Re: sheri

[Guest guest]

Sheri,

It gets to be very frustrating when you have 3 different doctors that don't talk to one another. Try to just let it go for the rest of the day, because emotional distress known otherwise as stress can make your RSD worse. So do something relaxing whether that be taking a nice bubble bath with only candles for lighting, or reading a book under some shade.

I will say a prayer for you that these doctors get their act together.

Lin

[Guest guest]

glad to hear that you are doing better. now ust go slow and easy.

cathy

[Guest guest]

Sheri - Okay, at your request I will answer your question. Put your feet up because it's going to be a long answer as it is less a letter to you than a response to your request for those of us who have had an SCS implanted to share our experience.

As you may know, I had the procedure for the SCS in the cervical area in November of 2003 with the final implantation occurring after a trial of approximately one week. I returned to work full-time nine days after the "final step" of the implantation process. No problem.

Roughly three weeks after having the sutures removed from the area where they put in the battery pack (on my side about several inches below my armpit), the incision ruptured necessitating emergency surgery to remove the battery pack, flush the area, debride certain parts of the area, and put the pack back in. Not exactly excited by the complication, with some irritation I dealt with it for what it was....an inconvenient disruption. It happened the night before Thanksgiving (with my car trunk filled with groceries) which, as it turned out, was a help since I didn't end up having to take any time off from work. I returned to work on the following Monday as scheduled (lol and was on-call for the entire agency for all of those days with the exception of someone kicking in for me on the evening of the surgery.)

As the swelling around the area of the leads decreased, however, the SCS became increasingly "positional." It didn't offer the degree of relief that I would have hoped but we went with the idea that things might stabilize over time as everything scarred into place. No problem. I'm a patient person.

In March, four months after the original surgery, my docs worked with me about the idea of having a more invasive surgical procedure done that would likely reduce how positional (and subsequently ineffective) the SCS was. Apparently my epidural space, as visualized on a pre-op MRI, was abnormally "capacious" (a pretty word for large). They theorized that I might have better success with having a full plate of electrodes implanted directly into the epidural space. They included a neurosurgeon for this as it involved removing a section of one of the vertebra. They also removed the old electrode at this time as well as the old leads. I stayed in the hospital for this one since I had previously had difficulty with vomiting the first time in response to the anesthesia and they wanted me to be more comfortable. I returned to work, again full-time, 11 days later. I was still pretty incomfortable but I was able to manage

without medication by that point and knew that I'd be fine. And I was.

Although this approach offered about an 80% reduction in my pain level, after the swelling went down, this relief diminished over time. They have checked the placement of the leads, etc., but they again think that relative lack of success is attributable to the size of my epidural space and the fact that cervically placed SCS's tend to be more positional than those placed in the lower back. Mine is not a success story, but I have no regrets over having the surgery. We gave it our best shot.

I know that you have asked that we write our experiences so that you might share them with the psychotherpist that you are seeing pre-operatively. I have no issue with your sharing this note. For background.....I was diagnosed with RSD 13 years ago following a fall that resulted in my fracturing my elbow in seven places. The severity of the fracture was not fully seen by the covering GP that I saw on the day of the injury. At the point that I actually was seen by an orthopedist (one week post-injury) it was too late to do the surgery that he said would have involved putting in a spacer. We hung in there with our fingers crossed, hoping that it would adequately heal on its own. I was intentionally not casted and PT was started immediately to avoid a permanently frozen joint. After three months when it became clear that many of the bone pieces were not destined to become "team players," I had surgery that involved a

resection (removal) of the radial head, part of the radial neck, bone fragments that were playing tiddley-winks in the outfield. With considerable PT I was able to regain within 18 month's time almost all function of my arm and hand. My arm never was able to fully extend at the elbow and I did not regain full pronation or supination at the wrist. All in all, given the severity of the break, I was lucky to get back as much function as I did.

