Good afternoon
 

Its very miserable here today, its not sure if it wants to snow or not , we do need a BIG thaw though, sick of the snow now!!!

Have been out this morning and now Im in bits!!! My legs are acting up a lot today. I wonder is it this cold weather, Im sure its not helping.

Last night in bed I was SO restless, so much so I had to turn off my stim as it was driving me mad:eek:. I was twisting and turning to try to get comfortable.

Sometimes I find the stim 'annoying'. As generally I have it on 24/7, but then when I get to that stage I just have to turn it off for an hour or so.

Its then I know it is definitely helping with the burning, boy do I burn!!!.....I just wish at time I could get it to tackle the pain flares I get in my back!!!...so lying down here on the couch for the afternoon and Im buzzing. Its feels like a massage at the moment which is nice and relaxing.

Hope you are all having a good day.

Take care

Jackie :grouphug:

I turn it down lower to sleep
 

For bed, since it seems to ratchet up in a prone position, I turn it down lower to tolerate it during sleep. Have never turned it off since turning it on in July.

:hug:z
Mark56

Happy Sunday everyone:)

Having a couple of bad days lately:mad:......some days I just wish I could get rid of it all!!!!!! Stim is doing its best to help me but my back is aching some days so much that I cant do anything, everything is a chore.

At the moment I have a 'stinging' sensation where the battery is situated. Which is odd, I thought at this stage that that had all settled. Its still a bit sensitive too:eek: but its sending a shooting pain down my back into my leg which is so uncomfortable and boy does it hurt!

But I know Ive been overdoing it a bit too what with Christmas coming up. We put up our tree and have our decorations nearly done. And being a perfectionist IM the only one who can do it right:rolleyes: hence Im paying for it now I think!!

Anyway hope you are all enjoying your weekend and looking forward to the holiday season!!!

Happy Christmas everyone

Jackie:hug:

Oh no!
 

Jackie!
I'm sorry to hear this. I'm getting red flags from what I'm reading here! :eek:
I strongly suggest they take a 'peek' at your system!
Really!!!
Is there a way you can get in and request an xray, or at least a check via fluoroscopy?
If you are getting a 'stinging' sensation, it could very well be something related to your leads!

I ran across a very informative link and I was going to put it here under a new thread talking about lead migration! I was floored!! :eek:
I found it using 'Google', but when I tried to put it here, it couldn't be accessed unless you 'log in'.....so was unsuccessful, but I will try to find information similar to what this article was saying....
Lead migration is VERY common......much more so than I realized!

Jackie, PLEASE have your battery looked at! I've heard of leads breaking loose from the IPG, and migration and revisions are very common!
I hate to sound so dramatic......I don't mean to be..I'm just saying, PLEASE have them take a look just to make sure everything is where it should be.
Schedule it as a 'follow up' visit.....

It was that 'stinging' sensation that made me quit using the programs that caused that discomfort......and many months after the fact, I find out it is because the lead had migrated....and the other program that I use works just fine because it runs off of the lead that is ok......the other programs were shared off of the lead that had migrated, so I got that terrible stinging (like a bee sting.....a very BIG bee!)........I really wish I would have had it checked out a long time ago, but I just kept procrastinating, because I was tired of all the Dr appointments and since the one program works so well, I just left it at that. But my back pain continued getting worse, so I finally decided I better get checked out......and you know the rest of my story.......
Just a thought. :hug:

Caring as Always
Rae
:grouphug:

Thanks for that Rae:hug:

I will get definitely speak with my Dr who unfortunately is away at the minute:mad:arent they always.

The stinging isnt that excessive though its just there the odd time. But with the two leads Ive the sensations going down both legs now that HASNT changed whatsoever since it was first turned on. In fact I did think that it was covering much more of my legs and the sensation was a lot better, thinking that it was scarring it perhaps!:rolleyes:

But yes I will definitely have it looked at, probably wont get it done this side of Christmas though. Our hospitals seem to close(ahem) well as good as, once Christmas is upon us. I remember being in hospital at this time 5 years ago and I felt there was NO ONE around I was discharged on 17th and it was 'dead' in there. Then when I went back on 6th January for my Fusion there was still very little staff on, still on holiday!!!.....but yes I will definitely see about it.....
Im going to keep track of it from now til January and at least I will be able to tell him exactly how it is, plus Im due a tweaking session!

Hope you are keeping well too Rae and that this stress from your migration/revision isnt affecting you too much:hug:

Thinking of you Dear Jackie!
 

