Hi
For those of you who have had surgery on NON RSD limb, did you get them to block off existing sites before, during surgery? What pre op care did you receive?

For instance, if you are having leg surgery and your RSD is in your arm, did or would you expect or ask to have them block or pay attention to that RSD arm or would you only expect them to worry about the leg/surgical site?

In lower body surgery I guess they feel an epidural/catheter is enough and they don't worry about the upper body/limbs existing RSD getting worse or flaring?

I am running into confusion and tough decisions and am getting push back from pain mng doc and anesthesiology dept at hospital where I am having surgery next month. They are making me feel like I am crazy asking for blocks or care for existing RSD sites. The surgery is on a NON RSD limb.

They seem ok and keyed in with post op management techniques just not pre op. I believe pre op modalities and calming of the system before surgery is very important. I don't feel they will do anything much for me in this arena.

thanks have a great day

Great question. Watching this thread with interest as I will need a knee replacement in the future and am nervous about how to handle this pre-operatively. Couldn't agree with you more that pre-op care is essential to preventing CRPS spread. Getting many different opinions on this....

In my case,have 4 surgeries after rsd diagnosed, my rsd is on lower limbs and possible arm spreading but not confirmed yet.
The first 3 were to position scs spinal cord stimulator ,trial part, position one time int buttocks but experience technical and personal issues and the third time to repositioned scs battery from buttocks to abdomen, the pre operation consisted in IV with antibiotics to prevent possible infections, zofran for issues with the antibiotics or anesthesia can happens to some people ,the a pain killer during the whole procedure , so far the pain was control, I had to tell the nurses' not to place the IV in the arm that hurt the most because I have rsd / crps if they don't know what I meant ,I don't let them do it until I explained and get it I the right place .
My four surgery was same process but was for gallbladder stones ,I needed to removed my whole gallbladder due to the abdominal pain I was suffering ,all occasions a long chat with the anesthesiologist was very detailing and they were aware of rsd or at least have some knowledge ,keep in mind rsd can be spread not only for surgeries but also for any other maybe minor reasons non expected but we all want to make sure we are going to be ok, even my dentist have to take extra measures to do at least a regular cleaning ,nothing is like before and sure we are scare and for many paranoid about it but to me ,I don't care what they think,I'm the one with the pain and the last surgery was real painful and I was not going to control that kind of pain with tramadol only, I have the two last surgeries one month apart,so pain was way different but was control by the anesthesiologist , it was the first time for me getting dilaudid a c2 level drug during the surgery and as soon I woke up I called my dr and ask for something stronger than tramadol ,I was for few days I. Tylenol with codeine otherwise won't be able to control that pain.
We had to be paranoid and scare and don't give a s....h about if they think we are getting to extreme we don't know how the body will react, like I mentioned in one past posting ,lately I new about two different lady's getting rsd one from a blood drawn And the second by having a surgery on her arm few months early and the nurse took the blood pressure in that same arm and she gets rsd,so yes happens and can happen to anyone and that's why researches are made and existed .
If they don't get what you are telling them, call your insurance and get a new dr and new medical group,people who do care about your pain,is real,is also true the brains control everything but eve though it happens that way,pain can be spread anywhere without we even noticed ,taking extra measures is ok and will never be too much, peace In your mind is what you need not to keep still worrying about to get worse,is not working,get a second opinion and also a third if needed, you just want to avoid get worse,we all want to get better not worse,so keep insisting ,dr and anesthesiologist will understand if they do care.
Wish you good luck and hope soon you get a better results and don't give up and always demand extra care.
Blessing and gentle hugs with love Jesika .
Hope that helps you a bit.
Ps forgot to mention, for any new procedure you should be actually get general anesthesia the tricky part will be the recovery,in my cases I was following the routine of antibiotic,zofran,ranitidine I did not mentioned ,obviously IV potassium or the IV the dr suggested,and the pain killer as soon as you get in the operating room and after the surgery,general anesthesia will avoid you pain and the pain killer will keep pain away after,also make sure you have enough and stronger pain killer at home or provided new prescription by the surgeon. I normally don't take anything stronger then tramadol ,that's why dilaudid and Tylenol with codeine were add on my last surgery,dilaudid during surgery and recovery area,and Tylenol with codeine couple days at home,but normally my scs,tramadol and meloxicam helps,to manage the pain, but you need to make sure the really understand those steps ,so far I had three different surgeons and they followed same steps,I only asked for the ranitidine for stomach pain and Tylenol w codeine when I realized pain will be an issue for the first time.
Getting the IV connected is also to be care about, nurses many time want to do what they want so make sure you spoke clear with them,other than that I had no issues, and still with pain on my affected injure foot but like I said it won't be getting any surgery until rsd is controlled in extreme cases the dr do surgeries or injections there ,I had two Injections directly in my foot area but he numb the area with an spray and the injection was guide with and ultrasound machine,only bad reaction, rsd makes your skin so sensitive, the sprays burns my skin and that hurt but is because any kind of too cold or to hot items hitting or apply on rsd areas will react because of the skin being really sensible.hope this clarify more,last night I forgot to mentioned .

