Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Actually, now that I am thinking about this, I remember having some type of adhesive sprayed onto my foot after my nerve biopsy. I know there was some thin piece of white material put on after that. I can't really describe it but I wonder if that is maybe the same thing as you are talking about. I think I will call the doctor who used that today or Monday and ask him what it's called so I can talk to the neurosurgeon about using it. Although, my nerve biopsy incision was about 1/4 inch long...if even that. It may be different on a larger scale. In a message dated 8/22/2008 6:57:52 A.M. Eastern Daylight Time, dotratz@... writes: 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 [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 Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Hey Jenn... If your wound is seeping, you may very well need an anti biotic....you don't want cellulitis on top of everything esle!!! maybe you should get in touch with the dr? hope it is better soon kathy **************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 Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Hey Kathy, I don't know how your e-mail service works. Mine automatically copies the prior posts to my reply. I understand this one, but sometimes I find myself confused with your responses and then I have to look through old posts to figure out what you were responding to. It makes me feel even crazier than I do now LOL. I looked through my settings and all it was for me was checking something in the settings. In a message dated 8/22/2008 5:42:18 P.M. Eastern Daylight Time, KGAVI@... writes: Hey Jenn... If your wound is seeping, you may very well need an anti biotic....you don't want cellulitis on top of everything esle!!! maybe you should get in touch with the dr? hope it is better soon kathy ************************<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 Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 My doctor didn't put anything over the area he had sprayed but that could be because it was on my lower abdomen rather than on my foot. All I know is that it was a great relief not having to worry about how the tape was going to effect me. Just one word of advise, tell the doctor that you want plenty of the spray but to please not get too liberal about where he is spraying it. My doctor got a little carried away and some of the spray hit the skin on my upper abdomen and then my breast got stuck to it. Fortunately it was right after surgery and I was able to unstick myself. Also, I know you addressed the comment to Kathy but thought I would tell you why my posts don't show the post I am responding to. My settings also automatically show the post that I am responding to but I then erase the previous post before sending mine. I do that because the people who receive the daily digest with all the posts at one time don't have to read the same initial post half a dozen times. Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 i try to send them right away to you, Jenn....but as I answer all the mail and I get over 100-190 per day...sometimes I need to off line and then come back on. I will try to send my responses to you right away...if not...you can send your mail to me directly as you have in the past. I do try to address the mail that I am answering and most of the time, the post that I am answering is above what I am writing already. 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 Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 -nobody draggin you through the mud. you are taking this out of context. re read it again. all Kathy said was she didnt understand is that bad. Please dont make a mountain out of a mole hill. mike group owner -- In Stimulator , UCJAM1977@... wrote: > > Kathy, Why are you so hateful? It is absurd the way you are dragging me > through the mud for a simple request. It hurts my feelings and I don't > understand it. > > Jenn > > > In a message dated 8/23/2008 9:31:18 P.M. Eastern Daylight Time, > KGAVI@... writes: > > > > > Hi, Dorothy! > > Yeah...I do the same thing...as I do believe most folks do...if you don't > understand the few worded posts....most likely it is to someone else and > like > you said, you let it go at that....and you don't really need to know what it > means....so I really didn't even understand Jenn's point in the first place. > > Anyway......Anyway......<WBR>I am so sorry about all your health issues.. > strong and vibrant woman. You are a role model, as even though you have many > health problems, you are involved in a lot, and for that I honestly applaud > you. > > I am sorry about your stroke and how it has left your hand, but applaud you > for typing and using the typing as therapy. > > I know all too well about the typing being painful, but benefiticial toward > therapy from the RSD in both hands. > > Have a nice night and it was really great to gab with you. > > Gentle hugs to you and all, > > Kathy G. > Group 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 Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 I dont see any post that showed any hatefulness toward you Jen. all Kathy said was she disnt understand. if thats hateful then i am going crazy. if I dont understand I wull say so. mike owner > > Kathy, Why are you so hateful? It is absurd the way you are dragging me > through the mud for a simple request. It hurts my feelings and I don't > understand it. > > Jenn > > > In a message dated 8/23/2008 9:31:18 P.M. Eastern Daylight Time, > KGAVI@... writes: > > > > > Hi, Dorothy! > > Yeah...I do the same thing...as I do believe most folks do...if you don't > understand the few worded posts....most likely it is to someone else and > like > you said, you let it go at that....and you don't really need to know what it > means....so I really didn't even understand Jenn's point in the first place. > > Anyway......Anyway......<WBR>I am so sorry about all your health issues.. > strong and vibrant woman. You are a role model, as even though you have many > health problems, you are involved in a lot, and for that I honestly applaud > you. > > I am sorry about your stroke and how it has left your hand, but applaud you > for typing and using the typing as therapy. > > I know all too well about the typing being painful, but benefiticial toward > therapy from the RSD in both hands. > > Have a nice night and it was really great to gab with you. > > Gentle hugs to you and all, > > Kathy G. > Group 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 Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi Mike...my MSN email addy is dclaar2@.... Thanks for working on putting a list together for all of us. > > Hello group I hope everyone having a painfree day. I just wanted to > ask everyone if you have msn messenger downloaded could you send me > your messenger email so i can get chat going again. mike group owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Mike My email for messenger is kimfleach@... Thanks Kim hello Hello group I hope everyone having a painfree day. I just wanted to ask everyone if you have msn