I was not diagnosed as having RSD for almost two years after the original injury. Although my pain remained considerable as did the swelling and discoloration, my symptoms were viewed as understandable in consideration of the nature of the injury and the accmpanying tissue and nerve damage. Once diagnosed with RSD and once treatment was initiated I was within several years time able to get things to a level that I could cope with. Without pain? No. PIssed that I had gone through so much? You betcha. Sad that I had to give up playing piano and flute as well as many other things that I had enjoyed for so long? I sure was. I didn't, however, want RSD or treatment for it to rule my life. I stuck with dealing with the exercises on my own, using my hand and arm as much as I could (and yes it had spread also to my same-side foot and lower leg), and making the best of it. Essentially, four years after my

original injury, I accepted the impact that it had on my life and moved on.

I dearly wish that it had been left at that. Two years ago, I noticed a worsening of symptoms that became severe enough that I could no longer just go with the flow. While I at first thought that it was a bit of a flare-up, I began to realize that it felt "different" than the RSD and was far more localized. I saw my doc who scheduled an EMG which showed severe slowing of the ulnar nerve at the elbow and compressions of the nerve in several areas. Surgery was scheduled and performed by a doc who poo-pooed the need for any kind of pro-active treatment to offset the possibilty of the worsening of the RSD. I realize now that I should have paid more attention to his description of RSD as a "garbage pail diagnosis" and his full dismissal of my even having RSD. The ulnar nerve transposition surgery, done on an out-pt. basis, was "more complicated than he had expected." Two days post-op I had an incredible

seige of pain and was admitted to the hospital. Although two of his partners described it as a resurgence of the RSD he offered that he disagreed with the idea of RSD again, offering that the surgery had been "arduous" and that the damage had been "more extensive than he had anticipated."

After six months with only marginal improvement in my symptoms, a repeat EMG was done. As compared to the pre-op MRI, motor damage was slightly improved and sensory damage was significantly worsened. My GP said "enough....I want them to see you at the pain clinic again." Groan, but I went. That led to a series of stellate and bier blocks that offered welcomed, however brief, relief. I've been involved with them for a little over a year now, done the SCS route, and while we've been doing a fairly good job of managing things with the axillary catheter, it's not a permanent treatment option. My symptoms are pretty significant and consistent with a CRPS-II diagnosis. Additionally, I've lost almost all of the use of my hand in the areas that are ennervated by the ulnar nerve. We've exhausted most treatment options (although I am being approached to participate in a clinical trial of thalidomide and am

considering it as possibility). We're now looking at a plan that includes the use of narcotics. I'm not pleased with it at all, but I have reached the point that it's either give up work because of the pain or give all of this the best chance that I can by working with them to come up with a combination of medications that might just let me keep functioning at a level that will permit me to continue to work full time and live as fully as possible.

Soooo to answer your question about the emotional impact of having an SCS implanted...I'm glad that I gave it the best try that I could. If I'd given up, then I would have always wondered if I had shut the door on an opporunity to feel better. Be hopeful for success, but prepared for it maybe not being everything that you would hope it would be. For many, it has offered a great deal of relief. For others, it has not been successful. The bulk of folks out there probably fall somewhere between the two extremes. The emotional impact of having had the implant was small potatos compared to the impact of having RSD. I hate having RSD. I hate more, however, the inclination on some days to just throw up a white flag and say "screw it, I'll just give in to it"....an urge that at times I have to really work at countering. There's a part of me that resents even having to have those kind of days. I've been

blessed by a stubborn streak that has kept me working full-time (50+ hours weekly) as a child and family therapist for a terrific agency that provides long-term treatment to children, adolescents, and their families. In addition to this work, I also provide consultation to the courts and area fire departments on juvenile firesetting and have just recently (as you know) single-handedly writing the second draft of a book (a modification of a type of cognitive behavioral therapy that has been used with adults that I have adapted for work with older children and young teens). I may not make to retirement, I look to making sure that each day has something in it that I can feel good about. As polyanna-ish as it may sound, it's an attitude that has worked for me. My best to you.....I hope that whatever will work out best for you will happen. Barbara

[Guest guest]

Barbara,

Thank you for answering my request. I hope that when I send these he will under stand more about trying to make decisions about peoples lives. My foot dr thinks that maybe it will make him understand why I got so angry. So thank you again.

