Eee I'm fine .. Rob offered an opt out there and then ... but I said, I had the battery inside me, I might aswell give it one more go.

I know that if they can limit the sensation to just the one leg, that I will be far more positive. I told him that it's distracting being in my good leg too, as I feel even more disabled .. he agreed. Plus the buzzing between my legs is not good either and has the tendency to make me incontinent so I don't use the stim now at all, which he fully understands.

I'm still smiling .. x x

Hi Saffy
 

It is possible to limit the stim to the one leg, bypassing the trouble between the legs which can be more trouble than worth as you mentioed. No need to take healthy tissue and render it susceptible to those kinds of things. So, keep that smile, it should be susceptible to resolution, either by programme tweak or a revision if that becomes necessary. I know one of my programs works only a single leg, and I set it up that way purposely, and this is while my paddles are also programmed to hit other areas as well. Thus for me it is a selection between programme.

Keep your smile,:)
Mark56:hug::hug::hug:z

No .. he tried every which way, but was unable to get the stimulation out of both legs.

He feels if they put in another lead that I will still end up with the same so they think a paddle will be better for some reason?

That I understand
 

You and on target...... I was forgetting, you are leads, and I am paddles. I am able to select between the two in order to limit sensation to one leg or the other or both with the low back or without. Paddles for me, and maybe for you.

:hug::hug::hug::hug:z
Mark56:)

Too hoo, just popping in to say hi. Still waiting on a call as Rob is on holiday till next week.

Am having probe with my battery .. When I bend over it nearly flips over in my stomach and clips mynribs. Does anyone else get this?

SCS flipping over
 

Hi Karen,

I've just been reading through some of your posts, hopefully they will sort things out for you sooner rather than later. I sometimes feel like my battery is going to flip over when I move a certain way, it's down too low to clip my ribs but the sensation is very weird. I do sometimes have to move the battery, almost push it a certain way if you know what I mean. I asked the technician the last time I met her if it could flip over and she said that it is almost impossible, she showed me on one she had in her bag where it's stitched into in my abdomen so that gave me some confidence. I think, i think it could happen so I worried about it but the reassurance helped.
Do you have any problems with your waterworks. I notice when I'm in alot of pain that I find it difficult to go even though I feel the need to, does this happen to you?

Chat soon,

Sinéad xxx :)

OOh Sinead .. thanks for the reply .. that's reassured me !

Re. the waterworks .. I agree totally .. I sit on the loo and have to tell myself why I'm there. Haha. It's almost as if your brain wont connect.

Tired all the time now I'm back on the meds .. and with feeling a bit low. Will get there though. xx

Back on the meds again
 

Hi Karen,

i'm not doing so good either, maybe im still recovering from the revision surgery two weeks ago. My back is killing me again, it's like someone is stabbing me at the site of the surgery every time I lift my left leg and try to walk, this means i'm not walking.
Since the surgery my left leg is also kicking up a stink again and not only am i getting the nerve pain there but muscle spasms in my left leg thigh. I still have that ring of pain around my hips.
A pair of a crocs me thinks.

Lets hope the pair of find some relief shortly and the necessary adjustments can be made. I believe your surgeon is now thinking of switching to paddles, I wonder why they can't just use paddles from the first instance instead of messing around, it's alot of messing for the patient and the health service.

Chat soon hun,:grouphug::grouphug::grouphug::grouphug::group hug:

Sinéad :)

Oh, hell fire, I'm so sorry you're having problems. We should all get-together really as I've been in bed all day after my back went into a mahoooooosive spasm. Trying to knock myself out with diazepam, tramadol and amatryptilline butmam also suffering hot flushes ... Yup, it's that time of life for me.

He he .. Heres to a better day tomorrow. Xx

Sopie/Saffy
 

Oh Gee whiz..... Golly it sounds awful you have been in these recent predicaments. Yes, there have been incidents of others with battery placemenets which did go awry although they should have fully scarred in. Revision surgery was called for in order to better situate the battery in each case, and I hope and pray that is not required in your situation Saffy!

Pain in the legs sounds awful for you, thus, I pray the pain moderates for you and soon. When this occurs for me, I use my remote to increase the signal so as to overcome what I now know as a pain spike as I no longer use pain management meds.

The waterworks...... well, I have not written of this, but it can be an issue for those of us who have lower body placement for remediation of pain, as the nerve bundles which serve the lower body do include those as well. With you there is an interruption and with others there can be some leaking. I have found that if I adjust the signal before entering the WC so the signal is lower, I have better control, take care of business, and THEN after a good wash of the hands, up the signal once more.:)

Oh, and you might be interested I made a trip from our home in Colorado via plane yesterday to Wisconsin, where I acquired an Eagle Talon Tsi all wheel drive sports coupe. A used vehicle which needs a little cosmetic care, but that Turbo..... WOW! Additionally, at highway speed, 26 miles per gallon- I don't have time to work the kilometers per liter conversion since I need to get back on the road [about a third of the way back home to Colorado].

