Been there, known that regarding the diary of meds taken to affirm to my pain doc I was safely making use. Oh, the pain. All I need do to recall is turn my stim all of the way down, for there lingers the pain now managed by my paddles.

ANY surgery bears risk, thus the reluctance of surgeons to while away on a patient doing this and that unless it is quite necessary. Yes, the paddle insertion surgery involves much more than lead placement, as at least a partial laminectomy must occur along your spine in the optimal location for placement of the paddles in order to target the nerves to be addressed. Laminectomy? The removal of at least a portion of the lamina which serves to protect that all precious spinal cord. I have paddles and my laminectomy was at T8/9, the result being I could use the stim for pain from my low lumbar region throughout my legs [believe it or not, when I sit on my bed and gaze at my toes, the energy of the stim causes my toes to move involuntarily- kind of a weird manifestation].

Leads were my method of use during the Trial, and I have felt more coverage and safer with the paddles as I understand they may have a better chance at remaining in place. Nevertheless, having read so many posts about lead migration, I am well and truly feeling blessed to have paddles.

Prayin for you Saffy and Jackiey-
Glad you can be out and about [and that Jackiey is taking holiday],
Mark56

Hi Karen
Hi Jackie,

I'm thinking of asking my consultant about paddles too but he's not a neuro surgeon and for that reason he might just say stick with what were doing. I like him too, he's the only Dr I've ever met that actually cares, that knows pain.

Since I got the implant i've definitely had some relief but nothing like what I was hoping for, the revision surgery I had in terms of pain didn't make any difference, I do think that that the pain is now lower, going from my lower back to a ring of pain around my hips, that ring of pain has always been there and the sacro illiac joint in my hip, apparently it's related to the facet joints, lord I dunno.

The pain sucks alot, my left leg is throbbing away and i'm sick and tired of feeling sorry for myself, sick and tired of this stupid ring of pain around my hips and it just never lets up. My muscles are jerking alot too, does anyone else have this. As for the drugs they just don't touch the pain.

Some days I cope better than others and I lie alot. I say i'm fine when actually I'm not but I guess we all do that. I'm so ****** that my consultant cancelled last weeks appointment and waiting another month really annoys me. The man is entitled to a holiday, I don't deny him that, he works hard. I've asked for a cancellation and I will ring again on Friday to see if they have one.

I really, really am struggling at the moment and i'm feeling really down. I spend all day lying down because it's when i feel less pain, thankfully right now I don't have to work. Thankfully I know myself, i'm strong, decisive and a bit of a tough cookie, i guess that's why I hide the pain so much.
I'm trying to get out and just walk even for a few minutes just to clear my head but spasms just stop that one. I guess I know what i have to do but doing it is the hard part.

Tomorrow i'm going to try and get an appointment with my GP to see if he can even help me cope with the downess, if Im stronger in myself I can cope better.

I also know that Karen and Jackie are tough ladies too, we can get through this, we can cope but it sometimes is hard to see the wood from the trees.

I'm glad to have somewhere like this to let off steam, to share especially when we're all going through the same thing.

Thanks guys,

love Sinéad

Aww Sophie .. I think we're in the same boat. The pain is spreading into my right hip .. burning pain that I have to sway my body to get some relief.

Last Wednesday, although I had a wonderful day at Bakewell Show, it totally took it out of me and I slept nearly two days solid. I so feel for my husband. It's a good job he loves his job and gets a bit of social life from going out for meals with his team otherwise I think he'd run away .. lol.


Sinead, my doctor who recommended paddle leads isn't a neuro surgeon either .. he's my Pain Consultant at the Pain Clinic in Sheffield. It was he who spent over two hours trying to get some form of programme that would remove the stimulation from my right leg and from between my legs. In the end, he said I could either give up now, or we could try a paddle lead .. but that would mean spinal surgery.

I said, I can understand how the SCS will distract me from the pain if it were in my bad leg and buttock so yes, I'd like to carry on.

No, the drugs don't really touch the pain .. they just distract you a little .. The one I am on now, Tramadol, almost makes me feel speedy (Having taken recreational drugs in the past I am referring to amphetamine) .. but the pain is still there. It only helps if I dont move and like you, spend the time in bed with my legs straight out and propped up with my hoop pillow, which is a godsend!

At the moment my meds are:

Four hourly .. Tramadol 100mg
Paracetamol 1000mg

I also take 300mg Ranitidine to protect my stomach
20mg Prozac
and 10 - 15 mg Diazepam when needed for back spasm.
... and Dulcolax to make me poop !!

I'm quite happy that I'm only on that, although the Doctor has prescribed me 10mg Oxynorm tablets should I need them for breakthrough, but you all know my battle with coming off of that and my family are keeping it away from me.

I'm having a good day today .. though frustrating when I look at the gravel outside and see all the weeds coming through. My husband works so hard that his time off, he deserves to relax, not work on the house.

Dear Sophie and Saffy, how I feel for the both of you in these pain over the leads situations. Would that I was some worldwise neurosurgeon who had privilieges everywhere, it wouls be special cases of little to no effect first having tried leads into which I would delve. Dream on Mark, dream on.

My experience is limited to my pain picture, a picture, as you know was filled with all manner of prescribed meds to overcome [read manage] nerve pain, pain in general, spasm, sleep issues, and the like, then the attendant psychological draw down of relentless pain. Leads were used for my Trial and provided much relief, but somehow different than the paddles the implant surgery provided. I was as though the coverage was more localized while with the paddles, I have coverage from the low lumbar all through the legs [both, as I programmed it that way], so when pain arises which affects everything, I have an internal weapon which has so satisfied I have withdrawn from all pain meds as you know as well.

