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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 12-04-2008, 09:35 AM   #1
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RSD and Spinal Cord Stimulator

Hi-

I was just diagnosed with RSD in my left lower extremity/foot back in October, but probably have had it since this past July. I am seeing a pain specialist. They did a symp. block last week, which confirmed the RSD too. I was completely pain free for 8-10 hrs post-injection, but started gradually having a return of symptoms several days later and then have had full-blown symptoms again since Sunday. I saw the pain specilist again today, and they are already recommending a Spinal Cord Stimulator.

How many injections are typically done prior to a SCS? I decided to have another block next week to try and turn things around prior to surgery. Are there any other options??? I know they want to treat as quickly as possible to prevent spreading since I am so young, but I was wondering if there are any other treatment options available? I have heard the SCS is effective for the RSD that I have in my foot. I just hate to go through a surgery--Has anyone else had a SCS placed? And was it successful?

Thanks.

 
Old 12-04-2008, 04:19 PM   #2
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Re: RSD and Spinal Cord Stimulator

First of all they should be giving you 1-2 blocks a week to try and put this into remission!! It seems to me you had a pretty good result from the one block. Saying, "get an scs now", seems way premature to me. The ones I've known who've gotten an scs were a few years into rsd and meds weren't doing much to help the pain and blocks either didn't work at all or only lasted a couple of hours after.

An scs is tricky, IMO. I've seen many get it, over the past almost 6 years I've had rsd, and a lot of them, end up with complications and a lot of spreading. I don't want to scare anyone but I firmly believe that "sugar coating" things or saying it might help isn't helping at all. I believe everyone should know the reality of the scs business. Some people have had success with it and no problems but, again, the reality is it doesn't keep the pain down for a long time.

I think the doc, as I mentioned, should be giving 1-2 blocks a week, have you on meds for pain control and a med like neurontin,lyrica or cymbalta to help the sympathetic nervous system stay as calm as possible, have you doing physical therapy if needed as well. Those are the 1st steps taken in the first year or so. If you're able, you might want to seriously consider finding yourself a new pm (pain management) if this pm is going to be pushing for such a big surgery wayyyy to soon!

Hugs,

Karen

 
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Old 12-05-2008, 12:06 AM   #3
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Re: RSD and Spinal Cord Stimulator

Hi,
I also have RSD in my left foot because I had foot surgery in July of 07. Diagnosed in September of 07 and I see a Rheumatologist who specializes in treating RSD. He's wonderful. I'm on Cymbalta and Lyrica, with an occasional Vicodin. I haven't had any blocks but am thinking about seeing if there's an anethesiologist that does the Lidocaine infusions -- Michelle on this board highly recommends them.
I would be very leary of your pain management doctor because you're so new to RSD. I've been on this site for about a year and many have problems with them and it's surgery and we're not supposed to have anything invasive because it can make the RSD flare. I do understand that sometimes, there's no other option except to have surgery. They need to get you started on medication. I began with Neurontin and got up to 3600 mg daily, but it wasn't helping very much so they switched me to Lyrica and Cymbalta. I hurt sometimes pretty bad, and after I wake up in the mornings, it's hard to walk cuz my ankles make cracking noises, but once I get going, I'm ok. I work 15 hours a week in 6th grade and love it.
I was diagnosed by UCLA after they ordered a 3-phase bone scan. My feet were suppose to look the same, but my left foot lit up like a Christmas tree, indicating RSD in my left leg, left ankle and foot.
I believe there are many, many pain management doctors out there who don't know how to treat RSD so they guess and that's just plain scary. My doctor told me this past week that he sees 6 NEW RSD patients a month. That's alot! I'm trying to figure out how to get a support group going here in the San Diego area.
Because I'm in San Diego, UCLA wanted me to get an MD here to order the 3-phase bone scan so I looked in the phonebook for "pain management" doctors. So, I went to one for the order, he looked at me and looked at my legs and said "I don't think you have RSD because you're not red and you're not blue." And, the hospital couldn't even read his writing on the order!! I felt like telling him that by the time we're blue or reddish, there's considerable damage. Needless to say, I NEVER went back.
I see my RSD doctor once a month now. In the beginning, it was very frequent. I was an emotional mess because I was scared to death and honestly terrified of being in a wheelchair due to this very serious disease that many don't know how to treat.
This site has many many people who are caring individuals. They are so kind, and they help when we panic, they are there when we feel like crying, and they can encourage us if we are down.
Take good care, and let us know how you're doing -
Deb

