Surgery - wait/proceed?
 

Okay , need some input please ! Along with RSD I have a cardiac issue that is going to require surgery at some point . I have a valve that will most likely need replacing and the aorta will need replacing where it comes out of the heart . Here is where it gets complicated........if the valve needs replacing (will not know until in surgery) the two types are artificial or mechanical , the pros/cons with the valve is the mechanical requires lifetime blood thinners , artificial has replacement at aprox. 10 yrs . Pros/cons with the aorta is a little tougher as their is little wiggle room with it , if it bursts (I) you are done . The measurements for surgery are all right on the border and the argument could be made either way for waiting or proceeding . The things that have me scared the possibility of spread of the RSD with open heart surgery and of course the thought of the aorta bursting . And they say to keep your anxiety level down ! Yeah , right ! I have my first grandchild , who will be two in October and I want to watch her grow up....I realize only I can make this decision with the information forwarded to me and talking with my family and prayer . I do not think it would be as tough as a decision without the RSD . Any fellow RSD friends who have faced a similar situation ? Hope all are well , take care !

Hi RU, Wow, you really have a lot to contend with right now. Heart issues sure can be scary, and you really have to get educated. My dad went through the whole valve replacement thing last year, and while he had some other unrelated complications that had really weakened him before the surgery but he made a remarkable recovery and is back playing golf four times a week. He told me that he had very little pain with the surgery, and other than the scars, would not even know that he had the surgery. That said, he does not have RSD. Unfortunetly with genetics, I seemed to have inherited the same problem and see a cardiologist tomorrow. I too am very leery of any invasive procedures. I do understand about wanting to see your granddaughter grow up, my grandson is 2 and is really a joy in my life. Good luck with your decisions and please keep us posted on how you are. Lisa

Thanks Lisa
 

Lisa , you are correct about educating yourself in these matters , I have been talking with any and all specialist I can in this matter . But most of them are unaware of RSD , imagine that , right ? I would feel pretty comfortable with the surgery now if it wasn't for the RSD because I would like to do it while I was younger but at the same time if I have to go with the artificial valve I certainly do not want to have this surgery a couple of times...I am 49 now . Which valve did your father go with if you do not mind me asking ? Take care !

I am sorry you are facing this. Do you have a pain doctor? Could you discuss his thoughts about this? Does this heart doctor know about RSD? Have you been for another opinion? Did the doctor say what he felt was better and if sooner is better then later? Sorry I am asking so many ?'s rather then giving you answers. These are just thoughts that came to my mind. I hope things look up soon

Daniella
 

The cardio doc and my pain mgmt doc know each other and practice at the same facility , however the cardio knows nothing of RSD . I will certainly have more consults before I have any type of procedure . Talking to the two docs is like talking to one I quess , as they both suggest to see what the other one thinks ..... The procedure itself is only done at a few of the major hospitals in our region , so I will talk with specialist for this procedure at least before we do any surgery . The biggest stumbling block with all involved (myself , family , docs. ,etc.) seems to be the RSD and how it plays into this picture . Definately worried about spread as mine has gone from LUE to entire left side - head to toes already . Then if you exclude the RSD you still have the different theories on when to operate , risk vs reward is an extreme for both waiting and proceding . Sorry to ramble ! Take care and thanks for response...

RU READY... Oh boy typing that never made me think more than I do now...Ru ready?? Oh gosh..as I read your posts first know that what ever time and rotue you decide on I will keep you in my prayers...I too have a leaky mitral value plus a history of A-Fib... I can brag..I had the paddles one time... if I were in your shoes, not sure what or when I would do intervention mostly due to our RSD in the mix...it is such a crap shoot and RSD can take ownership of our heart also even with out surgery..My best thought is please...get as many Dr.'s involved as possible on your case and day of surgery..I am thinking much knowledge not only with your heart but also RSD Dr.'s to shed the what if spin on things..Can't get too much knowledge..I believe if it is a must, life altering problem then it is a wing and a prayer whether RSD will present itself there...I am sorry you are in such a glitch...

I will pray for you no matter what!!

