[emtmom0104]

My name is Jessica and I am 27 years old. I am married with 3 children and work as a 911 EMT, and am currently finishing school for Paramedic. I was diagnosed in Jan '10 with RSD, after having knee surgery in '07 and then having knee trauma in '09. I have been going through sympathetic nerve blocks for almost 4 months with initial great relief immediately after the injections. The last for a few hours to a few weeks. I had an injection done yesterday, #5, and it lasted for the remainder of last night but now I am having severe lower back pain and my leg is back to being on fire. I don't know how much more I can take tonight. My leg feels absolutely swollen, but is only moderately. I have tried ibuprofen and heat as well as ice. I'm losing it quickly tonight...it hurts to sit, it hurts to stand. My dr suggested yesterday a scs and he thinks I will have good results from it. They did give me some info on it but I want to hear what other people have gone through, pros cons everything in between. I don't know how much more I can take. We have tried other things such as physical therapy, external electrical stim, heat, cold, ect....HELP PLEASE!!!

[abrown176]

Hi, I'm sorry your are having so much trouble. I am 28 and have RSD in left foot and leg. They have put me on gabapentin, sertraline, orphenadrine, mobic, and hydrocodone 10/325. I had a stim inplanted in april 09. It does give me relief, but has not allowed me to go back to work. Since implant I had to have a surgery to move the battery to a more comfortable place. I fell about a month ago and now I will have surgery on Monday to fix the battery, because I ripped the internal stiches that hold it in place. Since having it put in it has caused back pain. It is possible that the RSD has set up in the surgical sites. The can reprogram to make it cover the back too. I will not have it removed yet because I feel I have to much invested in it to take it out. Some people do have no problems with it. I though have had a rough road with it. My doctor also said my back could be hurting from the way I drag myself around while walking. I not sure what it is. Good luck with your journey and hope you can be painfree or atleast some less. If you have any questions about anything feel free to ask.

[Rrae]

I'm glad you jumped over here to the SCS forum..... if you've read many of the stories and testimonies here, you'll see that, indeed there ARE many pros and cons.....

I too, had a few of the SNB Injections....with very short-lived relief. My pain Doc DID say that it is a good sign if you responded to the injections, that you'd possibly make a good candidate for success with the SCS.... but it's such a hard call to make. I would definitely ask him if he thinks there'd be a possibility of the RSD spreading...... that does seem to be an issue with several here.

The upside of this is the fact that you can do the trial first.

I've heard several folks over on the RSD forum say that using Ice is a big no no.

Would Dr be willing to give you something stronger for pain control?
I sure hope your pain levels have gone down since you posted your first post. It's not easy to even think straight when the pain is that overpowering.

Please keep your thread updated ok! We CARE deeply, and feel a bit 'helpless' at the same time as far as what to suggest.....It's imperative you have a Pain Specialist who is truly looking out for your best interest (rather than just being anxious to sell another of these VERY expensive units)....

I, personally am doing pretty well with my implant, but I've only had it for one month and I'm still titrating off the strong pain meds..... so I'll need more time to really get a better idea. There's no doubt it is helping to 'mask' the pain......
but my concern is.....will this last?

We'll talk soon
Truly Caring
Rae

[Leesa]

Hi ~ You poor thing. You're so YOUNG to be having all this trouble! Good grief.

Like you, I'd tried everything, from surgeries, to every injection every made, every therapy they had. You name it, I tried it. Then the doc suggested the SCS. I had the trial ~ BUT, they gave me so many restrictions during the trial, that I didn't get a good pain assessment. Heck, I was new at this, I didn't know what I was doing. I just did what they told me to do ~ and what NOT to do. So I thought the SCS covered my pain quite well. Then I had it implanted, and after the initial healing period I went on about my normal routine, and WOW ~ the pain came back big time!!! I had it reprogrammed many times, but it seemed like all the SCS did was irritate the sciatic nerve and the back. I tried it for 6 months, and ended up having to have it taken out ~ which is ALOT worse than having it put in!

