Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 07-09-2014, 08:42 AM #16
Burnbabyburn Burnbabyburn is offline
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Join Date: May 2014
Posts: 78
10 yr Member
Burnbabyburn Burnbabyburn is offline
Junior Member
 
Join Date: May 2014
Posts: 78
10 yr Member
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Shelly

Thanks for your reply, i appreciate all the support here.

Yes, I have that option, but my issue is, and has been, that it is equally as difficult to get the care I hope for no matter where I go.

The reason I chose this team of people is because my PM is either on hospital staff or affiliated with it, knows and works with my surgeon and they were the ones (along the anesthesia dept) who seems to actually get this better than the other doctors/surgeons and be in my corner to help me.

I am stuck between a rock and a hard place because my PM doc is not affiliated with other hospitals, and at least he has some input here, knows my case, knows me, although it seems I still fighting hard to get what I think is reasonable.

If I chose another hospital, I am on my own. Already have seen 4 surgeons to get me to this point, hard to diagnose and decide what THEY thought was best. This collection of people now were and have been my best bet and a good choice so far (BUT...) it feels like now that it is getting closer, they are backing down. This happens a lot in my case or from where I stand/sit/limp lol. I guess standard protocols for "regular" patients is all they do or plan to do (unless I make more headway) even after lengthy conversatations, complex history and over a year of planning and discussing what would need to be done if I were to have this surgery given all my other issues and RSD in half of body! They do agree "aggressive pain management techniques" are part of this, but that is post op. I am equally interested in pre-op handling of my system and body, pre-emptive modalities.

Just last night I was reading threads here and came across so many where people's experiences were so different than mine. I am tickled pink that others are able to get IV, injections, epidurals etc, ketamine, in hospital stays with blocks, etc. I seem not be able to get the same things and I live in a an area with top doctors and hospitals, many of them. I have changed docs many times to find the help I hope for. I love my PM doc (basically I am only on some meds) but I like him, trust him, but I need him to help me push through and get the treatment that is recommended for RSD/surgery etc. It should not be this hard.

Heck I am ready to go see a VETERINARIAN and let them do it, HA HA HA HA HA HA!

Thank you!!!

Quote:
Originally Posted by fbodgrl View Post
Do you have the option of telling them if they will not do the blocks and follow RSD protocol you will go to a different hospital, anesthesiologist, etc who will?
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