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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-22-2010, 07:28 PM   #1
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amandalilly7 HB User
Unhappy Trial of the SCS?!?! help!!!

So after having both a bone scan test done as well as a nerve test and an EKG, i have most definitly been diagnosed with RSD. Not that the docotors thought that i didn't but the new PM doctor i started seeing wanted a definitive diagnoses not only for his sake but it makes my case stronger for disability. The bone scan came up completely normal, but the nerve test and the EKG did not. lol my nerves are completely out of wack.I was told by the neurologist that most RSD patients actually don't show as much of a result with the nerve test like i did. So then came discussing my options. The PM doctor put me on a higher dose of percocet (30mg four times a day) and a fentnol patch (25mcs every hour for 72hrs). He then highly suggested that i try the Spinal cord stimulator. After much thought into his suggestion and trying to do some research on my own, i think that i am going to do the week trial of it. Which means that i have two wires put into my body, through what is kind of like an epidural, they put a big bandaid, over my back and im not allowed to do many things for 7 days which include not showering, bending lifting and so on. so after 7 days of being able to control the impulses i can decide if id like the permanent one put in or not. any thoughts? does any one else have the SCS . Or has any one done the trial of it? Im really nervous and am not 100% on this whole decision, but id really try anything at this point to feel the slightest bit better or have even a little bit of pain relief! HELP!! lol

 
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Old 04-22-2010, 09:47 PM   #2
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tatted HB User
Re: Trial of the SCS?!?! help!!!

hi, ive done the scs,. ive had rsd for over 4 years now. a few things u should know.
a scs. is nothing more than an internal tenns unit (that magic box at pt they hook u too with pads and gentaly zap u with electricy. dont worrie if u havent had that done yet it dosnt hurt feels good sometimes acutly. now as far as how meany *cords* there going to put in u, well thats diffrent for ever one, those cords are called leads. its up to the doc whos duing the placement (of the scs) to decied how meany is needed. now what the wepages fair oten to tell you is that ,when u are haveing the scs placed inside you, you are keept awake, u have to be becuse thats how they determan how meany leads u need and what r the best placements, dont worrie it dosnt hurt, u feel some slight presure, now the pressuer dose hurt but u got rsd so its not gonna be as bad pain as what ur used to dealing with. while your awake he will trun on the scs and u will feel a numb tingly sensation, and u and your doc will decied what and were feels the best and helps the best as far as placement gose. also other thing you should know is there are 3 diffrent type of scs units. the 3 diffrent types have to do with how the scs unit itself charges, programs , and also if its internal or external unit itslef. deffently talk to the doc about it, becuse theres a ton of info your gonna want before u do it, so that you know what kind of scs unit u want and what will be the easyest one for you to controll and recharge and all that fun stuff. i hope this helps, if theres anything u haev quesiton about this just ask ill try to help as best i can, i had mine taken out after the trial cause it didnt do a dammed thing, butttttt, im special rsd case one of the 5%ers as they call it. a few people that ive spoken with who have scs said they get a lot of relife from it but not enough to be able to go back to work, but enough to dramaicaly impove quality of there life. i hope this helps

 
Old 04-23-2010, 05:46 PM   #3
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sharon1030 HB User
Smile Re: Trial of the SCS?!?! help!!!

Hi,

I did the trial for the SCS about 10 years ago, but it didn't work for me. The trial wasn't bad at all and it's a good way to find out if there's any chance that the permanent one will help. I've heard/read some people say that the permanent one didn't help as much as the trial so know that. Good luck if you decide to go for the trial.

Sharon

 
Old 04-27-2010, 07:00 AM   #4
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chilimaiden HB User
Re: Trial of the SCS?!?! help!!!

I am confused how this message board works, not like others I guess. I feel your pain. I would just like to be able to sleep at night without pain...and not waking because of this stupid pain. I am seriously depressed, and it sounds like you are at your end point too...

I was seeing a dr for pain management here...but my work comp dr...does not want me to see him anymore. I am waiting to get approval for a second opinion. Where do you live? I am in CA and am thinking about possibly trying medicinal mar. in the evening. I have discussed this with many people...and they think it is a good idea. I do want to speak with the dr about this. The second opinion dr I want to see specializes in this RSD, or CRPSwhichever you want to call it...at UCLA. I am not sure either how I feel about this SCS...but if I can have some of my life back...it would be nice!

< edited >

I think the test run even sounds scary, but this is my opinion...and only 1...

I don't know anything????

take care,
Mindy

Last edited by hb-mod; 04-27-2010 at 08:46 AM. Reason: Please don't post personal info such as real name, email or phone.