Sheri

-- Re: Sheri

Sheri - Okay, at your request I will answer your question. Put your feet up because it's going to be a long answer as it is less a letter to you than a response to your request for those of us who have had an SCS implanted to share our experience.

As you may know, I had the procedure for the SCS in the cervical area in November of 2003 with the final implantation occurring after a trial of approximately one week. I returned to work full-time nine days after the "final step" of the implantation process. No problem.

Roughly three weeks after having the sutures removed from the area where they put in the battery pack (on my side about several inches below my armpit), the incision ruptured necessitating emergency surgery to remove the battery pack, flush the area, debride certain parts of the area, and put the pack back in. Not exactly excited by the complication, with some irritation I dealt with it for what it was....an inconvenient disruption. It happened the night before Thanksgiving (with my car trunk filled with groceries) which, as it turned out, was a help since I didn't end up having to take any time off from work. I returned to work on the following Monday as scheduled (lol and was on-call for the entire agency for all of those days with the exception of someone kicking in for me on the evening of the surgery.)

As the swelling around the area of the leads decreased, however, the SCS became increasingly "positional." It didn't offer the degree of relief that I would have hoped but we went with the idea that things might stabilize over time as everything scarred into place. No problem. I'm a patient person.

In March, four months after the original surgery, my docs worked with me about the idea of having a more invasive surgical procedure done that would likely reduce how positional (and subsequently ineffective) the SCS was. Apparently my epidural space, as visualized on a pre-op MRI, was abnormally "capacious" (a pretty word for large). They theorized that I might have better success with having a full plate of electrodes implanted directly into the epidural space. They included a neurosurgeon for this as it involved removing a section of one of the vertebra. They also removed the old electrode at this time as well as the old leads. I stayed in the hospital for this one since I had previously had difficulty with vomiting the first time in response to the anesthesia and they wanted me to be more comfortable. I returned to work, again full-time, 11 days later. I was still pretty incomfortable but I was able to manage without medication by that point and knew that I'd be fine. And I was.

Although this approach offered about an 80% reduction in my pain level, after the swelling went down, this relief diminished over time. They have checked the placement of the leads, etc., but they again think that relative lack of success is attributable to the size of my epidural space and the fact that cervically placed SCS's tend to be more positional than those placed in the lower back. Mine is not a success story, but I have no regrets over having the surgery. We gave it our best shot.

I know that you have asked that we write our experiences so that you might share them with the psychotherpist that you are seeing pre-operatively. I have no issue with your sharing this note. For background.....I was diagnosed with RSD 13 years ago following a fall that resulted in my fracturing my elbow in seven places. The severity of the fracture was not fully seen by the covering GP that I saw on the day of the injury. At the point that I actually was seen by an orthopedist (one week post-injury) it was too late to do the surgery that he said would have involved putting in a spacer. We hung in there with our fingers crossed, hoping that it would adequately heal on its own. I was intentionally not casted and PT was started immediately to avoid a permanently frozen joint. After three months when it became clear that many of the bone pieces were not destined to become "team players," I had surgery that involved a resection (removal) of the radial head, part of the radial neck, bone fragments that were playing tiddley-winks in the outfield. With considerable PT I was able to regain within 18 month's time almost all function of my arm and hand. My arm never was able to fully extend at the elbow and I did not regain full pronation or supination at the wrist. All in all, given the severity of the break, I was lucky to get back as much function as I did.

