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Neurostimulation Therapy for cronic pain of Left foot

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Posted 6/12/2012 3:31 PM (GMT 0)
Hello everyone,   I am in the Navy and had a very heavy part fall on my left foot which started my RSD problems. I am looking to see if anyone has had a neurostimulation device implanted to help control RSD. I have it in my left foot. At the height of my pain I will feel in shoot up my foot into my jaw. This pain restricts my daily activities as well as my social life. I have been receiving LSB shots to try and relieve some of the pain. They have helped somewhat but they are begining to not help at all. My doc suggested this neurostimulation therapy and I am looking for some success. I am really thinking about getting this procedure done because I am kind of at my whit’s end with this. I have a small child and I am unable to play with her the way I used to or even go grocery shopping without having massive pain. I really hope this could be an option for me. I will get the trial in a few weeks. Could someone please advice on their experiences? Thank you.
Posted 6/12/2012 7:10 PM (GMT 0)
Hello L Foot! and "Welcome" to the CP forum! wink

Ouch! …that sounds very painful! shakehead I do not suffer from either conditions you mention here, but did want to explain in case your Dr has not yet,…. that the SCS should be done on a trial bases, and if at that time you receive at least a 50 percent reduction in pain, then you have the option to continue with the permanent implant.

We do have a member here that has both of what you describe….the SCS unit and the RSD. I will try to contact her, and see if she can take a peek at this post. She lives clear on the other side of the world from us here in the USA…so she may be asleep at this time….I can never figure out when she is sleeping….and to tell you the truth, I don't think she gets much sleep rolleyes…as she suffers something horribly.

Good luck, and again Welcome!

SEwink
Posted 6/12/2012 7:22 PM (GMT 0)
Hi LFoot and welcome to the chronic pain forum. I am sorry to read that you have RSD in your left foot, that is one disease I would not wish on my very worst enemy. You are asking about the SCS unit and all I can tell you from what I have seen here, there has been more failures than success stories. You really need to do your homework before considering one of these units. Its a very personal decision no doubt.

The units do not take your pain away, instead its suppose to create a sensation that over rides the pain. You will also not be medication free just because you have a unit, people still need pain meds even with a unit. If a dr tells you any different then I would as fast as I could from that office.

You may want to use our search feature here at the forum and type in SCS units. There is a lot of information that you may want to read about. Is your drs office trying to get an ok with your insurance company to do a trial? They claim that if your pain is reduced by 50% during the trial then it is considered a success.

One thing we understand here is the desire to have our pain levels decreased. Anyway, I wanted to pop on and tell you hello and welcome aboard. Take care.....Susie
Posted 6/12/2012 7:41 PM (GMT 0)
hi left foot

i wanted to welcome you aboard our chronic pain forum. Glad you found us but sorry you are suffering so much.

How long has it been since you were injured? did you find out you had RSD at the time of the injury?

One of our members suffers from complete body RSD or CRPS and she also has a stim and a pain pump. Hopefully she will be by soon to help you out.

So sorry to hear you can't carry on a normal life with your child, etc. We all suffer from chronic pain in one way or another so we really do understand and support you completely.

Keep posting with us and let us know how you are doing.

Suzane

Posted 6/12/2012 7:41 PM (GMT 0)
I am Active suty Navy and will have the test unit put in at the Naval Hospital. The doc did tell me that it will not take the pain away totally but might give me some relief so that I can get some of my life back. I would just like to be able to go to the store with out feeling like I want to chew off my own leg to stop the pain by the end. The LSB shots worked a lot when I first started them but now they only last a few days. I dont want to have to take Narcotics every day. I currently take tramadol when I am in a lot of pain and only one a day if I have to take it. I guess I need to wait and see how the trial works out. This form is however giving me good questions to ask the doc when I see him next week.
Posted 6/12/2012 7:49 PM (GMT 0)
Good luck with your stim and please do post back so we know how you are doing.


take care
suzane
Posted 6/12/2012 8:05 PM (GMT 0)
Hello Again L-Foot!

…as you can well see your not alone suffering from CP, and to tell you the truth, almost no one understands it unless your suffering from it. Also, your not alone in not wanting to take narcotic pain med's for relief. Do what you can first with the non-narcotic med's, but you may at some time in your life have to choose the lessor of two evils. If that be the case, if and when,….be-careful and try to stay on the lowest dose. The trick is to stay on the lowest dose and try to maintain some sort of quality of life. Not easily done!

