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    Old 12-09-2008, 09:07 AM   #16
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    Re: RSD and Spinal Cord Stimulator

    Roge, After you are healed, you can do anything that you feel you can do, no limitations.

     
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    Old 12-09-2008, 09:29 AM   #17
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    Re: RSD and Spinal Cord Stimulator

    Thanks for the info. That sounds great--I'm so happy to hear that you can do whatever you feel like doing and not have any limitations once you are healed from the surgery. Were you able to decrease the amount of meds that you were on once the SCS was placed?? Katie

     
    Old 12-09-2008, 09:31 AM   #18
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    Re: RSD and Spinal Cord Stimulator

    Deb, My SCS was placed because it was the last resort. Injections no longer worked. I develop scar tissue, and with each injection it created more. I have arachnoid adhesions where the scar tissue, nerves and blood vessels are all bundled up pressing against the spinal cord. There were days that the pain was so bad, that I begged to have the nerves severed, that I would be willing to be in a wheel chair if I wasn't in pain any more. The doctor said that I would still have pain. It seemed my pain levels never went below an 8. It was at this time that RSD was mentioned. I am on a lot of pain meds, even more now than before, but having the stim is a blessing for those really bad days. I too, like everyone else have gained a tremendous amount of weight, that on days that I have to go anywhere, I have a real hard time because of the way my clothes fit. I really miss being able to wear my pretty shoes. LOL

     
    Old 12-09-2008, 11:47 PM   #19
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    Re: RSD and Spinal Cord Stimulator

    Hotfeet,
    Oh my gosh -- I'm sooo sorry to hear that your pain was so very bad. I can't imagine, and I'm glad your SCS helps. With your SCS, is your pain level like a 5 or below? Ya know, my pain seems kinda weird -- I think that I'm just getting used to having it all the time. Did that happen to you? My nightimes lately are pretty tough. I went to the doc about a week ago, and he said I could increase my Lyrica but I'm so darn afraid of becoming even more heavy that I haven't increased it. This whole RSD journey is something none of us signed up for, and sometimes I have a hard time with it. It's no fun hurting when I walk. I used to walk 4-5 miles daily for exercise with my girlfriends and I miss that soooo much!!! And, my golden retriever LOVES walking, but these days my daughter takes her.
    Well, my writing isn't very cheery tonight - I work all day tomorrow so I best try and get some sleep.
    I got some info from the RSD association in the mail today. They've got a cute t-shirt that I'm going to buy -- Guess they want to make people aware. It's colorful and says "Take flight with hope".
    Okay, so you take good care, and thanks for sharing your story.
    Deb

     
    Old 12-11-2008, 12:36 AM   #20
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    Re: RSD and Spinal Cord Stimulator

    Hi... I didn't know about the RSD association. I guess I better check that out. My husband is denial that I have RSD. He just turns his head when I start talking about it. Maybe if he read more on it, he would come to reality. Don't get me wrong, he certainly understands that I am in a lot of pain, but the title... I just don't get it. He was ok with all of this when there wasn't a name. I was somewhat relieved when I could actually call "it" something. Sounds strange, but it did. Didn't make the pain go away, but it explained the symptoms that I have are real and not in my head. I think that he thinks that I am a hypochondriac. I'm rattling, should be writing this in journal, but it feels better to talk to others about my feelings.

    Deb, that did happen to me about getting use to the pain, and then all of a sudden it may be the same pain, or maybe it has increased, but it's like the straw that broke the camels back. I will hurt so bad and cry and moan and roll around in bed, feeling sorry for myself. The doctor also increased my Lyrica to 200 3 times a day,and that made it so the sensitivity wasn't as severe. I had/have a horrible time with swelling, which is one of the side effects. So I went back down and use the 200's when it gets to the point that I can't stand to wear pants. I think I need to increase it for a while because my fingertips are so very painful, like I have burned them on a hot burner. They put me on Lasix for the swelling, but it doesn't help. I will be going for a dopler and another test to check the blood flow to my legs and feet. It seems with each day, there is something more wrong with me. My neurologist told me that with the swelling it will be difficult to do the needed EMG, but after he gets the results from the Thorasic surgeon, he is going to do one on me, or least try.

