Went to see the surgeon today about having to have my gallbladder removed. I prefaced the whole meeting with telling him about having RSD and my concerns about surgery and spreading etc.
He was completely honest in his lack of knowledge about RSD and in fact had never heard of it.
Needless to say, he does not feel comfortable handling my case. I see my primary doc tomorrow and he and I are going to put our heads together to find an RSD specialist instead of just seeing my pain management doctor for treatment.
Yesterday when I went to the pm doctor and asked her about surgery precautions with RSD she literally shrugged and said, "honestly, you are more well versed in this condition than we are. We only treat pain."
So while I appreciate everyones honesty in their lack of knowledge..it kind of makes me feel like I am out in left field for treatment.
My goal is to find someone who can be on board for when things like surgery or ER visits come up and will have standing orders in place that other doctors can use as a guide.
At this point I don't care about travelling...I just need to find someone who knows what they are doing instead of a pm doc who is just throwing meds at me and trying to talk me into a scs.
What a frustration..but I am holding on to hope that I will find the right doctor for me.

How urgent is the gallbladder surgery? You REALLY want surgery to be the last possible option with RSD. Have you explored ALL possible options? I'm just saying...

My doc is not a "known" RSD doc. But, he is incredibly well versed in RSD, is dedicated to keeping up with all the latest research, and has had many RSD patients over the years. I find he is able to dedicate much more time to me than most docs would, let alone an "expert." I travel into a major city to consult with an RSD specialist, as well. Absolutely, pursue the best care possible, but don't overlook all your options locally. When you have an emergency, it's priceless to have a doc nearby you can count on.

Hi,

For the heck of it I googled " Precautions to prevent CRPS spread
when having surgery" Follow that format and see some posts, one
is from RSDHope. I noted that article mentioned RSDSA. It has been
a awhile since I have been at the RSDSA site but they have a search
box and if memory serves me a list of Docs but I don't know haw extensive
the list.

I did note one post from a fellow who had CRPS whose doc advised he
have a ganglia block prior to surgery. This was what was done for
my daughter when she broke her CRPS arm but I don't know if her PM
Doc advised or her surgeon. Her surgeon believe it or not was the
first one to beleive she had CRPS when he did the surgery the first time .
Although we knew about the Vitamin C from our research. the surgeon
also told my daughter to get on Vitamin C when she broke her arm.

One word of caution however should you have a ganglia nerve block prior
to surgery. The doctor who puts you to sleep for surgery would be the Doc
to give you the block. These Docs usually feel around relying on their
fingers to fiind the point to insert the needle. If you do go this route and
they did try that, you say "no way," That you want the insertion point
found through a florascopy I think it is called but I might have mispelled
that.

My daughter says she endured more suffering and more pain not by the
actual surgery but at the hands of one of the docs who was trying to
feel around to find the right point. When she asked him what he was
doing and responded she insisted they use a florascopy. Her own PM
doc used one to ensure better accuracy. Nevertheless, his attempts
at saving time and just feeling around had resulted in additional pain
and recovery time.

Keep in mind people in the medical profession are no different than the
rest of humanity. Some excercise extreme caution and responsilbity
while others rush through a procedure just wanting to get the job done.
Make sure those whom you are dealing with know about your condition
educate them before hand and it would not be a bad idea when you
hand them some educational materials you take your hubby with you and
have him wear his uniform.

OK so if travel is ok for you ..how about looking into NY hospital for special surgery ..they have a PM group that specializes in RSD.. and are known obviously for their surgical teams.. see PM then let them find you a surgeon. also NYU might help locate the dr,s you need.. as long as your insurance is accepted.. give it a try.. also linked to nyhfss. is columbian presbyterian.. again RSD specialists are on board.. and you won't need to leave the state.. give them a try see how it works for you(I pray well) let me know.. good luck

This made me laugh!