messenger downloaded could you send me your messenger email so i can get chat going again. mike group owner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hi Jim, Welcome to the group alot of us understand what you are going through and have been were you are, we are all here to help and talk when ever you need too. Mike is the founder of the group, Sue is the Co-Own I am one of the Moderators My name is Kathy Sweet. You will meet allot of people on here, we are all friendly and ready to lend am ear know matter the problem. You hang in there we all know how you feel. I look foward to chatting with you. Keep On Smiling Kathy Sweet Moderator > > Hi everyone, > > My name is and I am having a few problems. > > I have an underlying problem with the circulation in my right leg. I have had 12 operations on my leg to date and as a result of all the surgery I have been left with chronic pain in my leg below the knee due to extensive nerve damage. I spent the best part of 3 months in hospital at the end of last year being pumped full of a cocktail of various drugs including morphine which did little for the pain. > > I had a stimulator fitted just before Christmas and it was the best present ever, no more pain and within 3 weeks I was off all medication and back at work. I felt that I had got my life back. Unfortunately the lead attached to my spine became detached and migrated downwards. I had further surgery to correct the situation in February when I had a different type of lead fitted which involved the removal of a part of the bone. This didn't work as a subsequent x- ray showed that the lead had become detached from the implant. > > Until then I had been covered by private health insurance but my insurers decided to withdraw cover so i had to wait until April for further surgery. I underwent 3 operations in 2 days but they couldn't get the stimulator to work properly. I saw another neurosurgeon in May who promised he could fix things but I am still waiting for the operation with no indication of when it might be. > > In the meantime I am in constant pain not only from my leg but also from the implant itself. It feels like it is trying to work its way through my skin and the area appears to be bruised and is incredibly sore. I can't sit down for very long or walk very far. The only medication that offers a degree of pain relief is Ketamine which I take in an oral solution but I don't like taking it as I had a rather nasty experience with it a few weeks ago. I took an accidental overdose due to a mix up at the pharmacy when the concentration of the solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The hallucinations were horrendous and the doctor told me that I was very lucky. I live on my own and the experience has left me feeling very alone and vunerable. > > I really don't know what to do any more I have no quality of life and am virtually housebound. The whole experience has had a profound effect not only on me but also on those people that I was closest to. I am on my own and have become very withdrawn and I could do with someone to talk to who understands and may know how I'm feeling. > > Thank you for listening. > > Best regards > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Welcome and sorry you're having so many problems with your stimulator. I'm rather new here too and it's good to be able to talk to people that understand what you're feeling and going through. Sometimes family has no idea, they've not gone through this. I don't have a stimulator yet, that will be Step Three for me. I'm just starting Step One on Wed. Medial Branch Blocks for Facet Joints. This group has been good for me, hope you enjoy it also. Margee' > > Hi everyone, > > My name is and I am having a few problems. > > I have an underlying problem with the circulation in my right leg. I have had 12 operations on my leg to date and as a result of all the surgery I have been left with chronic pain in my leg below the knee due to extensive nerve damage. I spent the best part of 3 months in hospital at the end of last year being pumped full of a cocktail of various drugs including morphine which did little for the pain. > > I had a stimulator fitted just before Christmas and it was the best present ever, no more pain and within 3 weeks I was off all medication and back at work. I felt that I had got my life back. Unfortunately the lead attached to my spine became detached and migrated downwards. I had further surgery to correct the situation in February when I had a different type of lead fitted which involved the removal of a part of the bone. This didn't work as a subsequent x-ray showed that the lead had become detached from the implant. > > Until then I had been covered by private health insurance but my insurers decided to withdraw cover so i had to wait until April for further surgery. I underwent 3 operations in 2 days but they couldn't get the stimulator to work properly. I saw another neurosurgeon in May who promised he could fix things but I am still waiting for the operation with no indication of when it might be. > > In the meantime I am in constant pain not only from my leg but also from the implant itself. It feels like it is trying to work its way through my skin and the area appears to be bruised and is incredibly sore. I can't sit down for very long or walk very far. The only medication that offers a degree of pain relief is Ketamine which I take in an oral solution but I don't like taking it as I had a rather nasty experience with it a few weeks ago. I took an accidental overdose due to a mix up at the pharmacy when the concentration of the solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The hallucinations were horrendous and the doctor told me that I was very lucky. I live on my own and the experience has left me feeling very alone and vunerable. > > I really don't know what to do any more I have no quality of life and am virtually housebound. The whole experience has had a profound effect not only on me but also on those people that I was closest to. I am on my own and have become very withdrawn and I could do with someone to talk to who understands and may know how I'm feeling. > > Thank you for listening. > > Best regards > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 ---Hi I am sao sorry you are having so many problems with your scs. I recieved mine the end of Feb. It has been a God send to me.. I wouldnt trade it for nothing. I love it. Hopefully this next Dr can get it fixed right.. What kind do you have? I have Medtronics... If you ever need to talk to someone I am usally sitting right here at my computer.. I also live alone so I understand being lonely.. but im here if you ever need me. take care ... there is alot of people on this site that have wonderful insight to what might be going on soft hugs T > > > > > > Hi everyone, > > > > My name is and I am having a few problems. > > > > I have an underlying problem with the circulation in my right leg. I > have had 12 operations on my leg to date and as a result of all the > surgery I have been left with chronic pain in my leg below the knee > due to extensive nerve damage. I