Guest guest Report post Posted August 20, 2008 Welcome , glad you've joined us! In a message dated 8/20/2008 6:39:02 P.M. Eastern Daylight Time, stellitano102@... writes: Hello,my name is I'm new to the group, Actually new to the whole thing. I have been suffering from RSD for 5 years due to either an injury or surgery.Been through a world of Doctors, meds.,therapy, you name it. Finally this past july I had an internal neurostimulator implanted in me. So far so good, I'm still healing from the surgery but I find that even though I'm stll healing I am able to do more than I've been able to do in 5 years. [Non-text portions of this message have been removed] **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2008 HI, ! I am so glad that you are sharing your story with us. I am so glad that you are reaching out for help and some TLC from this amazing group of folks!! I, too, have RSD. I have had RSD now for over 25 years. I have it through out my body. The worst place is in my left foot and ankle. I have had all the treatments....all the old and the new ones.....if I can help you with any information regarding them...don't hesitate to ask. While reading your post, I hear that you have been through the line of doctors, tests, meds and the whole list of things that we all go through....it sucks until you find the right thing....and now the stim is finally helping you...thank God!! I am glad that it is helping you out, hon!! One thing that I did though, that I must caution you about is not to think that you can do what you did prior to getting RSD. I thought that after I got my first stimulator that I was free and clear of any restrictions...I found out the hard way....Your life will improve drastically.....but you need to remember that you still have a chronic pain syndrome....not to bust your bubble, sweetie...just keeping you grounded. When I got my second stimulator, I was more prepared, as I had been through it already. Please know that I here for all the members. I am Mike's Co-owner. Mike is the owner of our fabulous group. He started our group....that has blossomed beautifully!! If I can be of any help, please know that I am here. We have a lot of folks with RSD ...and I know they are also more than happy to jump in and help you out. Gentle hugs to you and all, Kathy G. Co-owner **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2008 I have a little problem and I am hoping someone might have an answer. I can't use plastic tape at all because I get a rash and if worn for more than a few hours, it eats away my skin. They used paper tape for my trial and I had the same problem. If I hadn't gotten it off when I did, I would have had a very large open sore, I assume from the adhesive. As it stands, it was open and starting to seep <sp> when I took it off(Sorry for being so graphic.) What do I do? In a message dated 8/20/2008 10:56:37 P.M. Eastern Daylight Time, karloutram@... writes: helo shannon, my name is karl and im the only member in the uk who seems to be active within the group, welcome and hope you get support and help or at least a good chat karl xx > Hello,my name is I'm new to the group, Actually new to the whole thing. I have been suffering from RSD for 5 years due to either an injury or surgery.Been through a world of Doctors, meds.,therapy, you name it. Finally this past july I had an internal neurostimulator implanted in me. So far so good, I'm still healing from the surgery but I find that even though I'm stll healing I am able to do more than I've been able to do in 5 years. > > > > > > [Non-text portions of this message have been removed] > **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2008 SHANNON I ALSO HAVE RSD, ALONG WITH SEVERAL OTHER CONDITIONS. AS YOU KNOW. RSD IS A HORRIFIC DISEASE, BUT, I'M SO GLAD YOU'RE GETTING SO MUCH RELIEF FROM YOUR STIM. IT SOUNDS LIKE YOU'VE RUN THE GAMUT OF MOST RSD PATIENTS OF GOING TO NUMEROUS DRS, MEDS, THERAPY, BEFORE THE STIM. THE STIM. OPENS UP A NEW WORLD FOR THE CHRONIC PAIN PATIENT. ALTHOUGH YOU WILL BE ABLE TO DO MORE THAN YOU WERE ABLE TO DO BEFORE, YOU MUST REMEMBER THAT YOU MUST BE CAREFUL NOT TO OVERDO IT. IF YOU TRY TO DO TOO MUCH. YOU WILL END UP IN PAIN. THE STIM WILL NOW BE ABLE TO GIVE YOU A MUCH BETTER QUALITY OF LIVE. BUT YOU MUST REMEMBER TO LIVE WITHIN YOUR LIMITATIONS, IN ORDER TO KEEP THE PAIN UNDER CONTROL. YOU'RE IN THE RIGHT PLACE. THIS IS A GROUP OF LOVING, CARING COMPASSIONATE PEOPLE. WE SUPPORT EACH OTHER IN GOOD TIMES AS WELL AS IN BAD TIMES. IF YOU HAVE ANY QUESTIONS OR NEED ANY INFORMATION I AM HERE FOR YOU. SUE C MODERATOR From: shannon johnson <stellitano102@...