Hi all,

I have a friend who has a multitude of autoimmune diseases, diabetes (insulin dep), etc. She also has RSD in both arms and probably one leg, which began last December (hospitalized and blood pressure cuff left on for days). She saw the pain specialist twice, takes Lyrica on and off and has only had a few weeks of home OT for one arm. At this point, she's decided to "live with current symptoms" and is not pursuing further care.

As a result of the autoimmune diseases, she has frequent aspiration pneumonia. One of her doctors now suggests placement of a feeding tube so she won't have to swallow food/liquids. The fact that I think other testing should be done before placement of the tube is one thing, but I'm also concerned about cutting on a person with RSD, and having a permanent "open wound" and how that will affect the RSD. My friend maintains the surgery can be done under local anesthetic but I've read that nerve blocks may need to be done to prevent a flare/spread.

Any opinions?

Thanks!

4-eyes

There is a school of thought that believes that any type of trauma (surgery) can result in spreading of RSD or (at the very least) a flare-up. That being said, we must always weigh the potential benefits against the potential problems.

It was suggested that I have minor foot surgery recently. The doctor's explanations did not make sense to me, so I went for a second opinion. After careful consideration, I decided that the benefit is not worth the risk at this point. If I get to the point when the foot pain is so severe I simply cannot stand it (no pun intended) I will probably change my mind and have the procedure done.

Mike

I am a speech pathologist and work with people with swallowing disorders. I hope your friend had an Modified Barium Swallow study to see if there are any consistencies she can tolerate- like puree or thickened liquids??

Debbie

Hi there, four eyes ::

From what I understand, having been in line to have a hernia repaired before other potential complications developed, surgery on the extremities is much riskier than the torso. That said, my pain mgt. doc recommended that I nevertheless have the hernia repair done with a continuous nerve block or possible an epidural in the event that the surgeon was absolutely certain that the procedure would be over before the two-hour window of the epidural expired.

The hard part is that without a two hour guarantee, the patient needs to arrange a pre-op conference with the anesthesiologist. These are important for two reason, first to make sure that the anesthesiologist is on board with the continuous block and, secondly, to insure that the anesthesiologist - who is otherwise assigned to the case the day before - doesn't walk into the O.R., look at the list of the various pain meds the patient is on, declare that s/he can’t predict what the interactions with the anesthesia will be and storm out of the room, thereby cancelling the surgery for the day. (My internist is personally aware of situations where this has happened.)

And at least in Los Angeles, I'm advised community/private hospitals simply don't have any arrangement for such consultations: anesthesiologists are assigned to cases the day before the procedure, end of story. Even what is often regarded as the top (and certainly largest) private hospital, Cedars Sinai Medical Center doesn't do anesthetic pre-op conferences, which is available at only two hospitals in all of LA: USC and UCLA.

Bottom line: if anesthesia practice in Los Angeles is anything like that in your area, surgery on RSD/CRPS patients may be best left to university/medical school hospitals. And besides, they are far more liberal when it comes to having insurance cover the total cost of the hospitalization, especially for the time of the physicians and surgeons, than are most non-profit hospitals, where the physician makes a profit even if the hospital does not.

I hope this is helpful.

Mike

I had a c/section 6 years into my rsd and my pain specialist took some preventative measures to make sure the pain wasn't too much and the RSD was kept under control. I had a spinal for the c/section that was also left in (and running) for a few days and I had a morphine IV as well.

When I had my hysterectomy last year, I had general anesthetic and they started a ketamine infusion just before the operation that stayed running for 5 days after the op. I still had a lot of pain with both of them and took endone tablets in the days following each op for extra breakthru pain, but was otherwise ok and had no complications. (I did have complications from the c/section, in the form of major nasty infections in my uterus that needed extra iv antibiotics for weeks afterwards, but that was a normal risk that comes with a c/section and had nothing to do with my RSD)

I think we do always need to weigh up the pros and cons of each procedure. I don't have blood tests unless I really have to, but I will have 3 in one week when I have a ketamine infusion. My (good) left arm doesn't like needles anymore and it's too risky for anyone to try, so IVs are done through my stomach and blood tests are taken from my good foot.

Your friends' doctor could give a nerve block to go with the general or run another type of anesthetic after the procedure. If you can get that dr to chat to her pain specialist, then they can work together to make it as successful and problem free as possible.

I hope it all goes really well for her, it sounds like she can do with some good luck!

Hi,

Thank you all for your suggestions. I really appreciate them!

Debbie, yes, my friend has had several barium swallows and there is evidence of aspiration. Bedside suggestions were made and my friend sent home with no further follow up. I suspect the friend's reflux plays a big part in her problems as well. I'm an OT myself, and try to help...but hard to do so through the computer. LOL

I will definitely let my friend read the suggestions about the continuous nerve blocks, etc. My friend is under the impression that she'll just need a local anesthetic and I've been cringing at that thought, esp since my friend has quite a bit of belly fat and I suspect some "digging around" will be necessary. I'd already made her promise me that she'd contact her pain specialist and tell her of the plans so she could offer suggestions.