spent the best part of 3 months in > hospital at the end of last year being pumped full of a cocktail of > various drugs including morphine which did little for the pain. > > > > I had a stimulator fitted just before Christmas and it was the best > present ever, no more pain and within 3 weeks I was off all medication > and back at work. I felt that I had got my life back. Unfortunately > the lead attached to my spine became detached and migrated downwards. > I had further surgery to correct the situation in February when I had > a different type of lead fitted which involved the removal of a part > of the bone. This didn't work as a subsequent x-ray showed that the > lead had become detached from the implant. > > > > Until then I had been covered by private health insurance but my > insurers decided to withdraw cover so i had to wait until April for > further surgery. I underwent 3 operations in 2 days but they couldn't > get the stimulator to work properly. I saw another neurosurgeon in May > who promised he could fix things but I am still waiting for the > operation with no indication of when it might be. > > > > In the meantime I am in constant pain not only from my leg but also > from the implant itself. It feels like it is trying to work its way > through my skin and the area appears to be bruised and is incredibly > sore. I can't sit down for very long or walk very far. The only > medication that offers a degree of pain relief is Ketamine which I > take in an oral solution but I don't like taking it as I had a rather > nasty experience with it a few weeks ago. I took an accidental > overdose due to a mix up at the pharmacy when the concentration of the > solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell > me. The hallucinations were horrendous and the doctor told me that I > was very lucky. I live on my own and the experience has left me > feeling very alone and vunerable. > > > > I really don't know what to do any more I have no quality of life > and am virtually housebound. The whole experience has had a profound > effect not only on me but also on those people that I was closest to. > I am on my own and have become very withdrawn and I could do with > someone to talk to who understands and may know how I'm feeling. > > > > Thank you for listening. > > > > Best regards > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 sorry just wanted to say Kathy G is co-owner mike owner > > > > Hi everyone, > > > > My name is and I am having a few problems. > > > > I have an underlying problem with the circulation in my right leg. > I have had 12 operations on my leg to date and as a result of all the > surgery I have been left with chronic pain in my leg below the knee > due to extensive nerve damage. I spent the best part of 3 months in > hospital at the end of last year being pumped full of a cocktail of > various drugs including morphine which did little for the pain. > > > > I had a stimulator fitted just before Christmas and it was the best > present ever, no more pain and within 3 weeks I was off all > medication and back at work. I felt that I had got my life back. > Unfortunately the lead attached to my spine became detached and > migrated downwards. I had further surgery to correct the situation in > February when I had a different type of lead fitted which involved > the removal of a part of the bone. This didn't work as a subsequent x- > ray showed that the lead had become detached from the implant. > > > > Until then I had been covered by private health insurance but my > insurers decided to withdraw cover so i had to wait until April for > further surgery. I underwent 3 operations in 2 days but they couldn't > get the stimulator to work properly. I saw another neurosurgeon in > May who promised he could fix things but I am still waiting for the > operation with no indication of when it might be. > > > > In the meantime I am in constant pain not only from my leg but also > from the implant itself. It feels like it is trying to work its way > through my skin and the area appears to be bruised and is incredibly > sore. I can't sit down for very long or walk very far. The only > medication that offers a degree of pain relief is Ketamine which I > take in an oral solution but I don't like taking it as I had a > rather nasty experience with it a few weeks ago. I took an accidental > overdose due to a mix up at the pharmacy when the concentration of > the solution was increased from 50mg/5ml to 250mg/5ml and they didn't > tell me. The hallucinations were horrendous and the doctor told me > that I was very lucky. I live on my own and the experience has left > me feeling very alone and vunerable. > > > > I really don't know what to do any more I have no quality of life > and am virtually housebound. The whole experience has had a profound > effect not only on me but also on those people that I was closest to. > I am on my own and have become very withdrawn and I could do with > someone to talk to who understands and may know how I'm feeling. > > > > Thank you for listening. > > > > Best regards > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hi Margee,  Thanks for your message. Its good to know that there are people out there that understand. I've lost so many friends over this. My son has been a God send and has been very supportive particularly over the last few months but he has now moved away to attend university so I wont get to see him again until Christmas and I do miss him.  I've also been having weekly nerve block injections since February. They give me a day or two of relief but my pain doctor has informed me that I can't have many more as they will end up causing even more damage to the nerves. I started off by having the injections administered under a general anaesthetic in hospital but now the pain has got so bad the doctor just gives them to me in his consulting room, ouch!!  Re: Hello Welcome and sorry you're having so many problems with your stimulator. I'm rather new here too and it's good to be able to talk to people that understand what you're feeling and going through. Sometimes family has no idea, they've not gone through this. I don't have a stimulator yet, that will be Step Three for me. I'm just starting Step One on Wed. Medial Branch Blocks for Facet Joints. This group has been good for me, hope you enjoy it also. Margee' > > Hi everyone, > > My name is and I am having a few problems. > > I have an underlying problem with the circulation in my right leg. I have had 12 operations on my leg to date and as a result of all the surgery I have been left with chronic pain in my leg below the knee due to extensive nerve damage. I spent the best part of 3 months in hospital at the end of last year being pumped full of a cocktail of various drugs including morphine which did little for the pain. > > I had a stimulator fitted just before Christmas and it was the best present ever, no more pain and within 3 weeks I was off all medication and back at work.. I felt that I had got my life back. Unfortunately the lead attached to my spine became detached and migrated downwards. I had further surgery to correct the