I will tell you one thing. It is joyous being able to feel good enough to make such a trip again, as I keep my SCS working right along to manage pain throughout.

May each of you have a blessed rest of the day!
Mark56 :D
P.S. I am glad of the windshield, because with that grin, I would be catching bugs in my teeth. He He!

Ha Ha Mark .. OOh I bet you had a smile .................................................t his wide !

I have been bed resting the last two days due to back spasms .. which seem to have increased since the op for some reason .. probably coincidence. Anyhoo .. I've just been to our local shop and bought a nice botle of Merlot and am enjoying a glass. Feel loads better already ! (*grin*)

Physical Therapy
 

Hi Saffy! Oh, those spasms..... hurt, they do..... and not good at all. Do your consultants have you engaged in any physical therapy? The reason I ask is that one true help I found aside from Flexoril has been a very warm therapy pool in which my therapist would have me progress through a routine of exercises. At first the exercises were taken very easily, then progressed to a more vigorous workout which ultimately would take me two hours three times per week, but the spasms did seem to calm.

From time to time I will have spasms although rarely now. Just a thought.

Yes, I loved your image of my wide grin, about this big
: o) Yeah, just kick in that turbo...... and pass a big truck.... zoom.................................:D
Mark56:)

No .. the people at CHesterfield Physio discharged because I was still having problems with my stim. As you say, I could probably have done with some gentle hydrotherapy. I'll get onto my main Physio at Sheffield when I get the chance ... it's just that at this moment in time I'm waking up and I really can't be bothered to do anything !!

Well .. I'm glad I chased them up as I only got a call yesterday from my Pain Consultant who had only just received it (from 2 week's ago!) ...


They're having a meeting on Wednesday so I will hopefully know something by the end of the week/month/year ... tick which one YOU think it will be .. lol

i say at least 3-4 weeks. my revision took may 11 to July 27. to get things done. they are not pain. so time means little to paperwork.
ronh :grouphug:

OOh that's not long !!! My pain doc called yesterday and apologised for not getting in touch sooner, but they are having a meeting re. myself tomorrow .. so I should hopefully hear something within the next week or so.

The X Ray showed the leads were still perfectly placed .. so who knows. (To be honest, I thought my falling off the lilo in the sea when a rather huge wave decided that I shouldn't be floating on the sea, might have caused damaged, but no.

I've not been lifting heavy weights or anything .. but after a couple of weeks after the op I was cleaning and doing bit of weeding in the garden .. cleaning the rabbits out and so on. (I'm that sort of person .. I just can't sit and look at things that need to be done)
Am quite chuffed that even after all I have been doing the leads were ok.

Good News about the leads
 

Now, assuming the meeting was truly discussing, among other things, your case, I vote for them to be back to you Tomorrow [I am just that way, built with this obsessive optomist gene or something], so there you have it. My vote. I hope your ride in the sea was not too cold since you were drenched.

Regarding light housework and garden work from your knees or squatting and NOT bending, seems like you oughta be good to go, maybe with need of a tweak of some sort.

Blessings on you Saffy,
Hey, we oughta race Tootle against PJ [my white little car] could be fun, and stimulating and all of that! Just have to cross that large body of water in between!:D

Prayin,
Mark56:grouphug:

Hello my lovelies .. well .. am awaiting a call from Donna (Nurse) to ask what went off at last week's meeting.

Fingers crossed she will have SOMETHING to say !

Well, no call as yet .. There's always time, she's only a day late in returning my call yesterday.

Beginning to feel a bit like a discarded sock.

Those awful spasms
 

Hi Karen,

How are you? Have you heard anything yet from the nurse? You're right to follow up with them, even phone your Consultant directly, i've done this too although I don't like doing it but sometimes you just have to, I told him this too that I wouldn't ring unless I was in alot of pain.

I was speaking with Rae recently and she mentioned that she too also suffered awful spasms after the surgery and i've had the revision surgery and they upped the voltage on the leads and now my stim is working better but I haven't had much luck with the pain yet. Perhaps the spasms after surgery are just par for the course and they will sort themselves out eventually.

I had an appointment for next week with my consultant, I wanted to speak to him about the surgery and discuss these spasms and what next if there is anything next, i'm in desperate need of some hope that this isn't it and they cancelled the appointment until the end of August which will be two months after my revision surgery.