> Subject: Hello Stimulator Cc: stellitano102@... Date: Wednesday, August 20, 2008, 10:29 PM Hello,my name is I'm new to the group, Actually new to the whole thing. I have been suffering from RSD for 5 years due to either an injury or surgery.Been through a world of Doctors, meds.,therapy, you name it. Finally this past july I had an internal neurostimulator implanted in me. So far so good, I'm still healing from the surgery but I find that even though I'm stll healing I am able to do more than I've been able to do in 5 years. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2008 tell them to use skin prep i'm the same way but if they use skin prep before the tape its not as bad it goes on under the tape **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2008 helo shannon, my name is karl and im the only member in the uk who seems to be active within the group, welcome and hope you get support and help or at least a good chat karl xx > Hello,my name is I'm new to the group, Actually new to the whole thing. I have been suffering from RSD for 5 years due to either an injury or surgery.Been through a world of Doctors, meds.,therapy, you name it. Finally this past july I had an internal neurostimulator implanted in me. So far so good, I'm still healing from the surgery but I find that even though I'm stll healing I am able to do more than I've been able to do in 5 years. > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2008 Welcome to the group. From: shannon johnson <stellitano102> Subject: Hello Stimulator@gro ups.com Cc: stellitano102 Date: Wednesday, August 20, 2008, 10:29 PM Hello,my name is I'm new to the group, Actually new to the whole thing. I have been suffering from RSD for 5 years due to either an injury or surgery.Been through a world of Doctors, meds.,therapy, you name it. Finally this past july I had an internal neurostimulator implanted in me. So far so good, I'm still healing from the surgery but I find that even though I'm stll healing I am able to do more than I've been able to do in 5 years. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2008 wow....thanks so much for that 411!!!!! I never knew there was such a thing..and just like Jenn, and I am sure so many of us also...my skin just bleeds from the tape. I will tell them this next time and think of you as I tell them. Thanks for the great tip! This is just an example of how our group helps each other!!! Gentle hugs to you and all, Kathy G. Co-owner **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 > Hi welcome to our group.. My name is .. I have had RSD for 6 yrs now,, I also had a scs implanted this past Feb,,, Is'nt it great !!!??? I love mine.. Took awhile for all the post op pain to go away,but now Im doing pretty good most of the time. Seems that my trial helped more then the prem one,, but I wouldnt give it up... you will find a great number of caring and knowagagle people,, its an awesome group... If I can help you with anything please ask.. we are all here to help each other.. soft hugs > > > Hello,my name is I'm new to the group, Actually new to the > whole thing. I have been suffering from RSD for 5 years due to either > an injury or surgery.Been through a world of Doctors, meds.,therapy, > you name it. Finally this past july I had an internal neurostimulator > implanted in me. So far so good, I'm still healing from the surgery > but I find that even though I'm stll healing I am able to do more > than I've been able to do in 5 years. > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > **************It's only a deal if it's where you want to go. Find your travel > deal here. > (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 What does that mean? In a message dated 8/21/2008 4:02:04 A.M. Eastern Daylight Time, crittersrose87@... writes: tell them to use skin prep i'm the same way but if they use skin prep before the tape its not as bad it goes on under the tape ************************<WBR>**It's only a deal if it's where you want to go. deal here. (_http://information.http://infohttp://infhttp://informatihttp://in_ (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) ) [Non-text portions of this message have been removed] **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 I took the tape off and let it dry out and it just pretty much itches now. I'll be okay but I worry about my perm. In a message dated 8/21/2008 9:25:41 A.M. Eastern Daylight Time, karloutram@... writes: > > helo shannon, my name is karl and im the only member in the uk who > seems to be active within the group, welcome and hope you get support > and help or at least a good chat > > karl xx > > > Hello,my name is I'm new to the group, Actually new to