Hi guys, I had SCS surgery in December 11.my CRPS is in my left foot.I am still having severe pain around the surgery sites.Cant do much of anything.Still on crutches and in wheelchair.I would love to hear of fellow scs implant people.Im in UK and had my scs surgery at The Walton Centre .my neuro nurse check up is in August...any advice etc

Hi Lynn

I'm sorry to hear you're in so much pain still after 6 months. I hope that everything has healed well and there is no infection. Is the problem with the leads or battery?
My implant was a year ago this August. What has your surgeon had to say about the pain?

I hope you have a better day ahead and get some relief.

Sandy Kay

Welcome aboard this good place! Severe surgical pain was NOT the case for me six months post surgery, and if it had been I would truly be sitting in the surgeon's office to ask one simple question........."Why?"

If you followed all of the post surgical instructions and the BLAST concept of no Bending, Lifting, Stretching, Twisting there should not be a reason for the surgical sites to continue irreconcilable pain this long. I did hurt fairly severely for a couple of weeks post surgery for the T8-T9 implant of my SCS paddles, the run of the wiring down to my right hip, and the creation of the pocket for the stim generator........ but by six months post surgery I had even fully weaned off of all of the pain medications used to manage pain pre-surgery!

Please consider getting an appointment with your surgeon to inquire "WHY?"

In the meantime, I will add you to my prayers,
Mark56zzzzzzzzzzzzzz

It's great to have you - Glad you found us!
We've several great friends here from the UK!

I'm sorry about this pain you describe, and the fact that you are still wheelchair-bound.

Are you getting good stimulation in your foot?

Something sure seems amis. I agree, get in with Dr soon and try to find out what's up.
Is this pain only at the surgical sites.....or would you describe it as burning pain, similar to the pain in your foot?

I hope you can get some answers soon. Please stick around and keep us posted!
Your Dr really needs to know about this. It could be several possibilities......battery overheating, leads migrated, infection.....

Hopefully this is something that can be fixed, especially if you are getting the stimulation you need - it'd sure be worth fighting for......but since you are still in wheelchair, makes me suspect you aren't getting the proper pain control?

Caring!
Rae

Thankyou all for the very warm welcome here....please excuse any of my typos etc as I am so good ( NOT ) with a PC that even Nasa said I was over qualiFried...and I dont suffer from Insanity....I Enjoy Every minute of it....Im not fully sure yet as to doing posts here.. yes, Im a crazy smiling Cat lady ..ok..I have crutches..and wheelchair..The SCS is helping ease the pain in my left foot ..but since day 1 after the SCS surgery my back has been bad..I expected pain from the surgery ..of which is all healed ,no sign of any infections...I did all the right post opp things ..didnt do anything that I was told not to do..Ive been back ..was re referred via the neuro Mod team.I saw the Dr..and was told that sadly sometimes this can happen ( I read all the pro,s n cons of SCS surgery.) The Dr checked the scs and battery sites and all was looking ok.The pain is like an Ice cold stabbing..I cant lean at a slight angle,it may sound silly but my spine feels like its in 3 separate pieces..it "jars/jolts. and although its not like my foot..Its as if I need susspension on my crutches.Im left thinking ..my scs is easing lots of the foot pain but my back is sadly.."one of the things we were told /warned about that could happen.. Im not sure on how I can stop the musclecontractions /spasms Sometimes it feels like every bone in my body hurts..I cant wear anything but loose light cloths as my skin dosnt like much touching it ..not all the time..mainly when Im hurting bad.I also wear hand splints/straps (due to long term use of crutches )..and I often fall always landing on my right knee..which is now bad..tween the devil and the deep !Any advice,tips ect MOST Welcome..thankyou all ..Purrs n Smiles (yep, I purr....crazy cat lady..must purr ! )

Forgot to mention..Im Still on all the same meds..plus the instant release oxynorm..for when I really need some fast relief..morphine.zomorph,naproxen, ,omeprazole,amitriptyline,pregabalin.

Far too well acquanited with all of those, and I do not like taking anything even remotely like that now.

Prayin,
Mark56zzzzzzz

Hey, one thing you've surely got goin for ya is your sense of humor!
Tis very necessary in keeping the depression clouds away.

