Thread: Please Read
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Old 11-10-2015, 07:41 PM
Neurochic Neurochic is offline
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Join Date: Sep 2011
Posts: 246
10 yr Member
Neurochic Neurochic is offline
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Join Date: Sep 2011
Posts: 246
10 yr Member
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Quote:
Originally Posted by newyorkmets View Post
Thank you BioBased, littlepaw and DejaVu BioBased, I am glad you are on your way to regaining back some mobility - there are few like you who make it a point to share everything and anything that has worked even the slightest, in your signature w. modalities etc. littlepaw, not many can personalize their discussions as well as you can and that makes us all feel so important and thankful to be talking to you. I think it's great you're able to do so much for in the way of reading/literature to be informed and it's something I have to get better at myself. Deja, my prayers are that you're feeling better in spite of your recent flare up and am glad to hear the good news with your doctors. Thank you for the link as well, I'll now have something to look at tonight! My appointment is soon and I mean very soon, so I'm asking for some more guidance and support. My concerns re: the SCS are the down/recovery time from incisions and other horrifying things I've heard about it. I'll definitely inquire about the changing technologies of neurostimulators and if I'll get one that's more up to date and less invasive. I hope not to startle my team with so many questions and that they know I'm trying to do what's best for me and not trying to stand them up or teach them anything because I am aware that they are the experts! Really, I just need some more options on the table and probably a set schedule of where it'll go from here...
for the rest plz feel free to chime in NYM
You need to rapidly realise that the people who want to implant an SCS are doing it because they get paid a huge sum of money to do so. You are young, so you probably haven't realised yet that its naive to think that these people are either experts in your condition or are suggesting doing things because they are actually in your best interests.

I know you think that they are looking out for you and are experts but I promise you the chances of one or both of those things being true with CRPS are very slim indeed. You need to go and learn all you can, as rapidly as you can, so that you can make properly informed decisions. You should question everything and push your doctors very hard for evidence based, logical, and detailed answers. Chances are you won't get any, they will try to bluff or they will become irritated and blame you for not just doing as you are told - if that happens find a new doctor.

I have had CRPS for a long time and have dealt with countless doctors and other healthcare workers - the most important thing you can do to improve your chances is learn everything you can about this condition because if you don't know at least as much or more than the doctors, they can (and will) tell you any old garbage to either get you out of their office or to flog you the latest thing they are making money from. The evidence for SCS effectiveness in CRPS patients is very limited (very few studies with tiny numbers of participants and reliance on small studies in people with entirely different medical conditions like strokes and back pain) and the long term evidence is that they are largely ineffective (long term here is 2-3 years from implantation). There is no data available yet on which anyone can assess or make claims for the newer types of stimulator which even more impressive claims are being made for.

With the greatest respect to everyone here, the best place to get your knowledge is by working your way through the published medical journal articles, case studies and research papers. RSDSA.org has an online library of free to access papers that will give you a start but a lot of the more recent stuff isn't included there and has to be paid for if you want to read it. If you have access to a university library whee they have subscriptions to medical publications and databases, you may be able to geta anything at all for free.

Where there have been meta-studies, these are incredibly helpful in helping you understand which research is reliable and which isn't because they should always rate the quality, bias, content and methodology of each piece of research that is included or discarded. The globally acknowledged gold standard in meta-analysis is to look at Cochrane Library papers. This forum and similar sites have a place but they do give rise to all kinds of assumptions, misconceptions and urban myths - you need to get as much 'hard' information from scientific sources as you can. Its by no means perfect but it is the best resource you have access to when you are going to have to deal with doctors and take an active role in your own care.

You rapidly need to learn how to self-advocate in a robust and assertive way and challenge everything you are told albeit in a constructive and polite fashion from a base of good quality factual knowledge. I would recommend that you delay any SCS decision until you have researched the evidence from medical, scientific sources first.
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"Thanks for this!" says:
BioBased (11-10-2015), DejaVu (11-10-2015), Littlepaw (11-10-2015)