situation in February when I had a different type of lead fitted which involved the removal of a part of the bone. This didn't work as a subsequent x-ray showed that the lead had become detached from the implant. > > Until then I had been covered by private health insurance but my insurers decided to withdraw cover so i had to wait until April for further surgery. I underwent 3 operations in 2 days but they couldn't get the stimulator to work properly. I saw another neurosurgeon in May who promised he could fix things but I am still waiting for the operation with no indication of when it might be. > > In the meantime I am in constant pain not only from my leg but also from the implant itself. It feels like it is trying to work its way through my skin and the area appears to be bruised and is incredibly sore. I can't sit down for very long or walk very far. The only medication that offers a degree of pain relief is Ketamine which I take in an oral solution but I don't like taking it as I had a rather nasty experience with it a few weeks ago. I took an accidental overdose due to a mix up at the pharmacy when the concentration of the solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The hallucinations were horrendous and the doctor told me that I was very lucky. I live on my own and the experience has left me feeling very alone and vunerable. > > I really don't know what to do any more I have no quality of life and am virtually housebound.. The whole experience has had a profound effect not only on me but also on those people that I was closest to. I am on my own and have become very withdrawn and I could do with someone to talk to who understands and may know how I'm feeling. > > Thank you for listening. > > Best regards > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hi ,  Thanks so much for your kind words.  I think that the hardest part for me is knowing that the implant works and that for a few weeks at the beginning of the year I had my life back and I felt the best that I had in a very long time and then for it to be taken away has been so very hard to cope with. I also got my hopes up with each new round of surgery so its all been very disappointing (understatement of the year!!)..  My implant is an ANS and I've just found out that the surgeon who is planning on doing the operation is looking to replace the whole thing. I have been in touch with ANS and they have just launched a new model which does everything mine does but it is a fraction of the size. My pain doctor has given it the go ahead so things may be looking up. I hope to know more later on in the week so I'll keep you posted.  Once again thank you so much for your kind words, they have been a great comfort and I feel as though I've found a new friend. Don't forget that I'm here too if you would like to chat.  Hugs to you too.  Re: Hello ---Hi I am sao sorry you are having so many problems with your scs. I recieved mine the end of Feb. It has been a God send to me.. I wouldnt trade it for nothing. I love it. Hopefully this next Dr can get it fixed right.. What kind do you have? I have Medtronics.. . If you ever need to talk to someone I am usally sitting right here at my computer.. I also live alone so I understand being lonely.. but im here if you ever need me. take care .... there is alot of people on this site that have wonderful insight to what might be going on soft hugs T > > > > > > Hi everyone, > > > > My name is and I am having a few problems. > > > > I have an underlying problem with the circulation in my right leg.. I > have had 12 operations on my leg to date and as a result of all the > surgery I have been left with chronic pain in my leg below the knee > due to extensive nerve damage. I spent the best part of 3 months in > hospital at the end of last year being pumped full of a cocktail of > various drugs including morphine which did little for the pain. > > > > I had a stimulator fitted just before Christmas and it was the best > present ever, no more pain and within 3 weeks I was off all medication > and back at work. I felt that I had got my life back. Unfortunately > the lead attached to my spine became detached and migrated downwards. > I had further surgery to correct the situation in February when I had > a different type of lead fitted which involved the removal of a part > of the bone. This didn't work as a subsequent x-ray showed that the > lead had become detached from the implant. > > > > Until then I had been covered by private health insurance but my > insurers decided to withdraw cover so i had to wait until April for > further surgery. I underwent 3 operations in 2 days but they couldn't > get the stimulator to work properly. I saw another neurosurgeon in May > who promised he could fix things but I am still waiting for the > operation with no indication of when it might be. > > > > In the meantime I am in constant pain not only from my leg but also > from the implant itself. It feels like it is trying to work its way > through my skin and the area appears to be bruised and is incredibly > sore. I can't sit down for very long or walk very far. The only > medication that offers a degree of pain relief is Ketamine which I > take in an oral solution but I don't like taking it as I had a rather > nasty experience with it a few weeks ago. I took an accidental > overdose due to a mix up at the pharmacy when the concentration of the > solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell > me. The hallucinations were horrendous and the doctor told me that I > was very lucky. I live on my own and the experience has left me > feeling very alone and vunerable. > > > > I really don't know what to do any more I have no quality of life > and am virtually housebound. The whole experience has had a profound > effect not only on me but also on those people that I was closest to. > I am on my own and have become very withdrawn and I could do with > someone to talk to who understands and may know how I'm feeling. > > > > Thank you for listening. > > > > Best regards > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008  Welcome to the group. My name is Sue, I'm one of the moderators of this wonderful group. You have come to the right place. Everyone here knows what it's like to live in pain every minute of every day. You're so right, living in chronic pain effects every part of our lives. Only someone who lives with chronic pain can understand what it's like. I also lost many friends. They couldn't deal with the fact that I couldn't do what I used to do. I'm sorry to hear that you have had such a tough time, but you must never give up hope. You never know what miracle waits around the corner. I have 2 spinal cord stimulators and a pain pump. The good news is that you know that the SCS works and the new doctor feels that he can help you. You must think positive. Before I had my implants, I was housebound, and extremely depressed, so I know exactly where you are coming from. It's so easy to dwell on the negative and to sink deeper and deeper. The SCS and the pump have given me my life back. I'm not the same as I was before I was injured, but the quality of my life has greatly improved!!! The most important thing is attitude. If you dwell on the negative, you will only get more depressed. If you think positve, count your blessing, what you're grateful for, you will start to feel better emotionally. If you have any questions or would like any information, I am here for you and everyone else.  