Thanks for describing the pain your back is giving you. Know what? I am in the same boat you are . I love the stimulation from the SCS, but ever since I've had it implanted, I've been dealing with those horrid back spasms. They're so bad, I can't even stand up for more than 10 minutes before they start kicking in.
I reckon I'd still keep things the way they are now if given the choice to go back to how I was before with the piercing/burning CRPS pain in both legs. I do not have any of that anymore thanks to the stim. Well, it's still 'there' of course, but not feelin it....you know what I mean.
What a trade off tho.

I don't have the stabbing/jolting pain you refer to. I'm sorry you are dealing with this!
There are reported cases of CRPS spread after getting the implant....do u spose this might be happening? The 'ice cold stabbing' sounds suspiciously like crps. I certainly hope not.
I wonder if that jolting you are feeling when you lean could be scar tissue pressing on a nerve or the electrode shocking you?
Just throwin some ideas in the air.

I know what you mean about the loose fitting clothing. Me too.
I've never been nominated for the best dressed award in fashion, that's for sure.

I take aLOT of meds also. Do any of yours help in any way with the spasms? I take baclofen, which helped at first, but lately I'm getting alot of breakthru and I'm going to see my Dr about this next week.
Benzodiazepines are known to help with spasms. I have a low dose of Klonopin on hand for emergencies and I must say it does help.

I sure wish we could get a better explanation as to why these back spasms started when we got our implants.

Rae

Hi guys, Thankyou all for your responses. Passing Rrae a lifebelt..cant abandon the sinking ship without trying the "lifebelt" on for size..
The main pains in my back are around the surgery site ..I can feel a difference in my spine..where the scs wires are and leading to my battery.When these spasms start and the mussle contractions I feel as if I have GOT to breathe out all the toxins/meds...it sounds silly I know but thats the only way i can discribe what I feel I must do..Breathing deep..then blowing out.. I just have to stay still and wait for it to ease off. I have Oxynorm to take when Im needing instant pain relief.but Im finding I feel really Yuk ..sickly and as if Ive just had the one drink too many..even though Ive not had any alcohol since the start of the crps..after a few hrs of taking the Oxynorm (Oxycodone hydrochloride) I also have hand issues due to the long term use of crutches ..I drop things all the time.......I will never get offered a job in a China ware shop !..
Before this crps I was very active outdoors person..camping,hiking,horse riding,travel dog walking with my two tibetan Mastiffs..ohh the plans I had ...then I twisted my ankle stepping off the moving walkway in Philadelphia airport on Christmas day 09.My 2 week holiday with friends in NC ended up with me being in Philadelphia hospital for 10 days..then being told I could not fly back to UK but could do the short flight back to NC..where I stayed with my friends ...again...til 23rd Feb..10..after having a spinal nerve block .The NC Dr was the one who diagnosed my crps..I giggle about that extra Holiday sitting around with my feet up all day !No Fun. I love Fun . I see the Neuro modulator team in August..
Rrae..I need my sense of humour..its the only thing that keeps me Insane.... I had lots of hobbies..I use to go to cat shows with one of my cats. Its actually through this Cat that I began to travel..(he..Alfie..likes car rides..the longer drive the better...so driving to Germany was really Great fun..I also met most of my friends via Alfie..Yep..I owe Alfie so much more than I can give him...( he wants his own car ! a Very FAST car..)..Hmm Ive gone way off the crps and scs stuff..sorry..its Alfie,s fault......ok now you can stop yawning now....Purrs n smiles..CCL..aka Crazy Cat Lady.Lyn n Alfie

Wow, Lyn...you've been through a lot of UN-fun stuff! So sorry that you're still having so much pain even after all kinds of treatments and procedures. As my young nephew would say, "That mega-sucks!" I think you should concentrate right now on teaching your cat to drive. That way you can take long trips together and you won't have to do all the driving. There used to be an old Sat. Night Live sketch called "Toonces, the cat who could drive a car," and your post made me think of that silly thing. (Love your sense of humor!)

On a more serious note, I'm sure you will find some great suggestions and support here among this group. I'm kind of new, too, and hopefully awaiting the trial for my SCS on July 24th. Wish I could be more helpful to you, but I'm still not even sure exactly what to expect. I will be hoping and praying that you will find a resolution and relief from your pain very SOON!