 
Old 04-30-2010, 06:31 PM   #5
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harmony85 HB User
Re: Trial of the SCS?!?! help!!!

Amanda,

I'm so sorry that you are going through this. I do agree with sharon about how sometimes the trial works better than the actual system. It can help some people and give back some of your mobility but everyone is different in the way it works.
I have a good friend that does have the scs. She got the perm. in about a year ago and has loved it. She is still in pain and sometimes still has flare ups that cause her to not be able to do anything but she is better with it. One thing to keep in mind is that some times surgeries can flare up the rsd,make it travel because of the stress that is put on your body and it isn't a cure. Even though my friend is doing way better her rsd has still effected her in many ways and has still been traveling too. Thats why I say that it isn't a cure and you have to make sure that you really want to go through with it and be able to deal with the emotional side of things if it doesn't work for you or cause other problems.
I truly hope that if you do the trial that it will help you and you will be able to get some well needed pain relief and emotional relief that we all go through being in this much pain. Just make sure that you are the one making the decision for your health and well being. This is your life so you need to have a final say in everything that you do to try and control your rsd.
I hope that I have been of some help,please don't hesitate to come on here and ask more questions or just vent if you need to. We all have at one point or another and it helps to fight when you are emotionally strong and some times the only way to do that is to talk or cry it out.
Good luck with whatever you decide and keep us posted on how things are going for you.
Take care and stay warm,
Deanne

 
Old 04-30-2010, 07:55 PM   #6
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amandalilly7 HB User
Re: Trial of the SCS?!?! help!!!

Quote:
Originally Posted by chilimaiden View Post
I am confused how this message board works, not like others I guess. I feel your pain. I would just like to be able to sleep at night without pain...and not waking because of this stupid pain. I am seriously depressed, and it sounds like you are at your end point too...

I was seeing a dr for pain management here...but my work comp dr...does not want me to see him anymore. I am waiting to get approval for a second opinion. Where do you live? I am in CA and am thinking about possibly trying medicinal mar. in the evening. I have discussed this with many people...and they think it is a good idea. I do want to speak with the dr about this. The second opinion dr I want to see specializes in this RSD, or CRPSwhichever you want to call it...at UCLA. I am not sure either how I feel about this SCS...but if I can have some of my life back...it would be nice!

< edited >

I think the test run even sounds scary, but this is my opinion...and only 1...

I don't know anything????

take care,
Mindy

MINDY~~
Hey! i am still having lots of trouble figureing out how to reply and use this forum! lol anyways, i currently live in WI. I am seeing a great pain management guy here. one that knows as much as there really is to know about RSD. The depression somedays is bad. I have a two year old daughter and a 5 year old step son. they are my world but it hurts so much to not be able to run around and do things like i used to. Dont get me wrong i play with them and do homework and go to school concerts and basically everything i can but its not all i used to do and that sucks so bad. i cant even provide for them fiancially. it blows thats for sure. The SCS is scarier than all hell. but im at a point where illtry anything. i currently have fentonal patches and 30mg perks but they make me feel so weird i hate taking it. I wish that medical mar. was available around here. i honestly would do it!! im pretty sure theres a way on here we can talk just us back and forth if u want lol we just have to figure it out! anything u wana talk about or vent about im here to listen! i dont have much advice but ive tried alot of different things so maybe i could offer suggestions or advice... Talk to You soon! take care!~~Amanda

 
Old 05-26-2010, 06:43 PM   #7
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Scrufysdad HB User
Re: Trial of the SCS?!?! help!!!

Having a SCS whether trial or perm is a big step for anyone with RSD. I was injured 5 years ago and underwent the trial scs which was probably my best week. I was able to get rest within that trial period. As you stated you can't do ANYTHING.......No twisting, lifting, carrying, bending, showering etc etc. Even going to the bathroom was a chore....hope you understand without getting too graphic. All I can say is thank god for a wife who understands, loves me and is sympathetic to my needs. I found the temp to be very helpful, but after having the SCS it immediately aggrevated the nerves making the RSD go up my leg. Your doc should have given you the odds that the perm unit could work for a day, months or year, but don't bet on the unit being a sure thing. For me after 4 years of dealing with it was very apparent that it just didnt work for me. Of course, given the option to add more leads just didn't seem like the right thing to do. What would have happen if adding more leads made the RSD mad and spread even more up to my hip or even middle body. I don't think I could handle it. Now my RSD is spreading some more.....not sure as my PM doc doesn't listen to my concerns. Think wisely, ask questions about the success rate for the unit and how long it should last. Also, remember that you will hvae to have the battery changed every 8 years. So surgical procedures will be in your future. Be careful cause most everyone who ends up with the SCS wants it out eventually due to some problem or malfunction.

 
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