Hello
I did start another thread a week or two ago, & am VERY grateful for the help and advice I am getting. SO grateful for Tessa and VRAE etc. TY!. I'm inching up on setting a surgery date for hip replacement. I need to see PM this week and set date. I currently have RSD in LEFT leg, LEFT wrist/hand, and it affects other body parts, but it is heavily on left side. MY HIP SURGERY IS ON RIGHT SIDE.

For anyone who has had surgery WITH RSD present, or who has contracted RSD directly from surgery, & had to have more surgery, what protocols did you have done before your surgeries to prevent more spread or RSD? This is inpatient HIP SURGERY! And I have other health issues, connective tissue, fibro etc. If you could have your doctor write down a protocol to follow, what was it? I am looking for a few sentences, paragraph, or step by step procedure to follow so that I can try and tell my surgeon, PM and anesthesiologists what I would like them to do in the easiest, most clear way. Just to say that I need extra care, or this or that, casually, is not enough. I know no one thing is standard, and there are no SET protocols, but what did you have done for you?????

I am stressing a little as I narrow down on making surgery date and talk to my PM tomorrow. From your experiences, what did work, what did help, what steps did they follow pre, during, post op if you were admitted for serious surgery, not outpatient.

FOR EXAMPLE: this is the type of language I am looking for....

"Patient x has a medical condition(s)_____, and ____which require careful/aggressive/additional pre and post op pain management procedures. It is highly recommended that prior to surgery, patient x is admitted to the hospital 24 hrs before surgery for a ______ (epidural cath...etc) and ___. Patient x has RSD in ___ limbs which should also be monitored (whatever) Pre op patient should be taking, ___ med, surgery should be done with IV, cath, etc using ____meds, and (any kind of blocks suggested) During surgery, (precautions), and post op patient will need an IV cath (whatever is recommended) kept in place for 5-6 days, alone with lidocaine, KETAMINEm blah blah, and blah lbah meds to reduce to chance of spread, whatever. Patient will likely need extra 3-5 days in the hospital based on __- and ___ conditions.

I know I rambled, sorry, I woke up tense and nervous about moving forward...but you get my drift. I am looking for guidelines so my PM and i can have a written protocol. I have contracted RSD twice each directly from surgery, and this has been 25 plus years of RSD. Surgery is always the event that leads to RSD for me. Brutal, scared, a little freaking out because no protocols were followed for me except a nerve block pre op, and it was useless and i came out with full blown RSD 24 hrs later. Aggressive treatment post surgery and diagnoses did nothing, so yes I AM shaking in my boots, lol, ready to barf worried about being unprotected.

Anyone who has had this, can you please, in guidelines or instructional terms, suggest what your letter would say to your insurance, docs, anesthesiologists????? My fear is if I go in with only one plan, and they don't like or do that plan, I want to be able to have a few options and tell them that I know xyz people who followed zxy protocol and reduce spread or avoided spread. Please help....Did you have a written protocol?

Excuse my typing and rambling, I am going on no sleep and crazy pain night...for like 6 months, lol.

HUGS TO YOU ALL!!!!!!

What it would probably take is a dx from a experienced neurologist...

Thanks Russ

Yeah I don't have a neuro. I know right, lol. I can't find good help.

I just don't understand how people who have had surgery, in way more remote places than where I live, had gotten these so called protocols before surgery, during, after and I am like some lone wolf howling at the moon begging for doctors/surgeons to help as if I am on some deserted island with no good care or willingness to help me, and so far, it has been near impossible.