 
Old 12-05-2008, 08:15 AM   #4
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Re: RSD and Spinal Cord Stimulator

Thanks Karen and Deb-
I am already on meds--I can't tolerate high doses of anything though because I am only about 125 lbs. But, I am taking Lyrica 50mg BID, sometimes up to 75mg at night; lidoderm patches, 2 mg clonazepam at night, and 1/2 tablet Percocet prn--which usually ends up being about 2x/day. They are also trying Fosamax 10 mg QD and Vit. D+Calcium--my POR just got back from a conference out west, and that is something that came up for treatment possibilities for RSD. Along, with crushing 30mg Morphine and mixing it in 6 oz. cream and applying topically to the area--the mixture should last a while, so it isn't like you are getting the full systemic absorption at once. I have been to 2 pain specialists--the second one said he recommended 2-4 injections prior to a SCS. The one I am seeing, I thought that was the plan too. But, after my first injection, I f/u with his NP and she came in yesterday asking if I wanted the SCS. I thought it was way too soon too to try surgery. I asked to do another injection, and when I have that injection in a week, I'll talk with the pain doc and see if we can set up a 3rd injection the following week to try and get this under control before doing the SCS. He just told me when I first saw him that we need to be aggresive with my treatment because I am young--29. He said they have had tremendous success with the SCS. My POR said the same thing. I just hate to go through a surgery. I am so glad that I found this site. It's nice to know there are so many other people out there who care and are going through the same things.
This all started back in May when I fractured my foot/ankle in 4 places and had a lisfranc injury sustained at work! In July, when I switched from a podiatrist to an ortho/foot doctor, he immediately was looking for RSD because I had the initial signs, but no hypersensitivity. After determing that the cont'd pain I was having wasn't due to lisfranc instability, he diagnosed RSD. I have had it diagnosed by 5 different physicians, and confirmed by the block last week. Initially, all I could do was cry. I am a endoscopy nurse, and read about RSD on-line. I had never heard of it before. But, I could see my life changing forever. I love to run, and now just praying that I can continue to walk. But, I am now past that stage for the most part and am determined to get this turned around. I don't want this to spread, and I want as normal a life as possible. It's hard because my immediate family understands what is going on, but to try and explain to extended family or friends is like a nightmare. I feel like they think I am making this up. I'm not. I can't make my foot mottled, cold, hypersensitive, and so painful at times I can't walk. They don't understand that my nights are terrible sometimes--the clonazepam has helped with that though. They don't understand that this cold weather makes this 10x worse. But, I'm glad that I can find advice from other people going through the same thing. Thank you for your information. Hugs. Katie

Last edited by roge35; 12-05-2008 at 08:20 AM.

 
Old 12-05-2008, 10:33 PM   #5
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Re: RSD and Spinal Cord Stimulator

HI,
My pain management doc also talked about a spinal cord stimulator right away!! I was so surprised and somewhat scared because it sounded so final..she gave me an informational booklet and DVD all about it...she kept insisting that would be a solution to my pain and told me how a couple of her other patients had such good luck with it...she talked about it so casually, I thought it was something like a TENS unit..but after I read about it I had no idea it was so involved.
I think it would be something i would condsider as a very last resort..if everything else had failed, and if I were at my wits end...
Does the spinal cord Stimulator halt the RSD or can it put it into remission? Sometimes it feels like I already have one with all the weird sensations I feel in my foot !!!!!! I feel electrical currents in my foot and sensations like there is popcorn popping throught the foot!!! It's good to talk about this with others who were urged to try the SCS...
I had two sympathetic nerve blocks in August and now both of my docs are considering a third..It's getting harder for me to walk..
I am trying to take it as it comes rather than overwhelm myself with the unknown of the future. I did that when I was first diagnosed and it was so scary because I read everthing I could about RSD..I think I read too much too soon..I find out yesterday that I was authorized for 10 visits with a therapist who specializes in chronic pain and the emotional aspects..in fact she was a physcial therapist before she became a counseling therapist. I guess I have to admit to myself that I need the support because my life has changed so much, even my personality and identity have changed.. I've read so many inspiring posts by so many supportive, compassionate, knowledgeable friends, that I am so grateful to all of you.
It really is hard to explain RSD to friends and co-workers...but on this board, we are immediate understood...
Many, many hugs to all