    Boy, did this ever turn into something more than a quick reply. Thanks for listening. I better try to get some sleep. I'll check in tomorrow. Hope that you are feeling better. Jane

     
    Old 12-11-2008, 12:40 AM   #21
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    Re: RSD and Spinal Cord Stimulator

    Quote:
    Originally Posted by Sandy325 View Post
    Hi
    I joined the RSDSA also - the information they sent included some great pamphets that I gave my husband. Not only did we not sign up for this, but they didn't either.
    My IME (Independent Med Exam) went well -the doc approved of me going to Tufts in Boston for a 2nd opinion. But the paperwork needs to go thru, and my appt is tomorrow - it looks like I might have to reschedule, the WC insurance company hasn't processed a thing yet. Figures. Meanwhile we are in for a stormy week which is why I am up so early. My head kills if I try to lay down on it,

    Sandy
    Sandy, I'm glad that your IME went well. Good luck when you go to Tufts. This weather is sure is a killer on us. Hope that you feel better soon. Jane

     
    Old 12-11-2008, 05:10 PM   #22
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    Re: RSD and Spinal Cord Stimulator

    thanks Jane,

    My new PM doc would like to a SGB right away. But WC still hasn't approved anything. I had to use my own insurance for today's visit, and because I went out of network I am liable for 20%. WC stinks, I am just amazed that they would rather see us get sicker rather than approve things that are reasonable. But the doctor I found I really liked, and I will finally get some pain relief (even if is only for a few hours!!) I haven't been able to lie down on my head for a real long time...

    I sincerely hope that you have a peaceful night.

    Sandy

     
    Old 12-12-2008, 02:25 PM   #23
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    Re: RSD and Spinal Cord Stimulator

    Jane-
    I am having quite a difficult day. The weather is terribly cold, which isn't helping. But, I have conflicting information and don't know what to do. I saw the occ. med doc today, and she said that they need to be doing at least 3 blocks prior to a SCS, which I totally agree with. It was the NP at the PM office that wanted to do a SCS trial after just one block. I was against the trial and requested another block. They are going to do a symp. block on Monday, but BWC pended the request for add'l blocks which makes no sense because RSD is an allowed condition on my claim. Anyways, the Occ. med doc said that I need to go ahead with the block regardless because I have progression--from my foot up to about 2 inches below my knee; parts of my other foot too. But, I talked to her about what the NP was saying about the SCS, and the occ. med doc(who is very educated in RSD) said that she has rarely seen anyone get better with a SCS, and she has seen mostly that it makes things worse and causes progression of symptoms. I'm in agreeance about having 3-4 blocks prior to the SCS trial. But, what to do after that, I don't know. I run the risk of having it spread if I don't do the SCS. The NP at the PM office said they could send me to the Cleveland clinic if the SCS trial fails. I don't know what my other treatment options are besides the blocks and SCS. And, I can't wait around too long to figure out what route to go, because I am already having progression. And, to top things off, they cont'e to have me off of work until March 1. I told the occ. med doc that I have to be back by May 30, which is my 1 year date. My dept. can post my position after 1 year of unpaid leave, even with it being a work related injury. I refuse to let my boss get to do this--she is the main reason this happened in the first place. We were working so short--it would have happened to anyone that was in the spot I was in at the time. It just happened to be me. Initially, I asked myself, "Why me?" Then, I got over that and am determined to fight this and not let it get the best of me. Today is just an off day...there's so much to think about. I just want to do what will help me the most in the long run. I want my life back! Are there any other things you can suggest to try prior to a SCS??? Sorry for the long reply....it helps to get it out though when you're having a bad day. Thanks, Katie

     
    Old 12-12-2008, 03:32 PM   #24
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    Re: RSD and Spinal Cord Stimulator

    What about infusion therapy? Michelle (who used to post on this board often) reported that she achieved complete pain relief from Lidocaine infusions. She went to Schwartman at Drexel. I am almost certain she said she went for 3 separate treatments, others on this board might remember more details. Ketamine low dose infusions are also available but are supposedly more controversial. I was under the impression that they were only available at Drexel and South Florida Univ, but today I found out that some other medical centers offer them, too.