I am so happy other people have gotten support and been good advocates for themselves. Truly I am. I guess I am just way less effective a spokesperson for myself. I try and try, I trust that this time I WILL get er' done as they say and get some support and help from my surgeon, PM and anesthesiology dept. I can only pray and try and pray and try and beg, a little. :-)

thanks

I had a bunion surgery that started my rsd in my left foot up to my knee. I have had three surgerys after. So this is what I know STOP THINKING about the what ifs and start thinking and telling yourself you can do it you will be fine but know you will have a big set back but keep moving. Keep the idea going you have to use it or lose it! Hands fingers anrms toes move them all. * do daily stretching you may not want to but you will rest better and keep what you got ** increase your vitamin C before and after. I did have some kind of block put in my ankle after I had the iv in for a bit before surgery.. I hope this helps. A good diet is always good they say processed food is even worse for rsd...

Burnbabyburn:

Gotta second Jenna on everything above. What a great post from someone with tangible (unfortunately)experience!

(Non-medical professional disclaimer applies to all of the following):

RSD doesn't magically transfer to new sites via the nervous system going haywire; it transfers via free radicals in the bloodstream. The trauma from surgery causes tons of inflammation locally to the surgical site.... and what's inflammation? Swelling and increased bloodflow in response to a trauma!

Supplementing with antioxidants/free radical scavengers (like Vitamin C as Jenna mentions above) before and after is a very, very good idea. Other options include NAC (N-Acetyl Cysteine), Vitamin E, grape seed extract, and many many others. (VicC is a former poster here for whom I have muchos respect who swore by grape seed extract.)

I don't need to caution anyone about the dangers of supplementation without guidance of a doctor/medical professional, but like many of us here, I'm very "disappointed" (understatement) by the lack of support out there from the medical establishment.

I've personally supplemented with Vitamin C and NAC. 600 mg 3x a day of NAC for 90 days when I first got RSD, and I cycle Vitamin C on and off now as a regular supplement to support my immune system. The general warning in super-dosing Vitamin C is that it can result in kidney stones. There is mixed research on that. It's never happened in my experience.

Another thing Jenna mentioned was avoiding processed food - she's right on point there too! Bigtime unpaired electrons (free radicals) result from processed food, artificial sweeteners, etc etc.

Last but not least - the mental part. Always easier said than done but being confident that you are doing the right thing for you is the most valuable tool you have.

Reflex Sympathetic Dystrophy(RSD) also known as
Complex Regional Pain Syndrome (CRPS) is a chronic
condition characterized by severe burning pain, pathological
changes in bone and skin, excessive sweating,
tissue swelling and extreme sensitivity to touch. People
afflicted with RSD/CRPS are extraordinarily sensitive to
certain stimuli, such as touch, movement, and injections.
Patient Tips
1. Bring a written copy of your medication regime. It
is important to verify whether your medication regime
can be taken care of solely through use of the hospital's
pharmacy. Some medications may not be part of the
hospital's formulary.
2. Avoid having ice applied to the RSD-affected limb
3. Instruct all hospital staff to always ask before touching
you!
4. Request that the surgery protocols be adjusted so
that the pre-op shave be done after anesthesia
(catheter is in place for epidural or whatever). It feels
like a lawnmower has been run over your legs when
they shave without anesthesia.
Patient Room
1. Whenever possible patient should be in a quiet part
of the hospital
2. In a semi-private room, patient should be in the second
bed to avoid inadvertent bumping
3. A Zone-Air bed should be used (adjust mattress pressure
to patient preference)
4. Heat and air conditioning should be well regulated
5. Standing orders should be issued for patients to have
warm blankets
6. Foot Cradle to hold bed linens off body area (will
diminish tactile stimuli)
7. Frequent linen changes may be necessary due to
hyperhidrosis (increased sweating).
8. Allow family members to bring in clean sheet and pillowcases
for patient. Hospital sheets are not soft and
can irritate the skin.
9. Place a sign above bed designating affected limb
Procedures
1. Perform a phlebotomy on unaffected limb only
2. Use Pediatric needles (any trauma can cause the
spread of RSD to a new site)
3. Warm Alcohol or Betadine wipes with warm running
water on outside of package before opening package
(these wipes can be very cold to the patient)
4. If PICA site is available, see if blood can be obtained
from PIC instead of using vena puncture technique.
Blood Pressure and Pulse Rate
1. Use cuff on unaffected limb only
2. Use thigh cuff if both upper extremities are affected
Transport
1. Ask what kind of help the patient needs when transferring
to a stretcher or wheelchair (simply touching
arms or legs may cause hyperalgesia)
2. Use extreme care over bumps, such as elevator doorways
Feeding
1. Be careful not to touch patient extremities with bedside
table
Patient Identification
1. Place red bracelet on unaffected limb
2. Place red dot sticker on patient chart
The Joint Commission on Accreditation
of Healthcare Organizations has mandated
the healthcare institutions that
they accredit to assess and treat your
pain. Pain is now to be assessed as the
fifth vital sign. Patients have the right
to demand pain control and to be pain
free.
Hospital Protocol
RSD/CRPS Patient:
Handle With Care!
PO Box 502
Milford, CT 06460
Toll-free: 877-662-7737
info@rsds.org
www.rsds.org