I do realize paddle insertion is back surgery with the removal of bone. This makes it more complex, healing longer, risk is an issue, and the gold at the end of the rainbow is the possibility of attaining better pain management through electricity. There you have it, my one testimonial. All I know, me, myself, and I.

Blessings on you both,
Prayin,
Mark56

Sophie Im so sorry you are in such pain even though you have had your revision!...I know exactly what you mean when you say that 'ring of pain' I too suffer with my left legs and part of my right tbh......I have what I call a 'heaviness' around my lower back and hips as if I was carrying something extra. I often say its like I have a bag of heavy books attached to my waist and its that heaviness I feel all the time. I have awful burning this week in my leg but as usual I do overdo it at times. Once Im up and doing things Im ok for a while, but as soon as I sit then thats me for the day and I cant do anything else because I seem to seize up. So I try to go for as long as I canI know, I know.....but you know at times I just want to GET BACK TO NORMAL and do all the things I used to do!!! it drives me insane

I too wondered about the paddles although like you my Consultant isnt a Neurosurgeon either and Im sure he would be of the opinion to stick with what I have for now ....hmmmmmmm but at times I do wonder too!...I am still on my medication cos if I didnt I wouldnt be able to function at all!!!....

I have tried to cut down as much as I can which basically is that I dont take some at lunchtime and try to hold out til evening time......but definitely couldnt give them up altogether.

Its awful that your appointment was cancelled isnt that a right bummer ! Thats how I ended up waiting for my permanent implant after the trial, (4 months) because my Consultant was away, not once but twice!! and yes they do work very hard but when you know that there is something out there to help you , you want it NOW dont you!

I pray that you will feel a bit brighted real soon Sophie. Try to relax now that you are off. I know how hard it is for you but otherwise this pain wins...DONT LET IT YA HEAR!!!

Take care

Jackie

Saffy ......Im wondering maybe will your Dr refer to a Neurosurgeon then if you decide to go for the paddles. I feel for you when you say you cant use your stim because of where the sensations are. How awful for you! But yes if he feels that you might benefit from paddles then thats the route to take I feel. I cant get it to reach my lower back at all. But then not sure if I did try paddles whether it would benefit my legs also....its a catch 22 isnt it. I was told initially by my Consultant that the SCS wont help my lower back but would help my legs. And yet others say they do get relief in their back alsowho knows.

I too am on Tramadol, plus Amytriptelene at night. And I also use my patches. They are Lidoderm which have lignucaine in them. Plus lots n lots of Neurofen PLUS!!..And Protium for my gall bladder problem which was brought on by my use of Lyrica and Neurontin!!..otherwise I might as well just not get out of bed.

I suppose some relief is better than none isnt it, but at times I just wish I was a 'normal' person again and not have to take meds at all

Take care Saffy

Jackie
Im glad to hear that you are keeping well today, thats nice to hear.

I have paddles at T8/T9 and with my program No. 1 reach lower lumbar and all of the way to my toes [I can tell because when lying in bed, they move involuntarily]. Given this distinction in result, it does cause one to ponder whether the combination of style of equipment and placement of the electrifying source MAY result in the benefit I derive from the stim. It just doesn't seem fair [I know, who cares about fair in life.... right?] I can achieve such a result and you have otherwise. Methinks a discussion along this line could prove fruitful with your consultants.

Prayin anyway,
Mark56

Dear Jackie, Karen and Mark,

Thank you all for your thoughtful messages, it does help, I know I'm not alone, I guess I needed to get all of that off my chest and sharing does help.

This morning I went to see my GP, I had to wait for 2 hours in the waiting room and by that stage the doctor had to help me walk to his office LOL, kind of embarrasing but I did say I wouldn't be able to sit for long! Anyway, he was very understanding, he knew I recently had the revision surgery and I explained that in terms of pain relief it hasn't made any difference.

I showed him my list that I have for my consultant when I see him just to give him a picture of where I am. He suggested going back on the Lyrica to help the nerve pain in my leg but that was a no no considering I piled on about 2stone the last time I was on it, I still have that flaming 2stone!

He then suggested a drug called Neurontin, has anyone heard of that? I looked it up on the web and apparently it's is an anti-epileptic medication and is also used in adults to treat nerve pain. So i'll give it a try and see what happens.
As for the downess, i'm already on Cymbalta 60mg per day but he's also gave me some xanax and that does help with the nerves and helps me calm down a bit. It's basically to get me through the time when I see my consultant.

Just thought i'd fill ya's in, i'm feeling better at the moment in terms of mood

Chat soon and thanks again mis amigos

Sinéad xxxx

I was prescribed 3000mg Neurontin per day as a switch out from 1800mg per day of Lyrica. My pain doc feared for my liver, the reason for the switcharoo. Neurontin did help as did Lyrica, but during the cocktail of meds I was prescribed, I could not truly separate out which caused most of the fog of the mind, the Neurontin, the Morphine, the Restoril, or the others, thus, all I can add is that the titration down of Lyrica as we ramped up Neurontin did prove a lasting help in the big picture until stim came along, that is......

Mark56

Hi Sophie, I'm so sorry that it's been so horrible for you!

I have been on Neurontin. It didn't help my neuropathy, and recently gave me brain fog problems, but that of course doesn't mean that your experience would be the same. I have seen people on the PN forum post that it helped them.