My friend is in San Antonio, btw. If anyone knows of a super doc there, please let me know. Travel to see a really great doc is next to impossible due to my friend's severe disability, so she needs to stay local.

Thanks again for all of your help!

4-eyes

Glad to help. In response to your request, I looked up those doctors in San Antonio who have been certified by the American Board of Pain Medicine. This is a group which has, as part of it's mission, the development of "standards and requirements for graduate medical education in Pain Medicine in collaboration with other concerned organizations and agencies," e.g., that they supervise standards in residency and fellowship programs across the country and they in turn certify only pain management psysicians who meet their educational - resisidency and/or fellowship - standards, and pass an 8 hour written exam. So it's the real deal. (To use its search engine to find someone in any geographic area, go here: http://www.association-office.com/ab...dir/search.cfm.)

In any event, I had seventeen hits, two of them were anesthiologists affilliated with the Pain Clinic of the UT Health Sciences Center in San Antonio (and full professors at that). Their contact information is is follows:

Somayaji Ramamurthy, MD
University of Texas Health Science Ctr
Anesthesia - Pain Clinic
7703 Floyd Curl Dr
San Antonio, TX 78229-3900
Office Fax: (210)567-4471
Office Phone: (210)567-4543
Office E-Mail: Ramamurthy@utscsa.edu
Specialty of Origin: Anesthesiology

James N. Rogers, MD
UTMSCSA
Anesthesiology Dept - Pain Clinic
7703 Floyd Curl Dr
San Antonio, TX 78284
Office Fax: (210)567-4471
Office Phone: (210)567-4543
Office E-Mail: JNR@aries.utscasa.edu
Specialty of Origin: Anesthesiology

In keeping with my last post, about the value of doing these surgeries through a university hospital, they might then be able to direct your friend to an appropriate surgeon, on the one hand, and an O.R. anesthesiologist on their faculty familiar with continuous regional anesthesiology, on the other hand, who could then perform the procedure in a coordinated fashion. Much as my pain doc at the USC Pain Clinic was able to refer me to a general surgeon at USC, when another surgeon in the general community told me that (at least in LA) there was no was to set this up outside of a univerisity hospital. Accordingly, one way to start would be through the UT San Antonio Pain Clinic and go from there.

I hope this can work out for your friend.

Mike

I understand she needs a gasterostemy.. my son daniel had to have that done because he could not eat without asperating his food or liquid into his lungs as well.. But it was very invasive 23 years ago.

It will leave an opening to her stomach, a tube is inserted and the hole heals around it.. I used to have to change the tube often and everytime restretch the hole as part of the process and the stretching was quite painful, hopefuly they have found away around that too.

But it was not an open wound it was a healed wound like scar tissue.. inside it looked like the inside of your lip but way tougher.. hmm problem is the spread possibility before it heals, I would think a continuous block of some kind.. I'll see what I can find.

I hope she has a good RSD knowlegeable doctor.

Sandra

I went thru that pain for over two years , had my gull bladder out gull stones out. Nothing helped seen 16 Drs , finally I had a dr say there is something wrong with. Me but digit know what I had but knew I had inflammation in my body causing this pain. He put me on prednisone and that really helped my abdominal pain. The stuff IFAD alot of side effects with gloating a d liver enzymes . But it's worth it, I finally was diagnosed with rsd from dr swArtzmann in Philly , 10 day kettimine ibis gave me 70% of my life back. Only last for a few months and u need it again but it worked great for me. I also lost 25 pounds in 10 days while doing this. I hope this helps. I was bed ridden for over two years with that abdominal pain til I had prednisone good luck

First i want to say how blessed your friend is to have a friend like you that loves her so much that you are reaching out for help!

my problem is that i have RSD in my abdomen which was caused by me having gall bladder surgery. it happened in January 2005. i went in healthy except for gall bladder problems. the day after sugery i started complaing about terrible pain...but it wasnt wjere i was cut...it was in my lower right area of my abdomen. then over the next few days the paon increased and i complained about swelling. all the doctors thought i had an infection and loaded me up with antibiotics, the pain increased , the swelling increased up to 20lbs after 3 days! they were scared. then after 8 weeks and several trips to the ER and the surgeon, i went to the ER because the swelling was pushing up on my lungs and i couldnt breath. they gave me prednisone and the swelling started to come off in buckets! so ithought i was going to be fine. after i tapered off the prednisone, the swelling returned...so i went back on oiit and am still on it today. then a plastic surgeon said lets give her a big tummy tuck and they cut me hip to hip remobing 25lbs of swollen tissue....i died after the surgery, they brought me back i spent 14 days in the hospital with blood transfusons and other problems. i have been mostly bed ridden since and my body is falling a part and now i have 85lbs of fluid on the right side of my abdomen. my hubby has been my full time care taker since this started, its not easy. nothing about rsd is easy.
so if your friend can avoid abdominal surgery.....please do
peace and blessings
Lori