You also need to get a them a copy of this. http://www.ncbi.nlm.nih.gov/pubmed/11131476 It's the first of a number of papers which state the use of pre-emptive analgesics will prevent spread during surgery

Thanks Jenna

Good thoughts! I have been dealing with this for 25 years, and I work hard daily to do things you mentioned and agree with you. For sure. I keep moving, stay employed, keep a life, keep active, so I know what you are saying. I am living that life, but I guess my point was different. It really is about the wide range of responses from docs/surgeons/anesthesiologists across the county. Some people have better luck with getting support and "protocols" when it comes to surgery or even after being diagnosed. For instance, some docs give Ketamine (oral, nasal) some will try this, do that, others are boldly and wildly against the same ..this and that. I live in an area with lots of top docs, hospitals everywhere, metropolitan area, and so many doctors here seem like they are living in the dinosaur era treating RSD and really conservative.

It is hard to know that you fight the hard fight daily, but when you need help with surgery, and know surgery is the way you get RSD (for me) that even after 25 yrs of this disease, it has been near impossible to get help. Maybe I am unique in feeling this burden and, well, anger over the years. Fear yes. I think I have finally turned the tides and am so grateful docs seem to want to work with me this time, as a team. SO HAPPY. THIS time will be different and I feel very empowered and positive with the progress I have made advocating for things I need/want which are standard procedures for people with RSD who have to have surgery. That's all. It's a gamble, you never know if it will happen regardless of intervention but from all of my years experience with this disease, I consistently see that people who have XYZ protocols pre, during, post op, fare way better than those that don't.

Thanks again, and appreciate your time and thoughts.
I feel this surgery I will be better prepared as will my team of KICK ***** rock stars (anesthesia, surgeon, pain management) I have faith NOW! And yes I do need to pound the Vit C :-)

Thanks Kevscar

Appreciate it. Really, thanks so much.
I am pretty comfy with the hospital care part, this is great reminder. I was really worked up about the pre, during, post anesthesia and medication, blocks, etc stuff. Meaning, I wanted to know if people here on the forum had written notes from their Pain M or other docs stating .." patient has RSD, patient requires intravenous regional anesthesia, nerve blocks and yada yada, pre op and post op IV lasting 3 days" so and so prior to surgery. I am working on getting that done for my surgery this time, and feel so so hopeful it may happen. It's like post traumatic to go into a major surgery without any of that, it seems almost barbaric. I just am hoping for them to protect me, my body, nerves, etc as much as they can by way of medicine, etc to reduce the chance of this happening again so severely. Everything you posted is very helpful and really good reminders. You are awesome, thanks. :-)

Thanks so much, you are a doll.

After I posted my original post I found some things like this that were helpful. This is really what I was talking about in my post, pre emptive analgesia for preventing spread. I just was emotional and long winded with my original post. I am human again now and have a few good appts behind me which helps. Met with hospital anesthesia dept to discuss all these things so I hope to be in better place for this surgery than the others.

Thank you 100,000 times. :-)