Thanks for the post!!

I feel like I am fighting the system and docs keep thinking I am making something up that does not exist when it comes to what is recommended or suggested for RSD/surgery. In spite of having a clear cut letter from my pain m doc stating what measures should/could be taken re: myself and surgery. Unreal. I am so tried of fighting for this, every time, and going back to basics where people act like there are no general standards. UGH
thanks

Thanks so much and you sure have been through a lot. I am sorry for all the surgeries you have had to endure - it is a tough way to live but you sounds strong and like a good advocate for yourself.

I have been told though, that regional anesthesia is way better than general for RSD. I have had general twice and contracted RSD. I have not had regional nor spinal epidural but I will this time. I am nervous have such serious surgery without general but....regional is supposed to be better...

again thank you for all your help. I am trying to educate my team of people and get them to write things down, and put in my file or chart but it is useless. I may just jump off that table if they refuse to take care of basics....or ignore existing RSD limbs

have great day and i appreciate all of your word/help

I did have several lumbar blocks but all under general anesthesia , the local anesthesia I'm not sure how will work I'm sure I will be scare the only experience I had is the dentist but still,she use topical first than an injection for cleaning with rsd any pain should be avoid, I'm thinking rsd can be spread do to a lack of pain care after the surgeries and recover , I experience the first time such of pain after my gallbladder surgery and finally hit the wall and realize my body don't longer manage pain like before, having several lumbar blocks and three surgeries will be enough pain but wasn't after I woke up from my late surgery,I insist ,recovery pain management is essential and makes the difference for any further complications which obviously we don't want.
I learned to deal with flares and pain for a while and still struggle even with my scs, many people with rsd don't have scs but in my case was recommended and my injury ,original can have surgery if rsd keep being active so is a long way to go and still to suffer but bone to bone pain will always triggers my flare ups so is a never win .
Hope you soon get the help you need and deserve , takes time to make people get educate and understand what really rsd means to us . Best wishes form Jesika .

Thanks my RSD friend.

I'm just hoping to have a better outcome with this surgery than the others!!! Time to put on my warrior face and stay positive and hopeful.

You are awesome, thanks

have a great day

Hi Burn, I too am watching this topic closely, though I notice you have started a new thread. I'm sorry, but I have gotten a little lost along the way on this. It is such an important topic and I wonder if you would be willing to restate the pertinent details. Where are your CRPS sites? Where will they operate ? Where are you requesting the block? What kind of block would they use?

I have had a total of 7 surgeries and live in fear of getting CRPS spread if I ever require an eighth.

Do you know if there is anything in the medical literature about this?

Thank you for your contributions to this important conversation that is relevant to so many of us. Wishing you wellness ~Lottie

Hope,you can get want makes you feel safe and also feel better ,if your getig lumbar or ganglion block ,general anesthesia is required and if any other block try to know first what they are refineries to and also get pre op preparation. Always speak up and never give up on demanding what you need and makes you feel secure, no worries , if nothing get where you ant it,change dates and get dr reschedule and also know exactly the goal for every treatment.
A journal is a good idea to keep and write after any dr appointment the main agreements you made and who will, be done , all documented for your own records, also will help you with recording improvements, side effects,changes in mood or behavior ,everything you need to discuss with your dr in the future will be a fact note in the journal. Good luck and hope everything goes well, with loving care ,Jesika .

EEVO - a journal is an excellent idea!