HealingWell
Search Close Search
☰

HELP

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/28/2013 9:47 PM (GMT 0)
Yellow everybody I am new to this so bare with me please I have a severe case of complex regional pain syndrome. It's affected my left leg and its strangely spreading into my right leg of course all this came from a work injury that was a simple miniscus tear. My point is I am going in on Thursday for the surgery to start my neurostimulator trial,can anyone give a little advice to me I'm freaking out...
Posted 1/28/2013 10:50 PM (GMT 0)
i'm glad the dr is taking some aggressive action regarding your condition. it is important to try and prevent it from spreading. dont be too worried about the scs. it really wont hurt much to get the trial. if all goes well you will feel less pain. i so hope it works for you. how long have you been suffering?.....pal pete
Posted 1/28/2013 11:15 PM (GMT 0)
Hey Pete thanx for responding I initially got hurt two years ago but the surgery that triggered my case of crps happend about a year and nine months ago I went from a working family man to an almost divorced divorced single dad who cannot walk I'm hoping that this stimulator and reaching out to all you good people will help I'm not the kind of guy who ever asks for help but like my name I'm just tryn 2 live
Posted 1/28/2013 11:21 PM (GMT 0)
hi again tryn....i dont have crps but i do know a fair amount about it. i do know pain and my worst pain is the legs like you. i ride a power wheelchair because pain too bad to walk.
did the docs give you lots of injections to try and slow it down....pal pete
Posted 1/29/2013 12:46 AM (GMT 0)
Welcome tryn, I to suffer from Cp. I had a word related injury in 2006 , Still having issues almost 7 years later. I dropped a 50 lb wooded skid against my leg. Did not break or fracture it. But damage went from 1 end of the body to the other. Good luck with the pump. I ofton wondered If I should try it. What kind of meds have you been on?
I know my friend Pete knows about pain.
Posted 1/29/2013 1:00 AM (GMT 0)
Hi Tryn2live & welcome to the chronic pain forum. I am sorry to read that that you have this dreaded condition. We have several members here at Healing Well that are battling this disease. I am sure some of them will pop by later on.

Have you not talked to your dr about doing the trial for the stimulator? He is the one that is best qualified to answer your questions doing the trial. A lot of drs do things differently from other drs so it would be best to speak with him.

I do hope that you get relief with the stimulator. Those can be a real hit or miss, everyone is different. If nothing else, call and speak with the nurse at your drs office tomorrow & see if she can answer your questions.

Take care.....Susie
Posted 1/29/2013 3:25 AM (GMT 0)
Good luck, and hopefully good results for you

david
Posted 1/29/2013 1:24 PM (GMT 0)
Hello Tryin2 and welcome to HW. I too had a "simple meniscus tear" to the right knee in 98,also work related and never worked again! Nothings ever simple when it comes to pain is it? I went on to eventually have a total knee replacement about 5 years ago but its never stopped hurting,thats the left knee by the way not the injured knee. I have had 6 arthroscopies to the injured knee and now have an extreme chronic tear. Also was T-boned in my car a year after the replacement and it tore a chunk out of my nice new knee so it doesnt work as well as it did.

So I know all about those simple injuries and the pain they bring. I have now been a CPer for almost 12 years now,boy where did the time go,and I have to say that coming here was one of the best and most successful treatments I have had. This forum has some awesome folks on it and they know their stuff when it comes to pain issues and living life as we have to.

Hopefully we all can bring some measure of relief and compassion,knowledge and support to you and you can do the same for others.

Vickie
Posted 1/31/2013 6:02 AM (GMT 0)
Thank you to everybody who has welcomed me into the family I am Italian so obviously family is very important.i am going in tomorrow to start my neurostimulator trial if I can bring my pain levels down to a. 4-5 ill be satisfied with the process.for anybody considering a neurostimulator or SCS ill post my week for anyone who would like to know
Posted 1/31/2013 7:07 PM (GMT 0)
Hello Tryn & welcome to the Chronic Pain family here at Healing Well. As Susie had mentioned, we do have multiple members here also fighting CRPS and from what I've heard it sounds awful.. shakehead

I'm happy to hear you're getting the SCS trial though and I hope you do continue to post updates as we really do care! Plus, you never know how your story could help someone else out..