    What do you mean when you say that the RSD is an "allowed condition" under your WC claim? I'm also under WC but haven't heard that term used.

    A Dr. I saw in Boston yesterday wants me to get a SGB within a week. Don't see how that will happen...I'm also SOOOO tired of fighting the system. He also mentioned putting a catheter in my neck to deliver drugs right where they are needed, and then his 3rd suggestion was the SCS. But my lawyer hasn't contacted me and the Hartford already refused to pay for my consult let alone future treatments. And it's Friday so guess what??? Nothing's happening between now and Monday....

    What do you think the chances are that the WC companies catch the Christmas spirit and take a break from busting our chops? Wouldn't that be sweet?

    Sandy

     
    Old 12-12-2008, 08:15 PM   #25
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    Re: RSD and Spinal Cord Stimulator

    Hi Sandy-
    For worker's comp., when you are initially injured on the job they give you diagnosis code/codes for allowed conditions for doctors to treat you for. For example, for me, I had an anterior calcaneal, 2 navicular, and cuboid fractures of my left ankle/foot. The occ. med doc. gave me the initial diagnosis of left foot fx, left ankle fx, left foot sprain, left ankle sprain. These were the only conditions that were allowed to be treated under my worker's comp. claim. However, when I saw the ortho guy, he submitted a C-9 form and requested the additional allowances of the fractures; I had to file a motion with BWC in order for my work to either accept or deny these additional allowances/conditions for treatment, which they accepted because of the supporting doc. from my CT Scan. Then, came the Lisfranc injury. They added that on without any trouble because of supporting doc. from my ortho doctor. Then came the RSD over the past couple months. Initially, my ortho guy submitted it on a C-9 form for the additional diagnosis; I had to file a motion(agreeing to the diagnosis) to get it added on. However, when it went to BWC, RSD automatically goes to a physician review. A BWC doc reviewed my chart, or let's say really didn't review it,...and totally botched the review and denied the additional allowance of RSD. I appealed his decision and then BWC sent it to an industrial commission to be decided. It was at that hearing that the IC hearing officer, my attorney, and the risk management group with my work had to all present the information for a decision to be made as far as getting RSD added to my claim as an "allowed condition" for treatment. WC WILL NOT treat/allow anything that is not an allowed condition, especially RSD. They denied PT, the blocks, everything since October. I was forced to go through my private insurance because the RSD started to progress and I had to get a block for confirming diagnosis/therapeutic treatment. Luckily, my pain management doc accepts BWC and also my insurance. So, we proceeded with the block the week before my hearing. It only completely confirmed the RSD. There was no question at the hearing...the information was so overwhelmingly in my favor, the other side had absolutely no case. The hearing officer added RSD on as an allowed condition on the spot(which usu. never happens), and my employer waived the 14 day appeal period so that I could get treated. But, now I am still running into trouble with a CRR RN at Careworks reviewing the C-9 request for add'l blocks...they take as long as possible and then decide that it has to be sent to a MD for review, and that MD is out until Tuesday...how convienent? My block is scheduled for Monday, and I'll have to proceed with the block....the bills will get straightened out later. The whole thing is that RSD is now an allowed condition to my claim...there should be no reason why they are even questioning the blocks...it should be allowed as stated as standard treatment for RSD patients. That is what I don't get, and that is what my occ. med doc doesn't get. Careworks(MCO for my employer) has made this so difficult. I doubt you will hear anything by Monday---things take at least 1-2 weeks to get approved, and if yours has been denied up to this point, something isn't right. Is RSD an allowed condition? RSD is a very hard condition for WC to accept and add on. Mine actually was added on pretty easily because there was no question that the fractures/trauma resulted in the RSD. There was so much supporting documentation from all of the treating physicians, it was pretty hard for them to have a case against it. But, you have to fight for it. They put me through the ringer, and I think they thought that I would give up once the BWC doc denied it initially. But, that just gave me more ammo and I got an attorney who was very well known for BWC and RSD cases in Columbus. Usually, he told me it takes 3-6 months to get RSD added on to a claim, because you go to hearing, appeal, hearing, appeal, hearing, appeal forever because most employers don't want to have to pay for an employee that has RSD. It is a huge expense that they incur. But, it isn't fair to make patients wait as long as they do, and end up with progression just because they don't want to pay for it. We didn't ask for this at all! WC is the most frustrating healthcare system I have encountered!
    As far as the infusion therapy, I was reading about that this evening. I don't know if anyone in Ohio does that. A Lidocaine infusion seems pretty simple, and so less invasive. I'm a nurse, so I have a lot of medical knowledge....probably more than I really wish that I had at this point. I'll have to talk with my PM doc on Monday and see if he does that, or knows of anyone that does. Maybe the Cleveland clinic, but I can see that being a nightmare with WC. I hope you get your situation straightened out soon. Try to hang in there, and don't give up fighting. That is what they want you to do...don't give in. If there is any way you can get the block, go ahead with it. Like my attorney said, get the treatment now, and worry about the bills later. You need to get treated before it gets out of control. Take care. Katie

