I wrote another epic thread (QT’d here). It has 74 tweets, twice the number it took me to wrestle with the nature of evil, which tells you just how complicated the topic of surgery + #MECFS is 😂. I’ll use this new thread to answer questions.
This is wonderful. A NS I consulted with at Stanford told me a lot of his patients wear cervical collars when they get viral infections. I’ve heard patients say neck instability gets worse when they have infection.
The common demnominator may be inflammation. Perhaps it is possible to improve stability by reducing inflammation? e.g., by treating infection, treating the guy, or taking mast cell stabilizers/anti-inflammatories? For some, that may be enough. See, e.g
“CCI is about a lot of things.” This is too true. Again, my tweets barely scratch the surface. There are multiple varieties of CCI, what are primarily jaw problems. There are at least 3-4 different types of tethered cord. It’s complex as hell.
This is really important, and I have had numerous conversations with my MCAS doctor about this. We both think the relationship between spinal problems and MCAS is bidirectional.
Instability, spinal fluid leaks, tethered cord—anything that makes mast cells in the dura unhappy—can fuel mast cell activation. Treating these structural problems has improved or completely resolved MCAS in some of his post-surgical patients.
At the same time, the constant activation of mast cells can weaken connective tissue including ligaments in the neck and the dura covering the brain and spinal cord, so treating MCAS may sometimes resolve the structural problem.
If you’re looking for simple, linear relationships you’ve come to the wrong place!
In all likelihood, some cases will improve or resolve simply by treating MCAS. Some will *only* improve with surgery. There is probably a wide gray in between.
In all likelihood, some cases will improve or resolve simply by treating MCAS. Some will *only* improve with surgery. There is probably a wide gray in between.
First and foremost, join FB groups. Then you can connect with patients similar situations. At minimum, every patient who is considering a craniocervical fusion should also have a plan for what to do if they need a tethered cord release surgery, too.
30% of CCI patients may ultimately need a TC release. You should also at least be aware of the other possible diagnoses. Patients in Europe can use remote consultations, for example, to get opinions on diagnoses any single neurosurgeon may not treat or test for.
That way, if you decide to have surgery, at least you are going in with a more complete plan. If you decide to wait, either way, you will still more informed.
