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

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

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

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