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Spinal Cord Stimulator
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jenn04 posted:
I am seriously considering getting a SCS for Fibromyalgia. I am scared about some of the comments that I have read. I need to talk to my psychiatrist next week. He may not recommend it.

But I am totally miserable and feeling quite desperate. I am in a Fibro support group online, and someone had it done. She feels great.

I am currently on disability due to the debilitating fatigue, memory loss, and pain. I know the SCS will only help some of my pain. Does it only help back pain or does it also help neck and shoulder pain?

The implant is permanent, but it can be turned off. That was my understanding. Am I correct?

I really want to get off narcotics. Right now I am only taking Lyrica and Cymbalta, and I can hardly function. I was on the fentanyl patch and oxycodone at one point, but the doctor weaned me off of them.

Even when I was on the narcotics, I would still get horrible flares. I was still in bed 2-3 days about every two months or so.

I don't want to make myself worse. But the thought of getting better makes me want to do it. Any advice?
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bj1208 responded:
Hi and welcome

What you should do is research the spinal cord stimulator implants - and also put in spinal cord stimulator implants problems. This will give you some ideas of what others have gone thru - you can weigh out the pro's and con's.

yes the system can be shut off. There is the trial period where they will insert a couple of leads in your back and the control box is worn outside attached to your pants or belt. There will be different dials to help different pains and/or you may not have pains and want it shut off for a couple of hours etc. There have been a lot of problems with the batteries so be sure to research that too.

there is always the need for breakthru pain meds so you need to ask numerous questions.

Another thought would be the pain pump implant as this will insert the pain meds directly at the pain site thereby avoiding prolong damage to liver and bladder.

There are lots of different treatment options available and seeing a good PHYSIATRIST Pain Specialist would be the route to go. They can examine you and let you know what the best treatment plan would be.

http://www.spineuniverse.com/treatments/what-physiatrist

please keep us posted what you find out and decide one~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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aprilrose9 responded:
Dear jenn04,

I have a SCS and it is not helpful, but my problem is completely different than yours. The one issue I will caution you about, is my trial was only minimally helpful, but the surgeon wanted me to try the implant. I had it done and it never really helped. I recently had the battery changed and I find having to recharge the darn thing is an issue for me. I actually liked the older model better and cannot believe they think this was an improvement. It was a total waste of money.

My words are not meant to discourage you. Just find out all the facts and get answers to your questions. I am just tired of hearing what sounds like a sales pitch and not getting a true picture. They cost a small fortune, but don't give you the DVD of how you need to recharge the thing until AFTER the surgery.

Prior to my SCS, I met a woman in the PM clinic who suffered from leg pain. She had great success with her implant and encouraged me to get one. They appear to help some people.

Bj recommended looking into a pump. I am not sure how disability works, so I was wondering if you tried the SCS and it did not work, if they would then pay for a pump. I would check into this issue. The problem with p.o. meds, is being metabolized in the liver and excreated via the kidneys, they cause issues for both organs.

If you check back, some people at this site have SCS and some have the pain pump. You may get some good info hearing from them.
 
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jenn04 replied to bj1208's response:
Joy,

Thank you so much for sharing your story. You are an amazing person, having survived that and then having the courage to share your story with others.

I am nervous about getting a pain pump. I really want to stop taking narcotics, but I don't think that is realistic. I tried to stop taking them, and I just could not function.

I was on a pain patch, and that did seem to help.

I think seeing a psychiatrist/pain specialist would be ideal, but there is only one doctor like that in my area. I have already seen him, and I regret it. He convinced me to have ECT. Looking back, I don't think it was the right choice. I have a lot of memory loss, and I still live with major depression.

He also insisted that I take Suboxone. It really did not help my pain, and my insurance would not cover it. I would have to pay 100% of the cost each month, and he was not willing to give me another medication. It was his way or nothing. So, I left.

When I saw a new psychiatrist, she was shocked at the dosage of one of my medications. She said it was way too high, and she immediately weaned me off of it. I started to feel better right away.

I might try to see if I can find a psychiatrist/pain specialist in a surrounding area. I live in the city, so I doubt it. But it is worth a try.

Thanks so much again!

Jenn
 
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jenn04 replied to aprilrose9's response:
April,

I am sorry that the SCS did not work for you. I have been doing some research on it, and you are not alone. I also consider the fact that I have had many surgeries.

Luckily, I am seeing a psychiatrist that I really like on Tuesday. I know he will be honest and sincere. He has always listened to me in the past, and when I first saw him I was a mess. He is one of the few doctors that I have seen who have been able to figure out all of my medications.

Getting a pain pump seems so scary to me, but I would appreciate any information about it.

Thanks!
Jenn
 
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trs1960 replied to jenn04's response:
I have had a pain pump for about 6 weeks now. It's not perfect, but I love not taking oral meds. We've been figuring out dose levels and I'm optimistic that this will be a great improvement for me.

If you have any specific questions about the pump fire away and I'll answer what I can.

Tim
 
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jenn04 replied to trs1960's response:
Hey Tim!

Thank you. I do not have any specific questions right now, but I am sure I will. It is something that I am going to talk to the doctor about. I am going to make an appt. after Thanksgiving.

Jenn
 
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aprilrose9 replied to jenn04's response:
Dear jenn04,

Tim, is our resident pain pump specialist. I am curious, but my insurance issues, make getting anything done very difficult...if not impossible.

Sounds like you are doing your homework. Let us know what you decide is best for you.

Glad you found a good psychiatrist. Finding someone who is in your corner makes a world of difference in our care. Tim has a physician who gave him his personal cell phone number. That is a first!

Take care,
April-Rose9
 
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charl1942 responded:
I apologize if someone mentioned this and I missed it, but I have had the trial SCS. It did not work for me, however many people have great success. I think Joy and others have given you some good advise, and especially about researching the information on SCS. This research will provide you a wealth of information.


I have recently been told by my current PM doctor that he wanted to look at the operative report done for the first trial implant. During my last office visit a week or so ago; he had the report. He said the leads were put too high in my spine, resulting in so much discomfort in my legs while I was trying to bring the low vibration to my hips and low back. I don't know whether we will give it another try yet.


If you don't understand my rambling, please feel free to ask what the heck I meant!
Charl


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