 
Old 12-05-2008, 11:52 PM   #6
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Re: RSD and Spinal Cord Stimulator

Hi Roge, I have a SCS in place. I have had no problems except that it doesn't reach far enough down the leg to completely reach my feet. Even with that exception, the stimulation does help relieve the pain somewhat. I'm not sorry that I had it put in, although it wasn't a pleasant experience at the time. It was put in as a last resort.

Last edited by hotfeet; 12-05-2008 at 11:55 PM. Reason: spelling errors

 
Old 12-06-2008, 06:47 AM   #7
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Re: RSD and Spinal Cord Stimulator

Quote:
Originally Posted by hotfeet View Post
Hi Roge, I have a SCS in place. I have had no problems except that it doesn't reach far enough down the leg to completely reach my feet. Even with that exception, the stimulation does help relieve the pain somewhat. I'm not sorry that I had it put in, although it wasn't a pleasant experience at the time. It was put in as a last resort.
Hi Hotfeet-
What kind of SCS do you have? They want to place a Boston Scientific one in me, which is supposed to be the smallest and thinnest. It is a rechargable battery. I think after they do about 3 blocks, I will be looking at this. The docs are all pretty serious in needing to get this under control without spreading even more. They are all saying that a SCS has been shown to be the most effective with RSD. It just surprised me that they jumped to it so quickly. I'll be able to get more info after this next block in a week, and be able to actually talk with the doc and not the NP and get back on the same page. But, I'm so happy to hear that you have a SCS, that it helps, and that you don't regret getting one. I'm sure the surgery isn't pleasant, but with my SCS being small, my incisions should be 2 inches or less. We have already tried all of the normal meds--that is the whole problem. I can't be gorked out all day. I am a nurse and want to return to being a nurse. So, my best option if the blocks don't turn things around is the SCS. The NP did say that they do refer patients up to Cleveland clinic, but I'm afraid of the wait time to get in there. I have already had this a good 6+ months. It was a worker's comp case and all of my treatment has been denied up until last week. I went to a hearing and the HO added RSD on on the spot. My employer waived the 14 day appeal period, so I officially have RSD added on to my claim, which everyone is saying is the hardest thing to do. I had so much supporting evidence, it was ridiculous. It should never have gotten to that point. It took a lawyer to make them know I wasn't going to just drop this and let it go. Now, I can finally focus on getting treatment, and not having to fight to get treated! Thank you for your info. It gives me hope that the SCS isn't a bad way to go.

 
Old 12-06-2008, 01:53 PM   #8
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Re: RSD and Spinal Cord Stimulator

Hi Roge,

Isn't WC the pits? I never had a clue what it was all about until I hurt myself. I'm amazed that the companies can actually find people to work for them that can be so mean to sick people. Especially when someone's ability to walk is at stake! It's amazing that you were sick for so long with treatment being denied. Did it take 6 months just to get a hearing?

I am glad that you are finally getting the medical services that you need - the best of luck to you.

Sandy

 
Old 12-07-2008, 06:02 AM   #9
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Re: RSD and Spinal Cord Stimulator

Quote:
Originally Posted by Sandy325 View Post
Hi Roge,

Isn't WC the pits? I never had a clue what it was all about until I hurt myself. I'm amazed that the companies can actually find people to work for them that can be so mean to sick people. Especially when someone's ability to walk is at stake! It's amazing that you were sick for so long with treatment being denied. Did it take 6 months just to get a hearing?

I am glad that you are finally getting the medical services that you need - the best of luck to you.

Sandy
Sandy,
I have a very good friend who works for Workman's comp. I asked her one day why are they so bitter. She told me that everyday they get so many claims, where people just want to sue their workplace, or are just lazy and want make money but not. I asked her well then why are they still so difficult when they know that the person has a serious problem that will affect them for very long time or even life. She said that it's how they discourage people, people are already depressed and upset that they are in that condition, that *at least her company* the person will just get so upset dealing with them they will say screw it and go back to work. Kinda like trapping you into. Then you go back to work, and they can say you had been lying about pain. Sometimes even the workplace will put pressure on them, since they have to pay for all of your medical expenses. I'm just glad my best friend leaves her job at work. I think I lost a little respect for her, when she had told me that, but she's only a CSR so. I'm very sorry to everyone has such a problem when dealing with work mans comp, just stay calm do everything you are supposed to and don't let them get to you. That's most important please don't let them get to you. We know CRPS/RSD is a horrible, life long thing for us.