Love, Kathy:hug:

Hello RUReady -

I did a fair amount of investigation regarding a far less drastic procedure of the torso - hernia repair - before the issue stopped bothering me and I was able to place it on the back burner. I learned two things though: even outside of the extremities, precautions such as the use of nerve blocks must be taken. For something as serious as cracking one's chest open, it would appear that continuous regional anesthesia would be the way to go.

For what is perhaps the best piece out there, check out the following Open Access article, "distributed under the terms of the Creative Commons Attribution License http://creativecommons.org/licenses/by/2.0 which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited":

Evidence based guidelines for complex regional pain syndrome type 1, Roberto S Perez, Paul E Zollinger, Pieter U Dijkstra et al, BMC Neurology 2010, 10:20, http://www.biomedcentral.com/1471-2377/10/20

Secondary prevention

Various interventions or combinations of interventions aimed at preventing relapse of CRPS-I have been described, but little adequate research has been carried out. Relapse rates up to 13% (of 47 patients) have been reported despite combined interventions aimed at preventing relapse of CRPS-I (waiting until the symptoms of CRPS-I had abated, minimizing the use of tourniquet, administering vasodilators to encourage circulation, sympathetic blockades and mannitol) [98]. Six percent of patients with a history of CPRS-I (n = 18) treated with calcitonin (100 IU a day s.c. for four weeks) had a relapse of CRPS-I, against 28% of the patients in a historic control group (n = 74) [99]. A retrospective study (n = 50) found that peri-operative stellate ganglion blockade carried out to prevent a relapse of CRPS-I to be unsuccessful in 10% of cases. The relapse rate in an untreated control group was 72% [100].

A retrospective study (n = 1200) found that 1% of the patients undergoing anterior cruciate ligament surgery receiving pre-emptive analgesia (comprising administration of paracetamol and NSAIDs before surgery) combined with multimodal analgesia experienced a relapse of CPRS-I. The CRPS-I relapse rate for a control group, taking painkillers only as required after surgery, was 4% [101].

In a randomized double-blind study in 84 patients with a history of CRPS-I in the hand or arm scheduled for hand or arm surgery, intravenous regional blockade with lidocaine and clonidine (1 μg/kg) showed a relapse rate for clonidine of 10% against 74% in the group receiving only lidocaine [100]. Case studies point to a possible beneficial effect of regional anaesthesia, such as brachial plexus block and epidural anaesthesia [101].

Despite lack of evidence, the task force is of the opinion that operations are preferably postponed until CRPS-I signs are minimal. Preferably, regional anaesthetic techniques such as brachial plexus blockade and epidural anaesthesia should be used (level 4)

There are indications that stellate blocks and intravenous regional anaesthesia using clonidine (not guanethidine) offer protection (level 3: Reuben et al. (A2)).

There are indications that the use of multimodal analgesia offers protection (level 3: Reuben (A2).

There are indications that daily administration of 100 IU of salmon calcitonin s.c. (peri-operatively for four weeks) can prevent a relapse of CRPS-I (level 3: Kissling et al. (B)).

Notes
98. Veldman PH, Goris RJ: Surgery on extremities with reflex sympathetic dystrophy. Unfallchirurg 1995, 98:45-48.
99. Kissling RO, Bloesch AC, Sager M, Dambacher MA, Schreiber A: Prevention of recurrence of Sudeck's disease with calcitonin. Rev Chir Orthop Reparatrice Appar Mot 1991, 77:562-567.
100. Reuben SS, Rosenthal EA, Steinberg RB, Faruqi S, Kilaru PA: Surgery on the affected upper extremity of patients with a history of complex regional pain syndrome: the use of intravenous regional anesthesia with clonidine. J Clin Anesth 2004, 16:517-522.
101. Reuben SS: Preventing the development of complex regional pain syndrome after surgery. Anesthesiology 2004, 101:1215-1224.