How long is it now since your surgery?
Alot of what you say reminds me of how I am, I too want to be out doing stuff that I probably shouldn't be doing, things that i'm not able to do but because I want to do it, I do it and pay the price later.

Sinéad xxx :):)

Hi Mark,

I have just read your post on your new purchase.... it's some nice car, is it an automatic or a manual. It sounds like a lot of fun to drive. Will it need some cosmetic changes?

Enjoy your new car and please play safe.

Sinéad :)



Oh, and you might be interested I made a trip from our home in Colorado via plane yesterday to Wisconsin, where I acquired an Eagle Talon Tsi all wheel drive sports coupe. A used vehicle which needs a little cosmetic care, but that Turbo..... WOW! Additionally, at highway speed, 26 miles per gallon- I don't have time to work the kilometers per liter conversion since I need to get back on the road [about a third of the way back home to Colorado].

I will tell you one thing. It is joyous being able to feel good enough to make such a trip again, as I keep my SCS working right along to manage pain throughout.

May each of you have a blessed rest of the day!
Mark56
P.S. I am glad of the windshield, because with that grin, I would be catching bugs in my teeth. He He!

Ahhhh the Cosmetic of it all
 

Well, the sole cosmetic issue is the leather on the driver's [dare I say pilot's?] seat, as it needs some replacement of a panel or two for restorative purposes. The trannie is automatic, which on such an old [1995] sports car is a nice thing, because at 69000 miles, it is still in good shape. Such a vehicle with age/mileage used by someone poor in clutch skill could have had serious transmission, valve, timing issues, a problem avoided by the automatic. But, wow, any friend of mine who has driven it has gotten this BIG GRIN when the turbo kicks in and we go zooming away. I reckon if I cannot downhill ski anymore, this might just be the right substitute!!!! :D:D:D [Notice the Grin]
Mark56

Your cool new car
 

Hi Mark,

Of course I wasn't thinking... those of us with crappy back and awful nerve damage benefit hugely from an automatic trannie as you call it, the next car I buy will most definitely have to be an automatic, no doubt about it. I have a Volvo S40, runs on diesel as I do alot of mileage but it's difficult to get in and out of, so practical. Your new purchase can give you loads of enjoyment, the feel of power on the open road... nothing like it.

I have to say though, I love a stick shift on a poweful car, Paul's favourite purchase was a Sabuaru Imprezza with loads of horse power and some fantastic umph that I loved to drive, the stick shift just made it all the more enjoyable when you go down a gear, gain power and just let her off.... I loved that car, until some houlligans one night broke into our house, stole the keys, got away with the takings of a 24hour service station and then let the car off down the side of a mountain.... we both cried :(

The very best with your new car and i'm delighted that it has only minor cosmetic changes to be made and with 69K miles for a 1995 I think you're onto a good thing. Will Cleo enjoy that roar and power too? If not, please ask her to take it from me... she will enjoy it too...

Chat soon,

Sinéad xxx

Hi Sophie

I too found it difficult to get into my previous car which was a black Peugeot 307CC. Convertible with all black interior leather. Fabulous!!!! Just loved it, it was a manual. But like that it was a 'pain' pardon the pun , to get in to it and out of it. Soooo I went a bought myself a RED Toyota Rav 4 automatic 2 litre. And boy does it have some umppphhhhhhh :D
It's also higher up which means it's a doodle to get in and out of it plus it has 5 doors. Well worth the change. Although on our rare sunny days here in Dublin I do miss my convertible especially flying around with the roof top down!!! Ah heaven!!!

Hope you get to speak with your Dr very soon

Jackie :)

Car stuff
 

Hi Jackiey,

Thanks for your reply, how are getting on? okay I hope, i'm in good form, i'm on annual leave at the moment and my back and it's rotten spasms thank me for it.

I too had a 307HDI 1.4L and i loved it, sold it for the Volvo, I absolutely love the volvo, i love driving it, it's comfortable, it's safe and it feels safe, I love the comfortable leather seats and especially the cruise control that allows my left leg to take a rest. It's also got A/C and in this weather it's great. I drive to Maynooth from Newbridge every day, takes me about 40-45 minutes and I tend to leave a little earlier to avoid the school traffic in both Newbridge and Maynooth so i'm not sitting there waiting for my hips to get sorer.

I'm saving towards buying a new car, an automatic, and i'll take a look at the Rav4, common sense and logically it will have to be diesel, i've driven one before and fab, none of this pulling myself out of a car like an old woman of 90!, i'm finding it difficult to save money at the moment but please God i'll be able to get back to work full time and actually be able to change my car next year i'l have a nice Rav4 instead of my fabulous Volvo, i'll hate to see it go.
I think this calls for a new thread on what type of car people have that helps them get around....