Good luck & hope to hear from you soon! yeah
Posted 2/1/2013 5:19 AM (GMT 0)
Just got home my surgery and they say every case is different mine took three hours in the o.r.and since I live in Southern California it was a 3 hour sit in traffic to go 65 miles but that's a whole other set of issues.im tryn to adjust to wires coming out of my spine but hey it could be a lot worse the feeling that I can describe is at Christmas time when your sitting in the mide of the room wrapping presants and your leg gets that numb tingling sensation that's it but the only difference is I can control the intensity.looking forward to a little relief.
Posted 2/1/2013 6:08 AM (GMT 0)
Keeping my fingers crossed for you.

Vickie
Posted 2/1/2013 1:15 PM (GMT 0)
Hello,
I'm new to the site also. I wanted to say that I hope your stimulator works well for you. I have one stimulator implanted for intercostal nerve damage and then another separate unit implanted for back and leg pain. They work great for me. I still have to take pain meds but I have a much better quality of life. I wanted to say good luck with everything and I hope it works well for you.
Posted 2/2/2013 6:15 PM (GMT 0)
Officially day two with the trial and I too am noticing I still need to take pain meds but mainly at the end of the day and since I constantly toss and turn in bed I turn the stimulator off but it seems to relieve the pain in my rt hip which not only has c.r.p.s but joint degeneration also I haven't seen a lotta of relief in my left leg yet, that's the worst affected leg but time will tell and I still have a positive outlook thanx everybody
Posted 2/2/2013 9:56 PM (GMT 0)
The good thing about the permanant unit is there is alot more flexibility in programming. Not sure what brand you are trying, but with my permanent unit they can pinpoint specific areas. Each area can be turned up individually to make a program. A program could consist of left leg, right hip and lower back, each one at a different intensity and pulse width. The trial version is very basic, just to give you a general idea of what it will feel like. You would hate to go thru the full procedure only to hate the sensation and not use the device.

I got my permanent unit in July and have yet to decrease meds unfortunetely. It has made me alot more stable when it comes to mobility. I am having an issue with my unit right now, but we are working on figuring it out. Like any piece of electronics it can malfunction.

Good luck with your trial!
Posted 2/2/2013 10:12 PM (GMT 0)
Thanx for the info shell77, it would be nice to not have to use pain meds my ideal concept for all this is to get off the beutrans patches and neurontin and use my stim. And iff it gets to paid use norco but that's in a perfect world and although I'm young and new to this I'm finding out its harder than it seems
Posted 2/3/2013 10:49 PM (GMT 0)
Hi Tryn, and welcome. I'm so sorry I missed your original post. I've had CRPS since 1999 - mine was the result of surgery for a synovial injury and made much worse by a meniscus tear and further surgery six years later (I wasn't diagnosed until after that second surgery). I'm sorry too that yours has spread - sadly this is something that can happen, that doctors struggle to explain. Mine spread first from my right to left leg, then my back, both hands and arms, and I now have severe problems with my GI system, heart/blood pressure, immune system and stuff as well :(

How many leads do you have on your trial SCS? If you only have one but feel you are having spread to your other leg, I would definitely ask your doctor about placing a second lead if it turns out you have a successful trial and opt for the permanent unit. At the time I had my first stim implanted my CRPS was only in my right leg and my doctor at the time only implanted a single lead...and the unit he chose could only accommodate a single lead. This meant that two years later when my CRPS had spread and my new doctor suggested a second lead, he had to replace my SCS unit at well - so a much bigger surgery and harder recovery.

Shell has given you a good description of how the permanent unit works - Shell, can't remember what brand you have? - but mine works the same way... My preferred program at present lets me target four different areas, each at different intensities. It does 'tingle' but when it's working well feels a bit like a rolling massage. That said, I still need a lot of oral nerve and regular pain meds - and I also have a pump with baclofen and a small amount of morphine to manage my dystonia and spasms.

Best wishes with your trial.

Laura
✚ New Topic ✚ Reply