     
    Old 12-13-2008, 01:23 AM   #26
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    Re: RSD and Spinal Cord Stimulator

    Quote:
    Originally Posted by roge35 View Post
    Jane-
    I am having quite a difficult day. The weather is terribly cold, which isn't helping. But, I have conflicting information and don't know what to do. I saw the occ. med doc today, and she said that they need to be doing at least 3 blocks prior to a SCS, which I totally agree with. It was the NP at the PM office that wanted to do a SCS trial after just one block. I was against the trial and requested another block. They are going to do a symp. block on Monday, but BWC pended the request for add'l blocks which makes no sense because RSD is an allowed condition on my claim. Anyways, the Occ. med doc said that I need to go ahead with the block regardless because I have progression--from my foot up to about 2 inches below my knee; parts of my other foot too. But, I talked to her about what the NP was saying about the SCS, and the occ. med doc(who is very educated in RSD) said that she has rarely seen anyone get better with a SCS, and she has seen mostly that it makes things worse and causes progression of symptoms. I'm in agreeance about having 3-4 blocks prior to the SCS trial. But, what to do after that, I don't know. I run the risk of having it spread if I don't do the SCS. The NP at the PM office said they could send me to the Cleveland clinic if the SCS trial fails. I don't know what my other treatment options are besides the blocks and SCS. And, I can't wait around too long to figure out what route to go, because I am already having progression. And, to top things off, they cont'e to have me off of work until March 1. I told the occ. med doc that I have to be back by May 30, which is my 1 year date. My dept. can post my position after 1 year of unpaid leave, even with it being a work related injury. I refuse to let my boss get to do this--she is the main reason this happened in the first place. We were working so short--it would have happened to anyone that was in the spot I was in at the time. It just happened to be me. Initially, I asked myself, "Why me?" Then, I got over that and am determined to fight this and not let it get the best of me. Today is just an off day...there's so much to think about. I just want to do what will help me the most in the long run. I want my life back! Are there any other things you can suggest to try prior to a SCS??? Sorry for the long reply....it helps to get it out though when you're having a bad day. Thanks, Katie
    Katie, I hope that by the time you read this your pain has lessened. I am having a difficult time as well, that is why I am still up. I can't help you with your WC situation. I've never had to deal with it myself, thank God, but I know that my brother had problems and they had him jumping through all those hoops too. I can imagine the frustration you must feel. Just to let you know though, I don't mind listening and give advice when I "think" I know what I am talking about. I'm not positively sure of anything anymore. Well, I think that the extra pain medicine is kicking in, because I can't think at all, so I will end this here and catch you later. Take care... Jane