Sue C Moderator From: Woolrich <john.woolrich@...> Subject: Hello Stimulator Date: Monday, October 13, 2008, 11:16 AM Hi everyone, My name is and I am having a few problems. I have an underlying problem with the circulation in my right leg. I have had 12 operations on my leg to date and as a result of all the surgery I have been left with chronic pain in my leg below the knee due to extensive nerve damage. I spent the best part of 3 months in hospital at the end of last year being pumped full of a cocktail of various drugs including morphine which did little for the pain. I had a stimulator fitted just before Christmas and it was the best present ever, no more pain and within 3 weeks I was off all medication and back at work. I felt that I had got my life back. Unfortunately the lead attached to my spine became detached and migrated downwards. I had further surgery to correct the situation in February when I had a different type of lead fitted which involved the removal of a part of the bone. This didn't work as a subsequent x-ray showed that the lead had become detached from the implant.. Until then I had been covered by private health insurance but my insurers decided to withdraw cover so i had to wait until April for further surgery. I underwent 3 operations in 2 days but they couldn't get the stimulator to work properly. I saw another neurosurgeon in May who promised he could fix things but I am still waiting for the operation with no indication of when it might be. In the meantime I am in constant pain not only from my leg but also from the implant itself. It feels like it is trying to work its way through my skin and the area appears to be bruised and is incredibly sore. I can't sit down for very long or walk very far. The only medication that offers a degree of pain relief is Ketamine which I take in an oral solution but I don't like taking it as I had a rather nasty experience with it a few weeks ago. I took an accidental overdose due to a mix up at the pharmacy when the concentration of the solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The hallucinations were horrendous and the doctor told me that I was very lucky. I live on my own and the experience has left me feeling very alone and vunerable. I really don't know what to do any more I have no quality of life and am virtually housebound. The whole experience has had a profound effect not only on me but also on those people that I was closest to. I am on my own and have become very withdrawn and I could do with someone to talk to who understands and may know how I'm feeling. Thank you for listening. Best regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Wow! that many injections? My doctor said there wouldn't be more than three, then he'd go to Step Two. > > > > Hi everyone, > > > > My name is and I am having a few problems. > > > > I have an underlying problem with the circulation in my right leg. I > have had 12 operations on my leg to date and as a result of all the > surgery I have been left with chronic pain in my leg below the knee > due to extensive nerve damage. I spent the best part of 3 months in > hospital at the end of last year being pumped full of a cocktail of > various drugs including morphine which did little for the pain. > > > > I had a stimulator fitted just before Christmas and it was the best > present ever, no more pain and within 3 weeks I was off all medication > and back at work.. I felt that I had got my life back. Unfortunately > the lead attached to my spine became detached and migrated downwards. > I had further surgery to correct the situation in February when I had > a different type of lead fitted which involved the removal of a part > of the bone. This didn't work as a subsequent x-ray showed that the > lead had become detached from the implant. > > > > Until then I had been covered by private health insurance but my > insurers decided to withdraw cover so i had to wait until April for > further surgery. I underwent 3 operations in 2 days but they couldn't > get the stimulator to work properly. I saw another neurosurgeon in May > who promised he could fix things but I am still waiting for the > operation with no indication of when it might be. > > > > In the meantime I am in constant pain not only from my leg but also > from the implant itself. It feels like it is trying to work its way > through my skin and the area appears to be bruised and is incredibly > sore. I can't sit down for very long or walk very far. The only > medication that offers a degree of pain relief is Ketamine which I > take in an oral solution but I don't like taking it as I had a rather > nasty experience with it a few weeks ago. I took an accidental > overdose due to a mix up at the pharmacy when the concentration of the > solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell > me. The hallucinations were horrendous and the doctor told me that I > was very lucky. I live on my own and the experience has left me > feeling very alone and vunerable. > > > > I really don't know what to do any more I have no quality of life > and am virtually housebound.. The whole experience has had a profound > effect not only on me but also on those people that I was closest to. > I am on my own and have become very withdrawn and I could do with > someone to talk to who understands and may know how I'm feeling. > > > > Thank you for listening. > > > > Best regards > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 You are so right so, depression and chronic pain go hand in hand if you don't have your pain in control. The depression really has a hold of me. The pain and the fact that I don't have insurance to see a doctor. Some days I fell like giving up ! That's what happened to my Dad and Mom, they could not take it and they decided to check out. Now I'm left all alone and think of checking out myself. I take meds for depression and some times I don't because I think who cares. I can't wait until I get my insurance so I can get Help. It's hell to want help and have no means of getting it. Sorry for this story but when I think about it I'm just yelling from inside. P.S. The hard part is my Mom went on thanksgiving and my Dad went on Fathers Day. And they wonder why I'm Crazy ! > > From: Woolrich john.woolrich@... > Subject: Hello > Stimulator > Date: Monday, October 13, 2008, 11:16 AM > > > > > > > Hi everyone, > > My name is and I am having a few problems. > > I have an underlying problem with the circulation in my right leg. I have had 12 operations on my leg to date and as a result of all the surgery I have been left with chronic pain in my leg below the knee due to extensive nerve damage. I spent the best part of 3 months in hospital at the end of last year being pumped full of a cocktail of various drugs including morphine which did