So in MPS (and im sure in many chronic conditions) there is this semi-struggle to figure out 'do I really need this provider?' 'How many providers is to many providers?' And even if you needed a provider for a period of time re-evaluating at times and figuring out if that provider is still needed on the overall team... I know your thinking (a healthy person anyways those who've experienced MPS for isntance know better!) that how hard could it be to figure out if you really need a specialist as part of your group of providers or not? Believe me sometimes it should be easy but atleast with a disorder like MPS it's just not typically. Why? Well with MPS what is an issue now may not be an issue 3 months from now and whats not an issue in 3 months may become an issue again in 6 months. Add to this that specialists (atleast many of mine) tend to be so uber-specialized (Ortho (Plastic surgery)-hand, Ortho-spine, Ortho-hip for instance) and you tend to end up with lot of specialists who all begin with the same speciality but branch off in to secondary specialties or areas within their field. So it seems like you should have only 1 Ortho for many issues but in reality with MPS to get a dr who has experience you end up with 3 drs. Atleast with this field ive found for my own care that I can see these drs on an as needed basis and when surgeries are needed follow up with them in that post-surgery period. Sounds easy enough, sure but then you add in 10 or more other specialists, a PCP and you end with some confusion and in it all have to get these providers to communicate with each other. Some are amazing at communicating with other providers and others could use a few lessons. At the question well which drs do I need and which dont I need? Sometimes you dont know if you should see a specialist (we'll stick with Ortho) and because your care is so managed by specialists you tend not to see the PCP very often and so they tend not to be as involved and cant always guide you when it comes to symptoms. I keep coming back to the lower spine issues back in may and the un-expected lumbar laminotomy (lamina removal) because of the nerve roots being compressed. Generally with MPS imaging is done every 1-2 years to make sure there is no compression going on but this hadnt been done and I cant exactly blame any dr alone because as the patient it is semi-my responsibility to be on top of my own care to. But if we had caught the compression on imaging would we have been able to prevent some of the side effects of the surgery? (believe me im not blaming anyone and im not blaming my neurosurgeon) I just wonder if it would have been better to catch it sooner but I dont know the answer and I dont know that we would have done anything different. I guess thiese are just things that a person wonders and part of the 'how do you know' puzzle when it comes to care, providers, and communication. It sure would be nice if someone wrote a 'how to navigate alot of providers and lack of communication' manual! :)
So my whole reason for the wonderings above actually have more to do with a question I asked my neurosurgeon and which she graciously answered. Relating to the above ive wondered about my Neurologist and given it is quite fragmented wondering with having a Neurosurgeon managing my shunt now did I need a Neurol to manage the autonomic stuff and spine stuff or what did other (non-MPS) pts of my neurosurgeons do when they have non-neurosurgery related neurologic stuff? My neurosurgeon responded that she felt pretty certain she could help manage these areas for me and if she did need any help figuring something out she could talk to the Neurologist she works with on her complex shunt pts. (and who I met this last hospital in-pt stay prior to the VP shunt) to get his in-put. This is great news as typically neurosurgery and neurology is another area where the neurosurgeon manages surgery and then the neurologist manages all the other neurologic issues. This effectively means i'll be able to have just one neurologic dr vs having my neurosurgeon and having my neurologist. My dr will help manage the MRIs and as well any other issues we have come up and need their help for. I am happy she will do this and to have one less provider and to top it off this neurosurgeon is so good at communicating with/working with others that I feel like it will be ok and be a good thing. :)
I'll udate from NYor soon,
Erica
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