STEAL SYNDROME

[Frankie24]

Two weeks out from having my A/V fistula surgery for dialysis in my left wrist and I have been experiencing terrible pain and numbness and tingling in my hand. I was told I have what they believe is steal syndrome, where the fistula is pulling to much blood away from my hand and causing symptoms. Now I go for testing and they said that the fix would be yet another surgery ! I am still not over my anger about having to finally agree to the fistula being done in the first place. I know in the big scheme of things this may sound minor, however I just feel like, does this ever end ?!? Sorry I needed to vent. I spend my time lately between work and Doctor appointment's and procedure's. I worry about my job. I am so stressed out by it all. Has anyone had steal syndrome and had the surgery to correct ? Thanks for letting me vent.....Appreciate and thoughts or comments.

[jdapja]

Sorry to hear things are not going too well for you since getting the fistula. I had my fistula placed in my right wrist almost 6 weeks ago and just had seen the surgeon yesterday for him to look at it and see how it's coming along. I expressed to him that I still felt the numbness around the wrist and down into the thumb and was wondering when this would wear off. He said this operation to place the fistula has such minute nerve endings that sometime getting the numbness to subside 100% isn't possible. My wife said something to me at that time that made me feel better: "Paul, you are able to move your hand and fingers so even if you don't have 100% feeling in that area it is no big deal. Just think about those who have no feeling or are unable to get the fistula placed in the wrist which is the best area for it."

I am sure the doctors know what the problem is and how to correct it. I know at times you just want to give up and say the hell with it all but we must go on. I had one kidney removed in 95 do to cancer. I can thank God that the other one has lasted 23 years before it to has failed. My last GFR was 17 and I plan to stay off dialysis as long as I can. I also had a heartattack, numerous ER visits for not being able to breath, etc. etc. etc. I am in a sense, all burned out but we must go on for ourselves and our family. I'm only trying to show you that no matter what you have to suffer, life is still worthwhile and we have to keep fighting. It is hard now but it will get easier as time goes on. Get the problem taken care of now and get on with your life. Keep your chin up and remember this is a place you let your frustrations out and then get back on track. Take care and let us know how things go.

[Frankie24 in reply to jdapja]

I appreciate your response. I think what has me most upset is that my family says to me, " Just suck it up" meanwhile they are calling to try and schedule an appointment because the fistula needs to be fixed to work correctly when it comes time for dialysis. I guess I am most angry at my family and there lack of support, telling me to suck it up rather than take care of it.

[jdapja in reply to Frankie24]

Disregard your family”s thoughts. You have to take care of “You.” It is right that they schedule an appointment for you on how t fix the fistula. If I was you I wouldn’t go back to the doctor that did the fistula operation. I would find another doctor. The closer to dialysis you are the more you need to get the fistula fixed asap in case you need dialysis quickly. Your nephrologist should give you a good recommendation on a good surgeon for fixing the fistula and hopefully he doesn’t recommend the one that didn’t do such a good job in the first place. Once this is corrected you will be on your way. Let your family know that what they are doing is not helping you and maybe get a priest or counselor to help you to get them to understand how this is effecting you. In the meantime keep plugging and don’t give up. There is still a lot of living left for you (and me) since I am in the same boat as you. Keep in touch.