 
Old 12-07-2008, 07:08 AM   #10
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Re: RSD and Spinal Cord Stimulator

Quote:
Originally Posted by Reiannasmommy26 View Post
Sandy,
I have a very good friend who works for Workman's comp. I asked her one day why are they so bitter. She told me that everyday they get so many claims, where people just want to sue their workplace, or are just lazy and want make money but not. I asked her well then why are they still so difficult when they know that the person has a serious problem that will affect them for very long time or even life. She said that it's how they discourage people, people are already depressed and upset that they are in that condition, that *at least her company* the person will just get so upset dealing with them they will say screw it and go back to work. Kinda like trapping you into. Then you go back to work, and they can say you had been lying about pain. Sometimes even the workplace will put pressure on them, since they have to pay for all of your medical expenses. I'm just glad my best friend leaves her job at work. I think I lost a little respect for her, when she had told me that, but she's only a CSR so. I'm very sorry to everyone has such a problem when dealing with work mans comp, just stay calm do everything you are supposed to and don't let them get to you. That's most important please don't let them get to you. We know CRPS/RSD is a horrible, life long thing for us.
Hi Reiannasmommy and Sandy-
The problem with my situation was it was a work related accident. I fractured 4 bones in my left ankle and foot back in May. I found out 6 weeks later that I also had a serious injury called a lisfranc injury, when I switched doctors and went to the best ortho guy in Columbus. The S/S I initially presented with can mimic lisfranc instability. So, he was working on trying to rule out lisfranc instability starting in July. When I had my first severe RSD episode in mid July/early August, neither the POR or this ortho guy could see me. I ended up seeing his partner, who felt that I had gone into RSD, but didn't offer any treatment. My POR found out that they thought this was RSD, and put me on high-dose steroids for 12 days. Well, by the time I got in for f/u appts. with these two docs, the S/S cleared completely for the most part and neither one felt I had RSD at that time. So, my ortho guy cont'd to do testing to rule out lisfranc instability. When those tests came back negative, and I had my second severe flare of RSD a month later in Sept-Oct., that is when all physicians agreed that I had RSD. The ortho physician submitted a C-9 with the additional request for RSD, and I had to file a motion. Meaning that this went to a BWC doc for review to get the AA of RSD. But, it took almost a month for the review to go through BWC. And, the guy who reviewed it totally botched my review--he didn't review my chart and automatically denied it because he said the proper testing hadn't been done. IT had been done--he just didn't review it, or the symp. block that we were asking for they kept denying. So, it was a battle back and forth forever. It took 2 months to get a hearing date of Dec. 2. My employer wasn't even going to fight it, especially after they found out I had seeked the advice and gotten an attorney. I think they were hoping I would just drop it and not get it added on. But, I'm glad that I kept fighting. I went to hearing last week, the HO added RSD on to my claim on the spot because the evidence was so overwhelming. The risk management group assoc. with my employer didn't fight it. There is still a 14 day appeal period that any one can appeal the decision, and my attorney told me to expect this to be a 3-6 mo. process because there is some idiot sitting back at that desk making these life decisions just denying everything. However, I found out that my employer waived the appeal period the other day and RSD is officially added on to my claim!!
It is so frustrating to have something like RSD, and know what it is doing to you, and not be able to get treatment. They were even denying PT!!! Now, things should go much smoother. But, I wish this were under my ins., because things would move faster. However, my employer needs to pay for this and whatever happens to me in the future as a result of this. I want to get back to work, but they need to get this RSD under control first. Bottom line---YES----WC stinks!!!!!!
Thanks for your messages. Katie

 
Old 12-07-2008, 11:09 AM   #11
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Re: RSD and Spinal Cord Stimulator

I have my first IME tomorrow. I hardly slept last night, I'm nervous about seeing a doc who will likely be hostile to my case. Combine that with the horrific effects of the weather here in RI (it snowed a little)- the falling barometric pressure just wreaked havoc with my system - and I am really a mess today. Last night I was actually looking forward to a little snow...

