Not quite four months after first stage of two stage revision -
I saw my othopedic surgeon this past Thursday. He confirmed that all the bloodwork and culture results are very promising and as far as we can tell, the infection has been killed. This particular bug (S. lugdunensis) however can hide away for years and then come back, so we can only be 75-80% certain.
The plan is to put in a hinged knee in January, but because my surgeries have done so much damage and created so much scar tissue, there will have to be a transplant of tissue from the gastrocnemius and a skin graft from a donor site somewhere else on my body. I'll then be in a brace for some weeks while the graft heals and everything connects. Give the trauma from this surgery and the capacity my body has to generate scar tissue, he says I will be lucky to see 80° flexion. Extension has never really been much of a problem for me, and given that my leg will be kept straight for some time (and will have been fused perfectly straight for 5+ months beforehand), we don't anticipate any extension problems.
I've done a lot of reading on this forum and a few other, and it seems that many people going through similar surgeries are seeing more like 40° flexion, and that would be a real problem in terms of being able to drive, sit in a chair, paddle my kayak, etc.
If this doesn't go well (say the graft does not take) then the only alternative seems to be an above-kneee amputation. We'll know about the graft within a matter of weeks, so I could end up with this surgery and the amputation being done relatively close together in time, if things go poorly.
So my main concerns are:
1) The graft doesn't take and I have two massive surgeries almost back-to-back, or
2) The infection comes back at some point and I have to get an amputation, or
2) The range of motion ends up so poor that I would have been better off with the amputation,
and therefore I wonder if I would be better off just going for the amputation right away.
On the whole scar tissue subject, I have posted in the past that with a family history of rheumatoid arthritis and many genes associated with the disease, I thought I had some understanding of why I generate so much scar tissue (people with rheumatoid arthritis are over represented among arthrofibrosis patients.) It turns out that I have psoriasis of the nails as well. For the first time in my life, it appeared late summer into early fall, perhaps triggered by the antibiotics, the infection, or the trauma of the latest surgery. Psoriasis, which has a large genetic component, is also associated with arthrofibrosis, and is considered another autoimmune disease along with RA.
There have been some studies done, in both rats and humans, in which the administration of the drug kineret (used to treat both RA and psoriasis) prevented and/or reduced arthrofibrosis. Nothing much seems to have been done with it lately, and the researchers involved seem to have gone on to other things.
There is a doctor in the UK that prescribes Kineret (also called Anakinra) and one of his patients posted on another forum about getting fabulous results.
Kineret does suppress the body's ability to fight infections, and given that I've just (maybe) rid myself of an infection, that is concerning.
So, a few questions for everyone here:
1) Any more information on the skin and gastroc muscle graft procedure in cases like these? I've already searched pretty thoroughly through the Bonesmart site and several other forums so I wanted to know if someone has new information not previously posted. The results from these procedures are often not encouraging, but posts on a forum are not usually a representative sample.
2) Anyone know a good rheumatologist in the Boston area that works with surgeons on these kinds of issues (arthrofibrosis)? It is worth noting that Dr, Noyes' knee clinic in Ohio routinely works with a rheumatologist for his arthrofibrotic patients.
Thanks, all.
United States
