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Old 08-20-2007, 09:09 PM   #1
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erikkaberry HB User
I am getting a Spinal Cord Stimulator

Hi Everyone,

I hope this finds you in a less pain moment whatever time of the day it is. Aug 14 I had a Dr. appointment and my Dr. suggested we go ahead with the stimulator because I am not making much progress in therapy and my pain is still high. They wanted to do the surgery on Thursday but I had senior pictures and I would have had to come to the Dr's office to get blood work ect. (they want me to live as much a normal life as possible) and my Dr is going out of the country for a couple weeks and we would just feel safer if we waited until September to get it. We just have to wait and see when they scheduel it but I will let everyone know. I am a little nervous so anything about the surgery during and after woud help and anything else I need to know about the stimulator besides the research I have done on it.

Thanks,

Erikka

 
Old 08-21-2007, 05:12 AM   #2
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lostmary HB User
Re: I am getting a Spinal Cord Stimulator

Hi Hon
I don't have one, but yesterday my PM said we need to start going that route. I think you should listen to your doc and yourself. I will be interested in know how it goes. There are others here that have it, so they will be able to give you more info. Good luck, and take some awesome pics.
Mary

 
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Old 08-21-2007, 11:46 AM   #3
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jaxobean HB User
Re: I am getting a Spinal Cord Stimulator

Mary and Erikka,
Hello, Hi Mary I read your posts you poor thing. If you guys or anyone decides to get the stim. just please post your experience because they are relatively new and the best advice is going to come from the rsd community.
Everyone knows my experience so enough with that. Check with others that have gotten the stim and find out their stories. Fifteen Frenchmen can't be wrong!!! I hope you get the results you wish and deserve...
Hugs and Low Pain...Nikki

 
Old 08-21-2007, 04:12 PM   #4
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mixtinn HB User
Re: I am getting a Spinal Cord Stimulator

Hey Nikki,
How you doing stranger? How have you been feeling? I don't about the weather up there but here its been damp and rainy, add them together and you can imagine how I've been feeling lately..
Iam going for a liocaine infushion on the 17th of Sept.. I can't wait.. It helped me out so much before.. I am hoping it does the same so it can put me in remission...
Let me know how your feeling? I haven't heard or seen you post in a while...
Michelle

 
Old 08-21-2007, 07:22 PM   #5
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mcarr36 HB User
Re: I am getting a Spinal Cord Stimulator

The surgery is done in two parts. The trial implant is put in to test how much relief it you will get. You will be awake for at least part of the surgery. You will have to let the doctor know where you feel the stimulation. It was not too bad for me and I was put back under fast. You will go home with the leads hooked up to an external battery. It will be taped down and should not bother you. You will test it for a few days and then it will be removed. If you decide to go for the permanent implant you will have the leads implanted with a small incision. The wires will be tunneled to the battery (another incision). The SCS works really good for leg and arm pain. The placement of the battery will depend on where you pain is. The recovery was around 6-8 weeks for me. I had a cervical implant and I had to wear a neck brace the entire time. Please let me know if I can answer anymore question for you.
Mcarr

 
Old 08-21-2007, 07:36 PM   #6
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lostmary HB User
Re: I am getting a Spinal Cord Stimulator

Mcarr,

What were your restrictions for the 6 wks or so? My horses are on my property, and I clean the stalls and feed them. It is something that I love almost more than life. I'm afraid that I will not be able to take care of them. Hubby could do it for me by going into work late, but I have to know that I will be able to be with them without fear of something bad happening. I'm afraid of the stim. I've heard so many bad things about them, that I don't know if they really help or not. How long have you had yours? can you sit down and roll over in bed without a problem? How about wearing clothes? do the waistband of jeans sit near the battery? Are you still taking pain meds. I know...so many questions.

Michelle,
what is the liocane going to do? did you have to ask your doc for it, or did he suggest it? Is it used instead of the stim? Are you in the hospital for it, or do you get in on an outpatient basis?

thank
Mary

 
Old 08-21-2007, 07:54 PM   #7
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mcarr36 HB User
Re: I am getting a Spinal Cord Stimulator

Mary, you will need to really take it easy. If you don't you will have problems with the leads migrating and even if you are a super good patient, you might still have some migration issues. You have to restrict movement in order for the scar tissue to build up and secure the leads. Your husband will have to help you! You will need help getting out of bed for at least a week or so. The battery will peobably be lower than your belt line. More like the butt cheek area. I have several areas of pain and the stim. works for my arm pain. I does not cover my head pain or my shoulder. I do take pain meds and I have nerve blocks every couple of months. I am having revision surgery in a week to replace my leads. I will be out of work for 8 to 10 weeks. I have had the scs for a year. I would rather have it than not have it. I am happy to have any amount of relief. It will be hard for you to tell how effective the permanent implant is for a few weeks, due to swelling. But, you will remember how it felt during the surgery and that will ease your fear. What brand are you going to have?

