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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: RsdTrinity...
Sep 17, 2004
I just about started crying when iread your post... your story is soo similar down to when you had your stim implanted its all freeky. :eek:

I had surgery for my neuromas 2 years ago this sunday and I developed them from walking tipy toed from a previous surgery on my heal and it devleoped from there with in 3 mos. So bc i am on my feet for my carrer most of the day, and it was killing me walking on my foot so like you i opted to have it taken out and he said it was just a short recovery and i would be back to work with in a week or 2. Well I had the surgery and about a week or 2 after the surgery, i like you was getting out of the shower and i looked down and my whole foot and ankle was purple in color. I freeked out soo bad, I called my doc's office nad he wanted to see my rigth away. But when i got there he said that the purple was due to the tight bandage on my foot, and i was like yellin at him that i had it off when i was in the shower and when i got out , thats when i noticed it blue and purple.. still he didnt beleive me and said it was due to me wrapping it tight in a bandage, mind you in the profession i am in i konw if its tight or not and how tight to put it and i could put 3 full fingers under the bandage so it wasnt , so that made me mad. But i had no where to go. I let it go fo r another week till i had my stiches out and it was still changing colors and starting to really hurt in a way tht didnt add up to my surgery pain. And my doc still didnt mention or think of RSD. He blammed it on posibly another neuroma growing where he cut the other one off or even a pinched nerve. So he jsut sent me to PT a month after my surgery. The PT lady wouldnt touch my foot at all.. it was that bad. Purple and blue and blotchy and it was starting to invert. And i was unable to wwalk on it so i was dependent on my crutches and it was PT that even suggested that i ahve RSD and not this pinched nerve and said if it was RSD that i was at the crucial time to get it into remission. they had to convince my doc that it was even this and to even try blocks to see if that would help. And by that time it was December and i had my first block and it only helped for 2 hours... but i had a series of i tihnk 8 or 9 of them and still nothing, and my doc wasnt doing anything to help me either. Mind you that i was also out of work all this time and running out of short term disabilty too... So I took it in my own hands and went and saw a pain mangaement doc in Feb of 2003 and on my first appt he said i was not good. that i f i came to him a month later then i did , i deffinetly would not have a foot to save. And 3 days affter that appt, he admited me to the hospital for a week with an epidural for a week and that was heaven!! but after it was taken out all my pain cam right back, so I had the stim implanted in May of 2003 and it was all good unitl it stoped working 6 weeks later, and i had to have a revision done and more leads put in , in June of 2003. And that one stopped working for my foot in Aug of 2003. so i was agin admited to have the epidural done to see if that would help the nerves accept the stim, but i had a temp. radio freq block done to see if a sympathectomy would be in my best intrests and that didnt work. So my doc was running out of options and he called one of his collueges in TX and he suggested have a periphearl stimulator put in. So i had a PNS (peripheral nerve stimulator) implanted in my leg and its connected to my sciatic nerve (instead of my spinal cord, i have a SCS also) and had that done in June of this year and that has not worked to its best becuase they need the stim that in my spinal cord to work with it. So once i heal from that surgery i am gonna need a surgery on my SCS to that it will work with my PNS in my leg. So that means opening up my back again.. ughhh. :yawn:

I am 26 years old, and like you again, have come to the acceptance that this is not gonna go away at all and i am always going to have severe pain, and also have accepted that i probably will never work again, or even have kids. My bf left me while i was in the hosp last Sept. and i havent seen him since , but hes also in the military and his mom told me that hes in Africa on a peace keeping mission, so i am glad that i dont have to see him around town for awhile.. not that i wish him any real bad, but i dont think i could handle him right now nad the way he did leave... ya know.. youre lucky to have your BF there with you and sooo supportive. I moved back in with my parents and they have been there for me through out this and dont know what i would do if i didnt have them!! but living with my parents at 26... ughh.. lol :rolleyes:

My RSD has also spread... it went to my back last November and in may of this year it has spread to my left foot only to 2 toes, but the pain is getting more into the foot now...

My meds dont work, and with the stims not really working its alll so hard to deal with and still have a smile on my face when everyone sees me. But i dont want to show or them to know how much pain i really am in. They see how disformed my foot is ( i am only able to walk o n the out side of my foot and the rest of it is up in the air and twisted, due to the RSD attacking the nerves and tendons and muscles inthe foot) but they really dont get how the pain really feels...??? I never went to the ER, bc i would get labled as a drug seeker and i wasnt and they dont know much about RSD, my doc i see is an hour away and the local hosp here are in the dark about it and when i do say i have it , they are like whats that, and are facinated that i have 2 stim's implanted in me.... soo.. and plus all pain meds dont touch my RSD pain????soo im stuck .

Hope to hear from ya!! sorry so long of a post.. lol and hope your doing good. here in NY its raining soo bad and its making the RSD flare something fierce.. TTYL :D

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