     
    Old 12-13-2008, 07:13 AM   #27
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    Re: RSD and Spinal Cord Stimulator

    Quote:
    Originally Posted by hotfeet View Post
    Katie, I hope that by the time you read this your pain has lessened. I am having a difficult time as well, that is why I am still up. I can't help you with your WC situation. I've never had to deal with it myself, thank God, but I know that my brother had problems and they had him jumping through all those hoops too. I can imagine the frustration you must feel. Just to let you know though, I don't mind listening and give advice when I "think" I know what I am talking about. I'm not positively sure of anything anymore. Well, I think that the extra pain medicine is kicking in, because I can't think at all, so I will end this here and catch you later. Take care... Jane
    Jane, I'm so sorry to hear you were having a terribile time as well yesterday/last night. I really hope that you are feeling better and are able to get some sleep. That is the worst thing is not getting sleep, it just continues the cycle. Have they tried Clonazepam for you? I was having terrible spasms in my foot and calf, and they started me on that at night. I am taking 2 mg, and I usually sleep really well. It is definitely a drugged sleep, but I'll take that over suffering through the night. That med has worked ever since I started taking it, and it continues to be the only one that really helps at least at night. I have to increase the dosage every once in a while because I build up a tolerance..ie initially I started at 0.5 mg. Just a thought to maybe help you get some sleep. I hope you are doing better today. Take care, Katie

     
    Old 12-13-2008, 04:15 PM   #28
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    Re: RSD and Spinal Cord Stimulator

    Hi, I was diagnosed with CRPS last year, I had the pain etc for about
    5 years previously. Anyway been to PMP which was really good as made lots of new friends. I am due to have a Phentolamine Infusion I havent been able to find much info about it on the net - probably looking in the wrong place. But I wondered if someone could tell me about it and if they had it done and if they think it is worth it. I have CRPS in my lower legs and both feet. Another question I have, I was told by my Doctor that CRPS only travels down and across but I am having the same burning and hot needle sensations in my right shoulder and in my fingers. I am getting so confused with this condition. I also have fribromyalgia and arthritis so at times I feel like screaming much the same as everyone else I guess. But if anyone could give me some info I would be really greatful. Thank you.

     
    Old 12-13-2008, 06:01 PM   #29
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    Re: RSD and Spinal Cord Stimulator

    Hi Joolz & welcome!!
    RSD can most certainly travel upward!! I started with RSD in my left knee and I now have it in my lower back and my hand. RSD can pretty much do whatever it wants.

    I have arthritis, too, and it's a killer in combination with RSD so I understand what you mean about screaming. You've come to the right place for answers and friends! There many knowledgeable, wonderful people here! I'm sure someone had some information about the infusions.
    Vicki

     
    Old 12-21-2008, 10:59 AM   #30
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    Re: RSD and Spinal Cord Stimulator

    Hi everyone. I have had RSD for 6months now. It came upon with no injury and suddenly. I have RSD in my entire right leg and foot as well as my lower back. I am seeing a PM who has given me 1 nerve block that worked though didnt explain/take away any of my pain. Then my PM decided to give me steroid injections via cathreter and have me go through agressive PT while my leg was numb, cause I wasent having any luck with the water PT or any of my meds. I now have the trial spinal stimulator and I am not seeing much improvement in my pain, and I am wondering what my next step should be. Anyone have any input? Anyone try alternative therapies? Making this decision is very emotional and complex.

     
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