Complicating the literature, however, is that fact that the professional articles of Scott S. Reuben, MD have been largely retracted due to a persistant patter of admitted fraud on his part. See, Fraud Case Rocks Anesthesiology Community, Anesthesiology News, MARCH 2009 VOLUME: 35:3 http://www.anesthesiologynews.com/in...12634&ses=ogst However, his fraud seems to have centered around the "peri-operative" effectiveness of certain medications, where Dr. Reuben may of had undisclosed financial dealings with the manufacturers. As such, there may well be is less reason to doubt the effectiveness of interventions such as continuous regional anesthesia, where its effectiveness has been well documented elsewhere. See, e.g., Pain following battlefield injury and evacuation: a survey of 110 casualties from the wars in Iraq and Afghanistan, Buckenmaier CC 3rd, Rupprecht C, McKnight G, et al, Pain Med. 2009 Nov;10(8):1487-96. Epub 2009 Oct 14.

Abstract
OBJECTIVE: Advances in regional anesthesia, specifically continuous peripheral nerve blocks (CPNBs), have greatly improved pain outcomes for wounded soldiers in Iraq and Afghanistan. pain management practice variations, however, do exist, depending on the availability of pain-trained military professionals deployed to combat support hospitals. an exploratory study was undertaken to examine pain and other outcomes during evacuation and at landstuhl regional medical center (lrmc), germany. DESIGN: a mixed-methods, semistructured interview survey design was conducted on a convenience sample of wounded u.s. soldiers evacuated from iraq and afghanistan to lrmc. setting and patients. a total of 110 wounded soldiers evacuated from IRAQ and Afghanistan from July 2007 to February 2008 completed a pain survey at LRMC. Data were collected on demographics, injury mechanism, last 24-hour average, least, and worst, and pain now by using a 0-10 scale, and percent pain relief (from 0% [No relief] to 100% [Complete relief]). Similar items and measures of anxiety, distress, and worry during flight transport were measured (from 0 [None] to 10 [Extreme]). Responses were analyzed by using descriptive and correlational statistics, multiple linear regression, Mann-Whitney U-tests, and t-tests. The Walter Reed Army Medical Center, Human Use Committee approved this investigation. RESULTS: Participants were typically male (99.1%), Caucasian (80%), and injured from improvised explosive devices (60%) and gunshots (21.8%). Average and worst pain scores were inversely correlated with pain relief during transport (r = -0.58 and r = -0.46, respectively; P < 0.001), and low to moderately positively correlated with increased anxiety, distress, and worry during transport (P < 0.05). Average percent pain relief achieved was 45.2% +/- 26.6% during transport and 64.5% +/- 23.5% while at LRMC (P < 0.001). Participants with CPNB catheters placed at LRMC reported significantly less pain right now (P = 0.031) and better pain relief (P = 0.029) than soldiers without CPNBs. CONCLUSIONS: Our findings underscore the value of early aggressive pain management after major combat injuries. Increased pain was associated with increased anxiety, distress, and worry during transport, suggesting the need for psychological management along with analgesia. Regional anesthesia techniques while at LRMC contributed to better pain outcomes.

PMID: 19843233 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20399593

That said, I have been repeatedly advised that none of this will make a difference unless you can have this done in a (typically university) hospital where you can get a pre-operative consultation with the anesthesiologist. Without that, it is almost impossible to assure that special precautions will be taken, by someone who knows how to employ them.

Hope this is useful.

Mike

Thanks Mike
 

Thank you for the information , yes it will be helpful . Fortunately the two facilities in our region that perform this procedure are Shands Gainesville (Univ. of Florida teaching hospital ) and the Mayo Clinic Jacksonville . These two facilities came recommended from the Cleveland Clinic branch in Miami . I certainly plan on doing as much investigating and speaking with all involved before proceeding . Thank you again and take care !

Hi RU! Dad had the artifical valve replacement. Like you, we did not know if it would be a repair or replacement until the surgeon was actually in there and saw the problem. I faintly recall (BRAIN FOG) reading not to long ago that a new procedure has become available that some heart surgery can now be done without cracking the chest. I can remember discussing this with my dad, and he had also seen the article. This might be something to look into to as it might possibly reduce the chance of RSD spreading due to a bone injury. I saw the cardiologist this week for the first time and had to explain to him and his nurse what RSD is. Thankfully I had the information card from the RSD Association so they did not think that I was making it up. As always, best of luck and an early happy birthday. I am also having the same significant birthday this year. Lisa