little for the pain. > > I had a stimulator fitted just before Christmas and it was the best present ever, no more pain and within 3 weeks I was off all medication and back at work. I felt that I had got my life back. Unfortunately the lead attached to my spine became detached and migrated downwards. I had further surgery to correct the situation in February when I had a different type of lead fitted which involved the removal of a part of the bone. This didn't work as a subsequent x-ray showed that the lead had become detached from the implant.. > > Until then I had been covered by private health insurance but my insurers decided to withdraw cover so i had to wait until April for further surgery. I underwent 3 operations in 2 days but they couldn't get the stimulator to work properly. I saw another neurosurgeon in May who promised he could fix things but I am still waiting for the operation with no indication of when it might be. > > In the meantime I am in constant pain not only from my leg but also from the implant itself. It feels like it is trying to work its way through my skin and the area appears to be bruised and is incredibly sore. I can't sit down for very long or walk very far. The only medication that offers a degree of pain relief is Ketamine which I take in an oral solution but I don't like taking it as I had a rather nasty experience with it a few weeks ago. I took an accidental overdose due to a mix up at the pharmacy when the concentration of the solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The hallucinations were horrendous and the doctor told me that I was very lucky. I live on my own and the experience has left me feeling very alone and vunerable. > > I really don't know what to do any more I have no quality of life and am virtually housebound. The whole experience has had a profound effect not only on me but also on those people that I was closest to. I am on my own and have become very withdrawn and I could do with someone to talk to who understands and may know how I'm feeling. > > Thank you for listening. > > Best regards > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hey Margie! I wish you all the luck and success with your blocks on Wednesday!! I was so glad to hear that the group has been helpful to you and for you...that is great! You are so right when you say that family just doesn't understand it all....no matter how supportive and great they are...they are not the ones inside the pain....they can give us unconditional love and support which is totally awesome, but no matter how hard they try...they do not know what we experience on a daily basis...and this is why we can help eachother so greatly! I can't tell you the friendships and help that I have received from the great folks in this group....and I truly hope you have the same! Gentle hugs and best of luck to you on Wednesday, kathy G. Group Co-owner **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local.mapquest.com/?ncid=emlcntnew00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 First things first, you are not crazy. Don't let anyone tell you that, and don't tell yourself that. You have been through the unimaginable. You can't give up. You are important. You have alot to live for. You have to think postive. Isn't there some kind of aid that you can get without insurance? There has to be some place you can go for help. Maybe your doctor can recommend something. It would be so helpful if you could speak to someone. I don't know what you are going through, but I have lost both my parents, so I know the empty, lost feeling. You have this group and we are here to support you in any way we can. It's hard enough to lose a parent, but to lose them on a special day, makes it so much harder. Keeping all these feeling bottled up only increasing your pain level. I am here if you or anyone else needs me. Â Sue C Moderator From: cobranine <cobranine@...> Subject: Re: Hello Stimulator Date: Tuesday, October 14, 2008, 1:43 AM You are so right so, depression and chronic pain go hand in hand if you don't have your pain in control. The depression really has a hold of me. The pain and the fact that I don't have insurance to see a doctor. Some days I fell like giving up ! That's what happened to my Dad and Mom, they could not take it and they decided to check out. Now I'm left all alone and think of checking out myself. I take meds for depression and some times I don't because I think who cares. I can't wait until I get my insurance so I can get Help. It's hell to want help and have no means of getting it. Sorry for this story but when I think about it I'm just yelling from inside. P.S. The hard part is my Mom went on thanksgiving and my Dad went on Fathers Day. And they wonder why I'm Crazy ! > > From: Woolrich john.woolrich@ ... > Subject: Hello > Stimulator@gro ups.com > Date: Monday, October 13, 2008, 11:16 AM > > > > > > > Hi everyone, > > My name is and I am having a few problems. > > I have an underlying problem with the circulation in my right leg. I have had 12 operations on my leg to date and as a result of all the surgery I have been left with chronic pain in my leg below the knee due to extensive nerve damage. I spent the best part of 3 months in hospital at the end of last year being pumped full of a cocktail of various drugs including morphine which did little for the pain. > > I had a stimulator fitted just before Christmas and it was the best present ever, no more pain and within 3 weeks I was off all medication and back at work. I felt that I had got my life back. Unfortunately the lead attached to my spine became detached and migrated downwards. I had further surgery to correct the situation in February when I had a different type of lead fitted which involved the removal of a part of the bone. This didn't work as a subsequent x-ray showed that the lead had become detached from the implant.. > > Until then I had been covered by private health insurance but my insurers decided to withdraw cover so i had to wait until April for further surgery. I underwent 3 operations in 2 days but they couldn't get the stimulator to work properly. I saw another neurosurgeon in May who promised he could fix things but I am still waiting for the operation with no indication of when it might be. > > In the meantime I am in constant pain not only from my leg but also from the implant itself. It feels like it is trying to work its way through my skin and the area appears to be bruised and is incredibly sore. I can't sit down for very long or walk very far. The only medication that offers a degree of pain relief is Ketamine which I take in an oral solution but I don't like taking it as I had a rather nasty experience with it a few weeks ago. I took an accidental overdose due to a mix up at the pharmacy when the concentration of the solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell me. The hallucinations were horrendous and the doctor told me that I was very lucky. I live on my own and the experience has left me feeling very alone and vunerable. > > I really don't know what to do any more I have no quality of life and am virtually housebound. The whole