Hello all, I am new to this forum but really appreciate that there is a community of people to talk to about RSD. I can tell you this is a very lonely disease. My poor wife got this disease in 2010 after being rear-ended by a car while stopped. (I was in front of her) and she was hit so hard she ran into my car. Anyhow..
It's been a long road in a short time. Multiple nerve-blocks. First one worked for a month or maybe 3 weeks. Second did nothing. Off to a larger facility who specialized in this and tried a few more things ultimately ended up with a SCS. The SCS was a godsend for the first 8 or so months. But as time went on, her power requirements increased which meant charging daily to now almost 2x a day. She still gets some relief but, well let me put it this way, if this was the relief she got day 1, the SCS wouldn't have been worth it. She is also on multiple opiates. Methadone and Oxycodone. She is on a low dose of those as she was trying to get off of them when the SCS was more effective. That plan has been shot now.

Back to my question. I've been reading up on pain pumps and most of what I read from people who have them have said they are a life saver. So was the SCS :-/ I'm curious for the pain pump patients who have had them longer than 1 or 2 years how they are working out now. Have they been stable with them, I imagine you still have flare ups, but overall has things been ok?

Secondly I am wondering what life is live on a pain pump vs an SCS. I can tell you with an SCS don't read the marketing materials. My wifes leads go up to her neck. She moves it too much, she gets shocked. She can't look up. She can't pick up our son who is 4, she has to drive with it off which she can only tolerate for about 10-15 mins. She has had multiple episodes where the leads have moved slightly enough to cause loss of muscle control causing her to ... flap like a fish out of water. Luckily I caught her before she fell. I don't mean to discourage SCS here btw, it really gave her 8 months of her life back. Unfortunately we may need to look at new options now. I'll try to summarize my questions below since I realize I've been writing this w/out any structure

1. For long term pain pump users, is it still working for you? Are you happy with it? Has the effectiveness wore down or did you just adjust meds?

2. What limitations do you have when on a pain pump as perhaps compared to an SCS. Or even in general.

3. Is the medtronic (or any brand) pain pump completely internal? Is there any external piece to it for normal daily living, does it need to be charged like the SCS does?

4. Have you had complications during your time with your pain pump?

5. My wife has RSD in her left arm, and seems to be spreading to her right. Her leads go up to her neck now for her SCS. Will they have to put the catheter in her neck as well (this scares the hell out of me). Or can they put it in her lower / lumbar region. I'm very interested in pain pump experience where it was put into the cervical area and what life is like for that and restrictions you have.

Thanks for taking the time to read this and answering my questions. I'd be happy to answer any I can about the SCS from the perspective of being with someone who has it.
- Steve

Welcome to NT - So glad you found us!

Thank you for sharing your wife's experience with the SCS. I'm sorry to hear that it lost it's effectiveness. I'm wondering if this might have anything to do with her RSD spreading?
You hit the nail on the head when you said that this is a lonely disease.... VERY much so! I'm so glad she has you standing by her side and seeking information.

You are asking some very valid questions about the pain pump and I'm hoping this will prove to be something that can help get her quality of life back if you pursue this.
We've had several people inquiring about the pump lately. I'll track down some testimonies of long-term recipients and post the links here. Thing is, they seem to fall out of sight and it's hard to continue getting feedback from them. I'm assuming (hoping) that this is because they are happy with their pumps and feel no need to be on a pain forum anymore.

I'll post those links soon. For now I just wanted to say that it's great having you hear and we'll do anything we can to be of help.

Caring,
Rae

Ok, here's the most recent visitor who shared their experience. It sounds very encouraging. I hope this person will stick around to answer more questions.

Name is 'FillerUp' http://neurotalk.psychcentral.com/post841945-1.html

Here's a few more links included in this post:
http://neurotalk.psychcentral.com/post836803-3.html

Hope this helps!

Thank you for the reply I'll read up on that.

Just to add, my wifes pain has been out of control this month. They did a lidocaine drip today and so far it has greatly helped. We aren't sure how long it will last for, but every minute she smiles is gold for me

I sure hope the lidocaine lasts for awhile. I know how wonderful it is to have a 'good' pain day roll around.

Since she is opioid tolerant, I wonder if she'd do well with the fentanyl patch. They work wonders for me and I don't have to pop pills all the time.
May be something to check into if you haven't already.