reason lengthening was not happening properly due to high level of osteotomy or due to pre-consolidation or both? If you had gone to Dr Ian sooner, (before pre-consolidation) could the lengthening have continued normally with more surgeries?
Actually in fairness to Dr E - there were a number of factors any one of which were likely to be insufficient to create the problem but when combined they guaranteed it. The factors were:
- a decision by Dr E to start lengthening at 0.7mm a day instead of the usual 1mm a day.
- Faulty ERCs - each replacement meant time lost lengthening
- Dr E not recognizing the problem in time and adequately dealing with it
- Use of the older ERC model which has very poor diagnostic capability - the latest ERCs have smartsense technologies which can detect when they have engaged with the nail and whether the nail is distracting.
- I do seem to genuinely consolidate much faster than expected. In fact after the fourth surgery there was no grace period before starting lengthening - I started lengthening the right leg the very next day after surgery.
- Did Dr E do the remaining surgeries? I feel Dr Ian would have been a better option going by your testimonial.
No Dr E did all the surgeries. Dr IBH was only involved after the third surgery and yes I had the same thoughts at the time but whilst Nuvasive had agreed to provide a replacement right nail for free to Dr E, they had not extended that courtesy to Dr IBH.
- Were there Nuvasive reps present there during your first surgery?
No. However, they were present at the third surgery when the left nail was being replaced.
- Do you know the volume of cases Dr Ian handles, especially CLL?
I don't know, but please free to contact him.
Congrats on achieving your goals despite the complications. It's well worth it
Thanks! It was a roller coaster of a ride but we got there in the end. And yes it is worth it.
I should also say that Dr E is not a bad surgeon and certainly far away from the horror stories I have read on this forum. I think he was perhaps a little too complacent in the beginning and then got stuck in the mantra of 'It's never happened to me before' instead of really trying to understand and deal with the problem. Once Dr IBH was involved Dr E became much better again.