experience has had a profound effect not only on me but also on those people that I was closest to. I am on my own and have become very withdrawn and I could do with someone to talk to who understands and may know how I'm feeling. > > Thank you for listening. > > Best regards > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hi ! My name is Kathy G. and I co-own the group with Mike, our founder. I am so glad that you wrote in to get the support and help that this group of folks can give to you! So many of us really know the struggles that you are living with...and even though we can't take the pain and struggles away, obviusly, we can give you our experiences, some suggestions and receive suggestions back from you on other areas. This is why this is so great! I am so very sorry to hear of your nightmare, . With regards to the horrendous experience with the Ketamine...I can really understand. I had three injections of it while in the hospital for pain control. The spasms and pain I was having were so severe that is all that they had left to try...but they did not mix the medication that allievates the hallucinations...and oh dear God...they were awful...they lasted for several hours each time. Are you having nightmares now? If you are, it most probably is from the Ketamine. I was told that the nightmares that I was having was from the the Ketamine, and they lasted for about 6 months....but the intensity of them did decrease with each month. I hope you are not having them, but if you are...maybe knowing why might help you. As you said that this is really the only med that is helping you...as crazy as this is going to sound coming from me with my experience...I wouldn't push it aside altogether...maybe you can order it from that pharmacy or a different one already in the premeasured dose that you need..instead of any human error happening again with mixing it. Another really good idea is a pain pump. I had one for quite some time and it really, really made a world of difference. This way, all the meds are pre-measured and are in the pump...not many oral meds are needed for pain relief..if any...and the pump is totally controlled by the dr. The pump is designed to reduce the pain by delivering meds to the intrathecal space surrounding the spinal cord. It is great also because smaller doses of meds are needed to get relief. You might really want to consider this route with your pain doc. What has your Pain management dr or neuro surgeon suggested doing about the stim itself? If you are having to wait so long to be scheduled with this new neuro surgeon...maybe it is time to find another one. If you want, you can email me directly where you live...what city and state...and I will look into some neurosurgoens for you....maybe one that you haven't tried who will take your case alot more seriously than this dr surely is. No one should have to wait this long in agony. This is just not right to you, , and I am so sorry that it is happening to you. My email address is _KGavi@..._ (mailto:KGavi@...) and my cell number is (215) 783-9066. Please call or write me any time...this is why Mike and I have this group...to help out when we can. I have received so much love and friendship from these great folks ...and I am sure you will feel the suppo rt too! I can really understand that you have become withdrawn...pain will do that just in itself...but when the pain is so severe...and it seems that it can't be helped...that old depression rears it's ugly head...and I think we all know about that guy...but hopefully either the neuro surgeon you have now will finally scedule you....keep calling and be a hemmroid..(nicer way of saying pain in the you know where) until you get satisfaction, or seek another neurosurgeons help. One way, hopefully your stim will be fixed. Please really think about the pain pump. Here is the site for the company that I had my pump from...and there are others out there too. Medtronic.com Here you can read all about the pumps. I am not sure what your illness is, . I have severe RSD now for 26 years. They now call it complex regional pain syndrome....but it will always be RSD to me. I have had it since age 14. I hope that some of this infor helps you, . Please know that Mike and I are always here...as are our moderators...I know that you have spoken to some of them...one being Kathy Sweet and Sue C. These ladies are awesome people and really are great with their supportive and loving ways, as are all our moderators. All the group members are really great folks who are in the same boat as the rest of us...and help each other through support, laughter and knowledge...which is power..power to help ourselves! Gentle hugs to you and all, Kathy G. Group Co-owner **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local.mapquest.com/?ncid=emlcntnew00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hello! When I read your post..all I could do was cry....one reason was because of understanding the pain you are in and knowing that deep down dark place that the depression can take you when it has hold on you...and secondly since my heart is breaking for you about the fact that you lost your parents, but furthermore how you lost them. I am so sorry about your parents. Please, please I beg you not to harm yourself no matter how tough things get. You are important. You are important to this group of folks who want to help you... You most likely do not see it now...but YOU HAVE SO MUCH TO LIVE FOR!! My name is Kathy G. I am one of the owners of this awesome and incredible group. Please let me help you. What state are you living in? I am sure that there is some type of aid that is available to you...if you want, email me the following information and I will see what I can find out about aid and help that you can receive. Or you can call me at (215) 783-9066. This is my cell number. Please, let me find some help for you where you live. I am sure that there is some kind of assistance where you live since you do not have any health insurance and you are in desperate need of pain management. If you would like some help...I will find out what kind of assistance that is available to you in your area. I will need you to email me privately..the following 411...what city and state you reside. Your age. How long you have have had your physical disability, and what the disability is. You are not crazy for how you feel! I cannot imagine how you have made it this far on your own...without any help. You now have help...even if it is mostly shoulders to cry on and someone to listen, really listen. We are all here for you. Please know that I care...really care and will do EVERYTHING I can to get you the help that you so desperately need. Our group of folks here is just incredible...folks who are in the same boat...pain and sometimes misery....but we help each other with the misery. Please email me or call me with that 411 and I will get right on it. You have a whole bunch of folks, even though you can't see us, who DO care about you...and what happens to you...so Please, email me. You are and will stay in my thoughts and prayers. Please either contact me. What you tell