 
Old 08-22-2007, 12:13 AM   #8
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jaxobean HB User
Re: I am getting a Spinal Cord Stimulator

Mary,
You do have an option of being out the entire surgery. I had one of the top ones in Mass. and he said it is optimal to be awake but you can be out the entire thing. I asked him straight out what do you suggest and he said out the whole time.
I was out and in my opinion and my docs. it is unnecessary and barbaric to be awake. They can use the x-rays from the trial and use them to put in the permanent. That is how I did both stims and it was fine.
I would never have gotten the surgery if I was awake. There is no need and I think more and more docs. are realizing it. It is your choice and you can be out. My opinion- out cold!!!
Nikki

 
Old 08-22-2007, 06:49 AM   #9
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shawley HB User
Re: I am getting a Spinal Cord Stimulator

My experience with the Trial and pemanent Implant :


My PM Dr. did my trial and it worked great ! I was sedated enough I didn't remember anything until I heard someone ask me where I felt the stimulation. They NEED to know exactly where you feel it the most , sure they can just look at your xray BUT it may not have the strong stimulation in the area where you need it. I found that out the hardway on the p-implant surgery , but I'll get to that. After they get the wire in place they knock should knock you out until they stitch you up .


I decided to go with my spine surgeon to do the P-implant because I thought he would be best at it. I was wheeled into the OR , given a small amount of anestesia I was awake for the whole thing...They did a Laminectomy in my spine up near my shoulder blades , then ran the paddle lead along my spinalcord down to my L5 nerve. This was horrible ! I felt every slice and felt them cutting bone off my spine...I was furious and told the Dr. to please give me something to knock me out . He said sorry we need you awake for this...Soon as he put the lead in a spot and ask if I felt it where it was needed , I said no its to high, he pulled the paddle lead down hitting my nerve that made me jump off the table ..He told me to hold still or he could do major damage. I told him I needed to be out for this but he said he couldn't. After the surgery and a night in the hospital , I went home and just layed around for a month. The stim only gave relief in my calf and no where else. You need to be awake and truthful while they place the lead. Thats why I didn't get the relief I should have the pain was so bad I just wanted it to be over.

Last week I had another lead put in. I told my surgeon I expected to be totally out for this until the lead placement. I also told him that the last surgery for this stim was rediculas that I should have not been awake for that. He promised me this time I will be so out of it I won't know nuttin . He was right. They did another lami and pulled my battery out of my cheek to hook up the lead and it was easy this time around.

I'm not trying to scare you , but make sure your getting the proper stimulation the first time so you don't need another one. Once the scar tissue forms around the lead you can do whatever . I wouldn't be lifting anything heavy for a long while...No poop scooping either .

My pain isn't completly gone , but it sure is alot less since the stim implant.
I'm sure not everyone's surgery is the same but this is how mine went.

Shawley

(PS.) Nikki - I don't mean to discredit your surgeon , but being totally out for your implant seems crazy unless your having multiple leads along the same nerve . My lead was placed on the right nerve , it was just a little to high and the stim wasn't reaching it properly. I think they were hoping they could cure my back pain and feet pain ??

 
Old 08-22-2007, 07:57 PM   #10
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LLS1948 HB User
Re: I am getting a Spinal Cord Stimulator

Hi everyone! I thought upon reading this post I would put my two cents worth in for whatever it's worth. I had my stimulator put in last year September and I couldn't be happier with it! As a matter of fact I am a good true success story with them and what they can accomplish! Next month I will be off all my meds!! Solely using the stim unit! It has changed my life but if I never took that step forward I would never know that! The trial was a little difficult because like everyone on here has said you have to be awake for it so they can tell where to place the leads. The actual surgery itself was not horrific but definetely not a walk in the park either. Truth be told it hurts!!!!!!!! I was awake for parts of mine. They would bring me somewhat out of the anesthesia when they needed me to contribute something like tell them if the leads were placed well and then put me back under again. The pain after the surgery is pretty intense! It's very hard getting up out of bed and yes I think someone on here said you will need help for several days just to get out of bed! I went back to work in a little less than a week though. I have a desk job as a receptionist so I sit and do nothing else but schedule and answer phones. I was okay to do that! The relief I get from this thing has been amazing and I would never have traded that decision for anything. I had to go back in in October because the battery pack started to migrate out again but after that it was all downhill and I haven't looked back! When I think of being off all my meds I'm so grateful I made this decision. BUT you do have to follow drs. orders and no lifting, turning, bending, and there is a lengthy list of dos and don'ts after this surgery! ALL WORTH IT for what I'm giving up! You have to do what's right for you but I would do it all over again in a heartbeat. I do want to say though too I don't think I would have wanted to be knocked out for the whole thing! I want to make darn sure before I leave that OR that thing in me is hitting the right area. I'm not going to go through all of that and find out they didn't get it right! Good luck in your decision and if you need any other questions answered, I'd be happy to help!