It was good to meet you, and again good luck!

SE wink
Posted 6/12/2012 9:01 PM (GMT 0)
Hello there L Foot - and thanks SE for giving me the heads up :)

I've had CRPS/RSD for 13 years so I really feel for you with this diagnosis - epecially with you having your young daughter.

SCS can certainly can be a very useful part of pain management with CRPS, but as the others have said to you - and as it seems your doctor has told you - its main purpose is in modifying the pain by creating a different sensation - for me it's like a gentle, rolling pins and needles. It does have some pain blocking ability due to the way it acts on the neurons in the spinal cord, but I'd never suggest anyone go into it thinking they will get total pain relief. It does have its problems too - mine helps me a lot when it works, but I've had several revision surgeries and still having problems with it.

There are a lot of other steps to consider before considering the SCS. What other medications have they tried you on? Some might include Lyrica, Neurontin, Cymbalta? Have they got you doing any physiotherapy? Has anyone mentioned Graded Motor Imagery or Mirror Therapy? I'll try to look out the links I have and share with you.

If you have any questions AT ALL, please just ask. I'm not around the forum much as the moment, but you can always email me using the tab under my mae

Laura
Posted 6/12/2012 10:23 PM (GMT 0)
L-Foot…I wanted to pop back in and offer a little more information that you may not be aware of. I believe the Trial of the SCS uses different leads, and the permanent one uses paddles. This has made a difference for some patients, that while they had success with the trial, they soon experienced problems because of the paddles. I could be wrong, but I believe the paddles offered a better way for Surgeons to tether the leads, but that placement could be difficult depending on where they needed to be placed, thus the patient not getting the same relief as was experienced during the trial.

Make sure you ask your surgeon about the difference between the trail leads and the permanent one's. LOL…I'm not sure if it is spelled Leads or Leeds! I assure you I'm the worst speller around here! rolleyes

Also, in all fairness to you,…please know that this forum is for Chronic Pain patients, so it is not often that patients come here and report success stories on much of anything, whether it's back surgery or whatever. We all were suffering from CP when we found this forum and were looking for answers and suggestions like yourself. I'm a little like Straydog, but you have to understand we have seen member after member complain about this device. I will say that I met a local CP patient here the other day, and she swears by it! I asked her several times.."are you really happy with it?"…and she assured me that she could not live without it.

If you don't mind me asking, just where exactly do they place this SCS unit with an injury like yourself? Will the leads be placed in and near the foot? and the device itself placed under the skin of the leg? …or the buttock?

Another thing to consider, is that if your devise causes problems, and can no longer be adjusted to an adequate level of relief, and you want it removed…..it is most likely they will not remove it. I do not recall the reason as to why…but Im sure one of the members here can answer this. Please ask all the questions like this of your surgeon before you proceed with it.

Take care,

SEwink
Posted 6/13/2012 10:04 AM (GMT 0)
SE - It depends on the doctor. Neither of the doctors I've dealt with for my SCS use paddle leads - with the exception of the very small paddle that works like a larger version of the percutaneous lead. And no - the leads are placed in the back - over the area of the spine where the nerves exit that supply the foot and lower leg. The device is either placed under the skin of the abdomen or buttock. Mine's on my left abdo (pump's on my right) and I think my leads run between about T11 and L4

My first doctor believed that the best way to do a trial was using permanent percutaneous leads. This means a slightly more invasive surgical procedure for the trial (and a second surgical procedure rather than quick removal of leads in his rooms if a trial is unsuccessful) - but also means that trial and permanent results are the same...because the leads are not touched at all other than connecting them to the SCS battery.

I'm on a CRPS forum and a couple of CRPS facebook groups as well - and though there are still some people for whom it hasn't worked - there is a much greater percentage of people who've had good outcomes with it than we seem to see through this forum here. I'm of the opinion that some of the reasons why many people find they "don't work" after permanent implant are that doctors push patients into having them done - or create unrealistic expectations, that the lead position is slightly different (just a couple of mm difference in position can cause a HUGE difference in stimulation pattern!) and/or that people have unrealistic expectations and kid themselves that the trial is more effective than it really is. My doctor told me that I needed 70% pain relief for it to be considered a success. I had almost no relief from the deep, icy bone pain - but almost total relief from the allodynia and hypersensitivity.

Laura
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