me will stay between us....that is a promise. If you don't feel comfortable doing that..please contact someone in your city and state who will be able to give you some assistance. You are important! Believe it or not...things will get better with some help and the biggest thing...pain management. Gentle hugs to you and all, Kathy G. Group Co-owner **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local.mapquest.com/?ncid=emlcntnew00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2008 Report Share Posted October 13, 2008 Hey Margie and ! I read your posts....wow...I hope the injections are helping a wee bit, ! I have been getting the blocks since the age of 14. Like you, , they give me a day to recover, and then right back into it. To date, I have had over 210 blocks...all differnet ones though. I have RSD and that is why I had been getting the blocks. For some folks they are a God send. For me...they didn't do too much except make a part of my body numb...of course it was never the part that I needed though. They would try to get my arms and my face would be numb. They would shoot for my right leg and you guessed it...it would hit the left one..it happened with every doc too...so I can't blame them...it is my weirdo body...lol Back when I was 15, in PA I had to travel to NY for a block that had not been FDA approved in PA...but was in NY....even that one didn't help. I have recently tried some more for my legs...as they are quite bad...and nope... What I am getting at...isn't trying to be pessimistic, but realisitc...some folks it takes a long time and alot of blocks to help them...hang in. After over 200 blocks, one finally worked..and worked well enough that I got over 4 hours of sleep....straight through...it was the best sleep I have had in decades! Hang in with them and I wish you luck! Gentle hugs to you both and all, KAthy G. Co-owner **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http ://local.mapquest.com/?ncid=emlcntnew00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 Yup, I'm desperate! Things are a bit back to front for me as I've already gone through steps 1 to 3 and its just because I'm waiting for my stimulator to be fixed that I'm having these injections. Before I was given Ketamine to use at home (previously I was only given Ketamine via intravenous drip when I was hospitalised) I was having up to 3 injections a week! Re: Hello Wow! that many injections? My doctor said there wouldn't be more than three, then he'd go to Step Two. > > > > Hi everyone, > > > > My name is and I am having a few problems. > > > > I have an underlying problem with the circulation in my right leg. I > have had 12 operations on my leg to date and as a result of all the > surgery I have been left with chronic pain in my leg below the knee > due to extensive nerve damage. I spent the best part of 3 months in > hospital at the end of last year being pumped full of a cocktail of > various drugs including morphine which did little for the pain. > > > > I had a stimulator fitted just before Christmas and it was the best > present ever, no more pain and within 3 weeks I was off all medication > and back at work.. I felt that I had got my life back. Unfortunately > the lead attached to my spine became detached and migrated downwards. > I had further surgery to correct the situation in February when I had > a different type of lead fitted which involved the removal of a part > of the bone. This didn't work as a subsequent x-ray showed that the > lead had become detached from the implant. > > > > Until then I had been covered by private health insurance but my > insurers decided to withdraw cover so i had to wait until April for > further surgery. I underwent 3 operations in 2 days but they couldn't > get the stimulator to work properly. I saw another neurosurgeon in May > who promised he could fix things but I am still waiting for the > operation with no indication of when it might be. > > > > In the meantime I am in constant pain not only from my leg but also > from the implant itself. It feels like it is trying to work its way > through my skin and the area appears to be bruised and is incredibly > sore. I can't sit down for very long or walk very far. The only > medication that offers a degree of pain relief is Ketamine which I > take in an oral solution but I don't like taking it as I had a rather > nasty experience with it a few weeks ago. I took an accidental > overdose due to a mix up at the pharmacy when the concentration of the > solution was increased from 50mg/5ml to 250mg/5ml and they didn't tell > me. The hallucinations were horrendous and the doctor told me that I > was very lucky. I live on my own and the experience has left me > feeling very alone and vunerable. > > > > I really don't know what to do any more I have no quality of life > and am virtually housebound.. The whole experience has had a profound > effect not only on me but also on those people that I was closest to. > I am on my own and have become very withdrawn and I could do with > someone to talk to who understands and may know how I'm feeling. > > > > Thank you for listening. > > > > Best regards > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 Thank you Kathy, my first spinal blocks are tomorrow morning. I hope they help me, if not he has other procedures he planned with us. The only thing is I've been taken back off my aspirin/day for my heart during this. If blocks don't work for me, he plans Step Two to be Radio Frequency Neurotomy. > > Hey Margie and ! > > I read your posts....wow...I hope the injections are helping a wee bit, > ! I have been getting the blocks since the age of 14. Like you, , they > give me a day to recover, and then right back into it. To date, I have had > over 210 blocks...all differnet ones though. > > I have RSD and that is why I had been getting the blocks. For some folks > they are a God send. For me...they didn't do too much except make a part of my > body numb...of course it was never the part that I needed though. They > would try to get my arms and my face would be numb. They would shoot for my > right leg and you guessed it...it would hit the left one..it happened with every > doc too...so I can't blame them...it is my weirdo body...lol > > Back when I was 15, in PA I had to travel to NY for a block that had not > been FDA approved in PA...but was in NY....even that one didn't help. I have > recently tried some more for my legs...as they are quite bad...and nope... > > What I am getting at...isn't trying to be pessimistic, but realisitc...some > folks it takes a long time and alot of blocks to help them...hang in. After > over 200 blocks, one finally worked..and worked well enough that I got over 4 > hours of sleep....straight through...it was the best sleep I have had in > decades! > > Hang in with them and I wish you luck! > > Gentle hugs to you both and all, > > KAthy G. > Co-owner > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out (http > ://local.mapquest.com/?ncid=emlcntnew00000002) > > > Quote Link to comment Share on other sites More sharing options...
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