the > whole thing. I have been suffering from RSD for 5 years due to either > an injury or surgery.Been through a world of Doctors, meds.,therapy, > you name it. Finally this past july I had an internal neurostimulator > implanted in me. So far so good, I'm still healing from the surgery > but I find that even though I'm stll healing I am able to do more > than I've been able to do in 5 years. > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > ************ ************<WBR>**It's only a deal if it's where you wan your travel > deal here. > (_http://information.http://infohttp://infhttp://informatihttp://in_ (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) ) > > > [Non-text portions of this message have been removed] > **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 > > helo shannon, my name is karl and im the only member in the uk who > seems to be active within the group, welcome and hope you get support > and help or at least a good chat > > karl xx > > > Hello,my name is I'm new to the group, Actually new to the > whole thing. I have been suffering from RSD for 5 years due to either > an injury or surgery.Been through a world of Doctors, meds.,therapy, > you name it. Finally this past july I had an internal neurostimulator > implanted in me. So far so good, I'm still healing from the surgery > but I find that even though I'm stll healing I am able to do more > than I've been able to do in 5 years. > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > **************It's only a deal if it's where you want to go. Find your travel > deal here. > (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 no problem i was an emt for awhile but in the area i was working i couldn't stand to pick up 1 more abused elderly person i walked away from it almost 20 yrs ago but i still try to keep up on my medical knowledge **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 Kathy, Have your tried Ketamine therapy? A few of the people in my support group are getting very good results from Ketamine. None of the members have had the coma therapy but rather the IV treatment both in and out patient. Dorothy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 mike, how bizzare is that, and good of course, the cat-scan sounds like a good idea to be on the safe side, hope it stays pain free for you, karl xx > Just wanted to post say hello. My back pain went away really weried I > am still gone get a cat scan to make sure. Group you have been a very > great supportive caring loving people here. I enjoy every post. Mike > Group owner > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 what does what mean ? > What does that mean? > > > In a message dated 8/21/2008 4:02:04 A.M. Eastern Daylight Time, > crittersrose87@... writes: > > > > > tell them to use skin prep i'm the same way but if they use skin prep > before the tape its not as bad it goes on under the tape > > ************************<WBR>**It's only a deal if it's where you want to go. > > deal here. > (_http://information.http://infohttp://infhttp://informatihttp://in_ > (http://information.travel.aol.com/deals? ncid=aoltrv00050000000047) ) > > [Non-text portions of this message have been removed] > > > > > > > > **************It's only a deal if it's where you want to go. Find your travel > deal here. > (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 skin prep is a lil pad that's medicated they put it on before the tape it makes like a protective barrier between your skin and the tape to keep you from getting sores **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 That would be so very wonderful. It is not only incredibly uncomfortable but also quite unattractive to have a large seeping wound. Also, rash or sore or whatever, it doesn't mean that the tape doesn't still have to be there. I am going to have to write this down to make sure I tell the doctor. My trial tape was only on for a week, I can't even stand to imagine how awful it would be when I have my permanent put in. Now, my biggest problem will be trying to remember to tell the doctor. I didn't have a LOT of depression after my trial but my PM doc said that the permanent implant would require significantly more anesthesia. I am very concerned about this because I have a bad reaction to any sedating anesthesia. It causes me some significant depression, lasting anywhere between a week and a month, depending upon the amount and type used. In a message dated 8/21/2008 5:55:54 P.M. Eastern Daylight Time, crittersrose87@... writes: skin prep is a lil pad that's medicated they put it on before the tape it makes like a protective barrier between your skin and the tape to