Lor

 
Old 08-22-2007, 09:56 PM   #11
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erikkaberry HB User
Re: I am getting a Spinal Cord Stimulator

Wow,

Thanks for the advice everyone. I am doing this from the advice of my Dr. but I also asked him since I am not making progress and i'm hypersenitive.

Is it true that you can't lift your arms above your ears?

For the people that the stimulator has helped, did it help your hyperseitivity?

My mom says that I "twist" during the night and from all of you I learnd it is a big No..No Does anyone know of anything that will help me not turn over during the night?


I feel a lot better about the surgery now that I might ... be out for a part of it. Hopefully I won't feel too much. I'm trying to have a positive look on it and if doesn't work I'll just go on to the next treatment. Unfortently with this disorder there is too much negive facts, outlooks, ect. so if we just try to think positve then maybe something positive will come out of this.

 
Old 08-23-2007, 05:14 AM   #12
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lostmary HB User
Re: I am getting a Spinal Cord Stimulator

Lor,

It's great to know that it worked. I'm so happy for you. What restrictions do you have now. Is there anything you can't do. (or shouldn't do). Could you go horseback riding if you wanted to? How do you get out of bed without twisting your body? Are you on pain meds during recovery? I can't believe you were back to work in a week. Did you drive? anything you can think of please let us know.
Mary

 
Old 08-23-2007, 05:23 PM   #13
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LLS1948 HB User
Re: I am getting a Spinal Cord Stimulator

Well, I'll try and answer as many of those questions as possible! As for my restrictions now I have a few. Like I can't do roller coasters or rides at amusement parks. Repetitive twisting or turning motion is what you need to stay away from. Repetitive being the key word there. The more stress you put on that lead wire to your spine the faster it could give out and need replacing. You really need to leave it really fuse to your spine and the device into it's little pocket they make for it inside your hip area or else you risk going back into surgery. I'm not sure for a long time I would go on a horseback ride. Probably now a year or even six months out I might try but only a steady slow walk. Nothing like trotting or running on the horse. Getting out of bed is a real issue at least for the first week. After that your body adapts and the device is meant to withstand some twisting like in your sleep. As for pain meds I was on them the same amount for at least 4-5 months and then ever so slowly gradually weaned off them! You don't want to send your body into withdrawal. It's important to take it slow and at your drs. advice in doing that. I have an awesome DR. in Cleveland that was a HUGE instrument in my success and recovery! I didn't drive for probably about the first week but then after that it wasn't much of a problem. Again you just have to make sure that your movements are slow and easy nothing jarring! If you are going to go through all that you want to make sure that you take care of what they put in. Knowing you can possibly get that much relief from it should surely put you in the frame of mind in doing all you can to make certain it stays put! Like I said earlier I think, I'd do it all again in a heartbeat just even to be off the drugs! If there's anything else you can think of let me know - I'm more than happy to help.

 
Old 08-23-2007, 06:20 PM   #14
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redeeminggrace HB User
Re: I am getting a Spinal Cord Stimulator

Eirkaberry,
And all others... Hi and I hope that you are enjoying a pain free day. I mean this in the most honest of ways. I have not posted in a while, by way pf introduction I have full body RSD-CRPS now for the las 5 years 5months. After 13 or so surgeries with 2 SCS implants I can tell you that the systems do not help everyone. They bring relief of some sort though. I have both cervical and lower lumbar (reaches my lower back down to my tow's). I do use meds and now have to see a Psycologist for cognitive pain relief. appeareantly the pain that gets worse after each surgery is all in my head... I pray that the relief you seek is there. You should be asleep during the proceedure then awakened to test the leads (very important for you). take the rest you will need it. God bless and I know you will make the right choice for you... Bernie

 
Old 08-24-2007, 09:47 PM   #15
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erikkaberry HB User
Re: I am getting a Spinal Cord Stimulator

LLS1948 - I'm not sure about the rules of the boards but my Dr is also in Cleveland. Can you put the Dr's initials's?

Did getting your stimulator help your hypersenitivity (if you had any, anyone can answer this and would be helpful).

So tonight was our high schools first football game (even though scool start next week) and I really wanted to go. So I had to make sure I had my meds, a sweater in case I got cold but we're haveing a heat wave and I had to get all this stuff that a normal teen wouldn't even think about. And during I was being run in to by little kids, adutes, and they didn't even say sorry. I was so mad. And the bleachers and vibrations. I could barely walk by the begining of half time. I really think this is the right decision for me.

Erikka

 
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