Thanks again hun

chat soon ;)
Sinéad xxxx

The Trannie
 

Ahh Sinead, I do understand and feel with you that verve of excitement when one receives a kick in the pants as the gears move up through their synchronicity of shifting with that feeling of power. The trannie? A professional driver's reference to a transmission. You see, when I was in youth seeking funds to provide for the education I sought, I worked much in construction and did drive large [some extremely large vehicles with great power] earning quite good money for a student on summer leave so as to continue studies as the next term would begin having more cash in the bank.

My favorites:
1. The Oldsmobile 442 with Hurst shifter in the manual transmission configuration I owned as a lad of 18 in college. Many a time was I challenged to race with someone because of the obvious power of such a muscle car [never did though, and was never cited for speeding while I owned it].
2. A Kenworth diesel ten wheel tractor without trailer I was roading to pick up a load of heavy equipment. Now, one has never actually felt the kick of power and dexterity in the manipulation of the gears until they have driven such a powerful beast unloaded while working the double gear boxes manually through the combinations of a 5 speed and 4 speed transmission configuration. What a kick.
3 A Caterpillar 988 wheel loader with front bucket for moving quite large quantities of earth or road building materials, although lumbering, it is a charge climbing two stories up to enter the cab and take the controls of such an automatic transmision monster. The 966 Cat loader was my favorite, though, for its nimbleness, carrying capacity, and significant power in a smaller package.

Enough of this, I guess, just suffice it to say, YEAH, I can relate to the notion of driving some kick in the backside land based vehicles, although a truly spirited experience is riding in the right cockpit seat of a Learjet as it climbs out and rapidly ascends to 45,000 feet. It could cause one to fantisize about flying a mach plus fighter aircraft purely for the thrill, although that has never been my lot..... sigh. Having these legs, I reckon I will not see such an accomplishment, and besides which, I am too old to head that direction in this life.

But then, I digress,
:DMark56

How is our Saffy doing?
 

Karen, you are on my mind and I hope things are looking up.
I'm praying for you
:hug: Rae :hug:

Well Yeah
 

Where is our Saffy?????? Are you doing OK in this summertime heat? We wanna know!:Poke:

Yup,
Goof Mark56 :Wave-Hello::Head-Spin:

Hello my dear framily. I've had a few off days ... totally overdid it on Wednesday when I took myself to the Bakewell Show https://picasaweb.google.com/Saffy19...ELLSHOWDAYONE# See Pics !

I thoroughly enjoyed it, even though it was a really hot day and I'd forgotten the sunscreen and ended up like a tomato ! Heh .. it is MASSIVE though, and I didn't get round much of it, but what I did, I loved.

I've done nothing but sleep since .. however, this morning I woke and felt a lot brighter!

News on the stim front: I have an appointment to see Jeremy, my neurosurgeon on 1st September. I am hoping that he is going to suggest a paddle lead. Then of course, I just have to wait till they can fit me in to do this. I've been told it's a bit more intrusive than the normal leads and a bit more risky .. is this so?

Pain wise .. I'm having to keep a diary of what I take and when as the combination of drugs I am on is dangerous. Go to see a Doctor tomorrow (my normal Doctor is off but she says I must go and see someone to check all is ok). Sciatic pain is depressing me and I keep trying the stim, but can only have it on very low, which does nothing to distract me from the pain, but is a rather nice feeling I must say.

Other than that, all is well at Saffy Towers and I'm trying to get little walks in most days.

XX

Are you hoping to have the paddles put in because the leads aren't helping you?? It's not that long since you had the leads done. Im sorry you can't get enough relief from the stim. I'm thinking of asking my Consultant if it's possible that if I got paddles I might be able to address the pain in my lower back!!!! Stim does nothing for there at all. Although he isn't a neurosurgeon. So I'd have to be referred I'm sure

Hope all goes well for you

Jackie :hug:

Oh Dear Friends
 

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 :grouphug::grouphug::Heart::Heart:

I'm considering asking for paddles too
 

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 :grouphug::grouphug:

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.

Feel for you both
 

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:grouphug::grouphug:

I know exactly what you mean Sophie!
 

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 can:rolleyes:I 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:mad:

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:eek:) 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 :hug:

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 also:confused:who 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:hug:
Im glad to hear that you are keeping well today, thats nice to hear.

Well Golly
 

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:grouphug:

My dear friends
 

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 :grouphug::grouphug::grouphug:

Neurontin por mi amiga
 

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 :grouphug::grouphug::grouphug::grouphug::grouphug:

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.