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 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

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

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

Hey Lottie

Thanks for post. Sorry for the confusion and less than complete details about the exact issue. I am hesitant to post too many specifics online for slight fear someone may recognize my case, me, etc, and it affects my care. Doc's, nurses, insurance, etc. I mean. I know how unlikely it is but you never know.

To answer your questions:

Situation:
1. A patient (let's say me, for argument, lol) has existing RSD in upper limb (hand/wrist) and in leg 20 plus years, both caused by surgery. RSD is on same side of body.
2. Patient is having surgery on lower limb/hip not currently affected/inflicted with RSD.
3. Surgical team is planning on doing spinal epidural/anesthesia for surgery and post op pain medications. But as far as patient knows, no nerve blocks or care for existing RSD sites to prevent spread.
4. Patient is curious about pre-emptive measures that could/should be used to prevent spread to existing sites (arm/leg). Patient assumes existing RSD leg should be ok/protected because of the spinal. Spinal should possibly help prevent RSD flare in existing RSD site and "potentially" prevent RSD from happening to anticipated/new surgical site (hip).
5. Patient thinks that pre-emptive measures, blocks, epidural, IV or something PRE operatively, multiple modalities would reduce the chances of RSD even more. That calming the body down well before surgery is helpful, useful. Whether that is a block for the RSD arm, or anesthesia, injections/blocks to settle the body.
6. By pre-emptive we are talking about not just 20 mins before surgery but hours, or days (if medication would help reduce body's poor response to surgical intervention) whatever the protocol is.
7. Would you all feel comfortable only having spinal epidural/IV anesthesia for surgery and it would potentially stay in post op a few days but no other PRE-EMPTIVE blocks?
8. Patient has a letter from treating PM doc from several years back stating that for this patient, aggressive pre, and post anesthesia, blocks should or "could" be used to reduce chances of spread of new RSD etc. In this letter, multiple block types are mentioned as well as other things such as IV lidocaine or ketamine if it is needed (loosely written - as a sort of last resort)
9. The letter will not be followed by anesthesia dept, only some of it will but it seems none of the pre-emptive measures would be used.
10. PM doc seems to be backing down from his own letter and processes now that it is getting closer. He is aligned/works with the hospital and surgeon where patient is going so it makes no sense to back down from the letter and not try to give the patient same as what is in the letter.
11. The blocks patient was curious about would be whatever block is generally used on that part of that body such as Stellate GB or Lumbar SB etc. Patient was just told NO BLOCKS are planned for upper body. Not sure if they planned on blocks for lower body other than spinal. Here is a whole article about different blocks (not specific to RSD but useful info). http://prc.coh.org/ComRegNB.pdf

Thoughts: Perhaps they just don't worry about or block upper body if you are having lower limb surgery and have regional anesthesia and epidural for lower body. Maybe they think that is enough to reduce chance of spread from lower to upper because it is anesthetized?


As for medical literature, yes there are studies or articles about the use of pre-emptive analgesia to help reduce chance of spread. Unfortunately a lot of the stuff was written or re-posted with the findings from Dr Scott Reuben who has been outed by the medical community and accused of fraud.

Some links are here to other articles: Pub Med has some articles but I can't access them. These are not ideal but they do touch on the points. Especially the first one.

http://www.rsds.org/pdfsall/cramer_et_al.pdf

http://www.rsds.org/pdf/SportsInjuryBrochure.pdf

http://www.aspmn.org/Conference/docu...isarudolph.pdf

http://www.rsds.org/education/CRPS%2...-%20Chopra.pdf

Is this helpful or even more confusing? It would be great help to so many here I bet if there was a set post or thread that stays up all the time about RSD and surgery because I think so many people fear it, or don't have the right support or know what to do. End even when they do (like me) it is really hard to get the care and protocols to actually happen. Many docs/surgeons and even PM's when it comes down to it, push comes to shove, will tell you there is not set protocol (I understand that but...) but then on the other hand, tell you blocks are useful to prevent spread. Confusing. YES. Talk and action are two different things. I have seen them talk the talk but not walk the same line to get you care you need. Probably fear of law suit, hands tied by others in charge, insurance issues, more so maybe not a standard protocol for that surgery so it is hard to get. And plenty of hospitals say they are not really experience in xyz (blocks). How anesthesiologists are not well trained and versed in blocks etc is beyond my comprehension.

Thanks again,
Sigh... time to think about happy thoughts and smile. And pray!!