Throwing something strange out for some peer review. I know we have our doctors who we prefer whether they are backed by WACMA, CSF, ASAP, etc or another CM/SM organization or center but I am thinking about (since having nasty flares and some significant worsening of some symptoms as well as some new ones) about going to a local NS who is a member of the AANS (American Association of Neurological Surgeons), who has some experience with CM but it is not one of his primary treatments as the doc who were mentioned above.
The doc who did my decompression, some know who he is - others don't and I want him to remain anonymous just as not to discourage anyone from seeing him do to my somewhat negative feelings towards him and my major feeling of he dropped the ball big time in follow up care. Anyhow, the "new" NS I am looking at is familiar - not an expert with CM and since being decompressed (Less than 1 year) do you folks think it would hurt to have a fresh set of eyes to look.
I know it is mostly a personal decision but experience of helps helps make informed judgements and we are in this together, secondly if he is better than just familiar why not give him a chance he might be one who reads literature and studies the knowledge banks but might not have cases referred to him because he is not commonly known.
thoughts, opinions, questions, concerns, advice------throw it at me - all I want is to get better not worse and I do not like the path I am on
If you’re not happy with the path then change it. It can never hurt to hear what someone else has to say
I say if you are not feeling optimal then do what it takes to get to feeling better. I know there are bound to be really good doctors out there who are not "specialists". Try him and see what you think. If you think about it even the specialists started out with one chiari patient!
BTW...good to see you back on the boards! Sorry you are having troubles. I have been wondering about how you were doing and how the new baby is! Prayers to you!