If I were you I'd ask my doc if i could have the Morphine Pump instead. I had the trial for that, and I had NO PAIN AT ALL! It bathes the nerves in morphine, but the drug doesn't go to the brain at all, so you don't get "loopy.' Unfortunately, I couldn't have the pump cause i'm too little and don't have enough "fatty" tissue. The SCS tried to work itself out, and the pump is bigger than the SCS.

Best of luck, and I pray your pain is eased whatever you decide. God bless. Hugs, Lee

[emtmom0104]

I too am really small, less than 100 lbs, gotta love an incredibly stubborn metabolism...NOT! Most pain meds knock me out cold! I have tried the gabapentin in several doses but it still makes me incredibly too tired. I have had 5 injections since January '10, get a pretty good amout of relief but it NEVER lasts! My pain is better than it was the other night, asked hubby the other night to amputate my leg. Probably the worst it has been in a long time. My dr and I have discussed the SCS on several occasions but he has completely left it up to me wether I want to go through it or not. He has given me informative DVD's and told me to call him with any questions and that if I wanted to talk to someone who has had it done to let him know and he could have a patient call me to talk to me about it. He asked that when I call him this week for my weekly check in that I let him know what my thoughts are on the trial and then possibly getting the implant done, just because of having to get it authorized by my insurance. My job requires me to be VERY functional so medications are not at all the answer for me since most of them make me "loopy" and I can't function the way I need to. Peoples lives are literally in my hands everyday. I know I will probably have to take several weeks off from work I love my job but it might be a little slow down that I need. Is there a specific place where I can see all the pros and cons listed? I haven't had an incredible amount of time to research this, been in the hospital over the last few days with a heart problem. I am young and haven't been diagnosed long, although have been in pain for several years, and then hubby doesn't really get involved I just get "whatever you want to do I will support you". It's extremely hard and frustrating when they have no idea how much pain you are really in and how to help. I hide pain pretty well and am not one to complain unless I'm seriously hurting. Any info or links or anything else anyone can offer, personal stories...ect....PLEASE send me anything! Thanks in advance!

Jessica

[Rrae]

The info your Dr gave you,....if you haven't already, go to their website (Mine is Medtronics) and they give somewhat of a breakdown of the pro's and con's.....

I did SO much searching on line....literally do a Google search on "Spinal Cord Stimulator Pro's and Con's"

Read thru the posts that people have shared here on the SCS forum (if you haven't already)......

I personally would opt to at least do the trial, then you won't have that 'what if' question lingering in the back of your mind.
You'll be sore for the first couple of days from the trial procedure, but other than that, it's not that big a deal.... and should you decide to get the permanent, if you follow the post op restrictions and your Dr is VERY experienced with this procedure......you could possibly get most of your 'life' back.
BUT that's why the Dr only gives a 50-50 chance of success...
there's really no way to guarantee how it will turn out.
It's simply too much of an individualized form of pain therapy.

From what i can see as your 'personal' Pro's.....you're young
(recovering from surgery should be easy) I'm 46, and was up and back to work (but mine is office job) within 2 wks....
You don't have any systemic infections going on....correct?
Surgery should be ok.....your Dr seems to feel comfortable with you doing it......
But, yes, READ what others are saying! Pain pump may be the way to go for you....

Whatever you decide, just know that we are here for ya.....

Rae

[Mark56]

Hi emtmom! Echoing Rrae's comment regarding doctor supplied information, my doc gave me a DVD pack on the product we are considering, the ANS EON Mini. The pack came loaded with information, the DVD, and contact information such that I could be in touch with a patient ambassador or two, as I have. Thoroughly reviewing such information in addition to the discussions found on this site will be best for bringing you up to speed. Golly, and down to the ultra-practical, a patient ambassador with whom I spoke at length even talked me through toilet use during the Trial. Now, that was pretty up close and personal, but she was just VERY forthcoming with information in aid of considering any SCS procedure!

I agree with other posts on your thread, I ache to learn of someone so young as you enduring the trials of pain as you now live. May you find the means through this discussion and your ongoing study to transcend the pain and live unencumbered with aches! I am approaching the Trial phase on my path. I just have to get beyond the psych review process upcoming next week..... should be fun , NOT. Oh, well, gotta follow the multidisciplinary standards of care as my surgeon told me this week.

ALL of the BEST to YOU!!
Mark56