Amazingly enough, the ortho doing the IME is a partner of the ortho who did both my shoulder surgeries (who was the one who referred me to PM in June for suspected RSD in the first place). I don't know if that is good or bad.

My PM doc has also diagnosed RSD. And my PT agrees. My old Ortho, PM doc and PT are all highly respected in the area. Maybe that will count for something?

I hope the rest of you have a wonderful day! Sandy

 
Old 12-07-2008, 05:35 PM   #12
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Re: RSD and Spinal Cord Stimulator

Sandy, Good Luck with your IME (whatever that is) tomorrow. I know what you mean about the weather wreaking havoc on your system, I too, have been in horrible pain. Try to relax, sounds like you have good doctors, and try to get a good nights sleep tonight. I will be thinking of you tomorrow as you go through this procedure. Remember that all of us are here for you. Jane

 
Old 12-07-2008, 06:01 PM   #13
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Re: RSD and Spinal Cord Stimulator

I had my SCS, an ANS (which is a St. Jude Medical Company), implanted in January 07. It has an external transmitter and an implanted battery. The surgery was quite lenghthy because the doctor was trying to implant 2 stims, one above the other, trying to reach a wider span, from lower back to tips of the toes. After trying for quite sometime, without success, they only implanted one. So my incision is a couple of inches longer. Before you get your permanent stim, you go through a trial period of about 4-5 days. During this trial period, you will know if it is for you or not. If it helps just a little bit, then I would say go for it, because after I got my permanent one, I was even more satisfied. Recovery is like most back surgeries, you have to be very careful about bending, twisting, raising your arms above your head etc.... You don't want to have the leads move, and undo everything. You will work with a person from the company, in my case, from ANS, to get the settings right for you. I have a few different settings for different areas of pain. You can control how much stimulation you need. You can turn it on and off, for times that you don't need it. I hope that I was able to answer any questions that you may have. The way that technology changes, in 2 years things may be different. Good Luck Jane

 
Old 12-08-2008, 06:59 PM   #14
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Re: RSD and Spinal Cord Stimulator

Thanks for the info, Jane. My SCS will be a Boston Scientific one--it's the newest, smallest, and can be controlled like a remote. It has a rechargable battery. It will be implanted in my hip/butt. And, then I'll have about a 2 inch incision in my lower back. I was wondering though are you limited in activity after the incisions are completely healed and the leads are held in place? ie Can you walk, run, swim with the device now? Or are you still limited with bending, lifting, etc. forever due to the risk of lead misplacement???? I am just wondering, because my job requires me to push patients on carts and if I am restricted I'll have to switch depts, which I don't want to have to do. But, I guess I'll do whatever gives me the best chance of getting this under control and have a more normal life and get off of all of these meds as much as possible. I'm scheduled for one more block on Monday, and I'll talk with the doc then to see what he feels we need to do. I hate f/u with a NP, when the NP isn't the one treating me. I need to get more questions answered by the pain specialist first before proceeding with the SCS. I can see why they want to move quickly to prevent this from spreading even further, but I don't see any harm in getting another block while I think about this.

Last edited by roge35; 12-08-2008 at 07:04 PM.

 
Old 12-08-2008, 11:20 PM   #15
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Re: RSD and Spinal Cord Stimulator

Hi Jane,
Just a quick question please. You explained your SCS so well. I've not had any blocks, and I don't have a SCS. I have RSD in my left leg, ankle and foot but I'm trying to manage with Lyrica, Cymbalta and an occasional Vicodin. Do most RSDers not need the meds after they get the SCS? I've gained 45+ pounds in the past year, but if it keeps me walking on my own, it's a very small price to pay. Do I like being "large"? No, but I'm able to work part time and manage things so I try hard to not get hung up about my weight. The idea of something being implanted into my body kinda scares me, but it sounds like it really worked out well for you. Can I ask you how bad your pain was before you did the SCS? Like on a scale of 1 to 10?
My date of diagnosis was September 20th, with the aide of a 3-phase bone scan from UCLA.
Have a good day tomorrow,
Deb

 
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