I was not diagnosed as having RSD for almost two years after the original injury. Although my pain remained considerable as did the swelling and discoloration, my symptoms were viewed as understandable in consideration of the nature of the injury and the accmpanying tissue and nerve damage. Once diagnosed with RSD and once treatment was initiated I was within several years time able to get things to a level that I could cope with. Without pain? No. PIssed that I had gone through so much? You betcha. Sad that I had to give up playing piano and flute as well as many other things that I had enjoyed for so long? I sure was. I didn't, however, want RSD or treatment for it to rule my life. I stuck with dealing with the exercises on my own, using my hand and arm as much as I could (and yes it had spread also to my same-side foot and lower leg), and making the best of it. Essentially, four years after my original injury, I accepted the impact that it had on my life and moved on.

I dearly wish that it had been left at that. Two years ago, I noticed a worsening of symptoms that became severe enough that I could no longer just go with the flow. While I at first thought that it was a bit of a flare-up, I began to realize that it felt "different" than the RSD and was far more localized. I saw my doc who scheduled an EMG which showed severe slowing of the ulnar nerve at the elbow and compressions of the nerve in several areas. Surgery was scheduled and performed by a doc who poo-pooed the need for any kind of pro-active treatment to offset the possibilty of the worsening of the RSD. I realize now that I should have paid more attention to his description of RSD as a "garbage pail diagnosis" and his full dismissal of my even having RSD. The ulnar nerve transposition surgery, done on an out-pt. basis, was "more complicated than he had expected." Two days post-op I had an incredible seige of pain and was admitted to the hospital. Although two of his partners described it as a resurgence of the RSD he offered that he disagreed with the idea of RSD again, offering that the surgery had been "arduous" and that the damage had been "more extensive than he had anticipated."

After six months with only marginal improvement in my symptoms, a repeat EMG was done. As compared to the pre-op MRI, motor damage was slightly improved and sensory damage was significantly worsened. My GP said "enough....I want them to see you at the pain clinic again." Groan, but I went. That led to a series of stellate and bier blocks that offered welcomed, however brief, relief. I've been involved with them for a little over a year now, done the SCS route, and while we've been doing a fairly good job of managing things with the axillary catheter, it's not a permanent treatment option. My symptoms are pretty significant and consistent with a CRPS-II diagnosis. Additionally, I've lost almost all of the use of my hand in the areas that are ennervated by the ulnar nerve. We've exhausted most treatment options (although I am being approached to participate in a clinical trial of thalidomide and am considering it as possibility). We're now looking at a plan that includes the use of narcotics. I'm not pleased with it at all, but I have reached the point that it's either give up work because of the pain or give all of this the best chance that I can by working with them to come up with a combination of medications that might just let me keep functioning at a level that will permit me to continue to work full time and live as fully as possible.

Soooo to answer your question about the emotional impact of having an SCS implanted...I'm glad that I gave it the best try that I could. If I'd given up, then I would have always wondered if I had shut the door on an opporunity to feel better. Be hopeful for success, but prepared for it maybe not being everything that you would hope it would be. For many, it has offered a great deal of relief. For others, it has not been successful. The bulk of folks out there probably fall somewhere between the two extremes. The emotional impact of having had the implant was small potatos compared to the impact of having RSD. I hate having RSD. I hate more, however, the inclination on some days to just throw up a white flag and say "screw it, I'll just give in to it"....an urge that at times I have to really work at countering. There's a part of me that resents even having to have those kind of days. I've been blessed by a stubborn streak that has kept me working full-time (50+ hours weekly) as a child and family therapist for a terrific agency that provides long-term treatment to children, adolescents, and their families. In addition to this work, I also provide consultation to the courts and area fire departments on juvenile firesetting and have just recently (as you know) single-handedly writing the second draft of a book (a modification of a type of cognitive behavioral therapy that has been used with adults that I have adapted for work with older children and young teens). I may not make to retirement, I look to making sure that each day has something in it that I can feel good about. As polyanna-ish as it may sound, it's an attitude that has worked for me. My best to you.....I hope that whatever will work out best for you will happen. Barbara

[Guest guest]

glad to see you are back. cathy