The game of telephone around the CCI stuff is really frustrating. This is such a nuanced and technically complex topic.
1) No, I did NOT have a Chiari malformation
2) The woman who tragically died last year in Barcelona during fusion surgery had vEDS, was given 50/50 chance
1) No, I did NOT have a Chiari malformation
2) The woman who tragically died last year in Barcelona during fusion surgery had vEDS, was given 50/50 chance
of survival
3) The case of the person who recently had a very poor outcome had surgery in England and had TWO surgeries at once: a decompression surgery for Chiari plus the fusion. She also had vEDS
3) The case of the person who recently had a very poor outcome had surgery in England and had TWO surgeries at once: a decompression surgery for Chiari plus the fusion. She also had vEDS
4) If you do not have vEDS the risk of dying from fusion is probably < 0.6% (by comparison, risk of death from my thyroidectomy was < 0.06%, so yes, it's 10X riskier on average)
5) I imagine that risk is much lower if you do not go to an average surgeon
5) I imagine that risk is much lower if you do not go to an average surgeon
None of this changes the fact that these are major, major surgeries. However, passing on incomplete or inaccurate information heard from someone who heard it from someone can be really harmful, particularly to the people who NEED these surgeries.
(There have been two metastudies on craniocervical fusion surgeries. One looked at 2274 surgeries (no deaths reported). Another metastudy of 799 cases reported 5 surgery-related mortalities (0.6%).)