keep you from getting sores ************************<WBR>**It's only a deal if it's where you want to go. deal here. (_http://information.http://infohttp://infhttp://informatihttp://in_ (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) ) [Non-text portions of this message have been removed] **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 Hi, Dorothy. yes, I tried some Ketamine treatments and unfortunately, they didn't help me at all. I would of loved for them to...but it was just another bust. Thanks for the thought though...I do appreciate you thinking of me and how something could help. I hope you are doing well. Gentle hugs to you and all, Kathy G. Co-owner **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 or I suppose I could just run around naked LOL In a message dated 8/21/2008 10:34:54 P.M. Eastern Daylight Time, dotratz@... writes: There is a spray adhesive that the surgeon can use so that you do not require any tape. My doctor used it on me when I had my last pump implant. This has been around for years because I also had it used on me over 30 years ago when I had my hysterectomy. If you are afraid of your clothes or whatever irritating your incision site without a dressing, place a light day pad over the incision and under your underwear. Dorothy [Non-text portions of this message have been removed] **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 HI, Dorothy! I am glad that this worked for you so well!!! I had this used on me about 15 years ago and had a severe reaction to it...but then again...you can't go by me...when i was a kid I was allergic to every single formula, so my mom and dad had to give me goat's milk. When i was around 4, I became allergic to my own bacteria!! It was awful. I was also allergic to grass, corn, chocolate, chichen, and every single soap eith exception to the disgusting one called Dial. Now, I am better...but still allergic to cut grass...and a ton of med....forget tape and any adhesive....some of them even flare my asthma! When I worked in the field prior to my RSD getting so bad i had to resign, I would hate patients like me...LOL Hope you are well! Gentle hugs to you and all, Kathy G. Co-owner **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 hey jenn I am not trying to burst Dorothy's idea at all...believe me....I hope this works as well for you as it does for her....but if you are as sensitive as I am to a ton of things....you might want to have your dr try a small amount first...I had this about 15 years ago and had a bad reaction to it. Like I said..I am not trying to burst Dorothy's idea...just letting you know to be careful kathy g. Co-owner **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 the last thing I need is something to irritate my skin more. I can't even be in direct sunlight, including in the car without getting sun blisters. In a message dated 8/21/2008 10:49:27 P.M. Eastern Daylight Time, KGAVI@... writes: hey jenn I am not trying to burst Dorothy's idea at all...believe me....I hope this works as well for you as it does for her....but if you are as sensitive as I am to a ton of things....you might want to have your dr try a small amount first...I had this about 15 years ago and had a bad reaction to it. Like I said..I am not trying to burst Dorothy's idea...just letting you know to be careful kathy g. Co-owner ************************<WBR>**It's only a deal if it's where you want to go. deal here. (_http://information.http://infohttp://infhttp://informatihttp://in_ (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) ) [Non-text portions of this message have been removed] **************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 There is a spray adhesive that the surgeon can use so that you do not require any tape. My doctor used it on me when I had my last pump implant. This has been around for years because I also had it used on me over 30 years ago when I had my hysterectomy. If you are afraid of your clothes or whatever irritating your incision site without a dressing, place a light day pad over the incision and under your underwear. Dorothy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2008 Kathy, I am thinking that what they have now is something new, or at least that is what my doctor told me. I mentioned to him that I had it years ago and he said that this wasn't around back then. I do not have problems with many things just vitamins and adhesive tape. I have ended up with 2nd degree burns and with vitamins it looks like I have the measles along with a bad case of chicken pox and that is how bad it itches too. Dorothy Quote Share this post Link to post Share on other sites