Hope you are doing ok.......been awhile since we've heard from you....
Just wanted to send a couple :hug::hug:'s your way.....

Guess what! Well, as you know my current situation, with the lead out of whack and all the lumbar back pain and such......WELL.....I decided to just turn the dang SCS OFF......just to see where I'm at with my 'normal' :confused: pain.....
I've had the unit OFF for TWO DAYS ..... and I'm feeling GREAT!!! :eek:
WTH??? :confused:
I'm on a new 'Muscle Relaxer' and between that and low dose Neurontin at night, it seems to be keeping the burning leg pain at bay.....
Wonder if this will last??

What if you turned yours off for a spell, just to see?
And IF, by some chance your back pain subsides while the unit is off, then Gee WHIZ, I'd say something might be 'amuck' here........
......:confused::confused: did we both get our SCS's out of the same ... 'batch'... ?

Hmmmmm.

Wow, Rae, that is something.
 

I have never turned my unit off, but have turned it all of the way down, and the burning sensation is exactly as it was pre-surgery, so I figure on keeping mine running 24/7.

It does kinds seem Jackiey, like you have a lead slipped at the unit itself, causing that shocking sensation, and getting to the Doc is the way to confirm. Rae, looking forward to your revision, although if you become convinced the meds are better than the stim........ Well? What then?

Prayin for you both,
Mark56:grouphug:

Indeed I am bewildered
 

I have NO idea what is going on with me!!!
I am thrilled beyond comprehension because it has been FOUR DAYS now that I have not even turned my unit on.......and I am feeling like my 'ol self'...
........ the 'ol self' of SIX YEARS AGO!!

I'm too confused at this point http://dl6.glitter-graphics.net/pub/...q6iir91xph.gif to even try to figure out what to do about this........

The burning neuropathy in my legs is GONE!! .....
Have I been HEALED?! ......... mmmmmmMMMMarrrrkkk!! :rolleyes:.......did you by any chance PRAY for me?! :rolleyes:
I dunno, man, SUMTHIN is goin on, and it almost seems too good to be true!

Thank you
 

Hi everyone. Still here. Sorry for being MIA but have had a couple of off days.

Thankfully the stinging has subsided and all seems to have settled down again
Hopefully t will stay that way!!!

Rae :eek: I'm in shock to say the least what is going on???? Wouldn't it just be fantastic if your pain and buring is actually gone. OMG you must be beside yourself. Fantastic!!!

Can't say the same though. I turn my stim off when Im recharging and the burning is still there oh yes it is. It's actually then I realise how much work this stim is doing. Pain is also there with a vengeance. I really need a tweaking session. So asap when xmas is over I will contact my Dr to arrange one.

This weekend is my youngest daughters birthday. She is 18!! Bless her. So we went out for a meal last night. Paying for that this morning though but will rest up today or at least thats the plan ;) But we had a lovely time. Tonight we have a small party laid on for her. With all the young people from her school who are all Special children. So they will have a ball I'm sure. So a
great night ahead. Only hope the snows keeps away! !!!!

Hope you are all keeping well and looking forward to the holiday season!!

Take care

Jackie :grouphug:

You've been BUSY! Today you are getting things ready for the party for your daughter. Precious moments! I hope and pray you aren't gritting your teeth in pain as you put on that 'happy' face.....
With the cold weather, the Holidays, hustle and bustle.....it's hard to keep things in perspective as to what's going on with our 'units'.....So, like you say, after Christmas, hopefully you can get a full on tweak....I'd recommend asking your doctor if he can take a peek via fluouroscopy at your IPG and the leads......just to 'make sure' things are where they should be.
It would be nice to actually be able to 'see' that things have scarred in properly. Personally, I think this should be a part of the whole 'package' of receiving an SCS....A "Follow Up" visit to confirm things are all in place.
It wouldn't take that much of his time.

As for me....... :confused::confused:......I am completely at a loss as to what is going on!.....
........you know what, I feel as tho I am 'hijacking' your thread, Jackie....because I just got done typing about what is going on with me....and it is a LONG post......I decided to copy/paste it over to a thread I will start of my own........:)

What a brilliant revelation! :o:rolleyes:

Anyway, it is great hearing from you! I realize by now, that when one of us goes 'missing' .... it feels as though there is a 'hole' in our little forum....
I realize how each one of us is like a link to a chain...each one of our stories is so valuable and unique, that without our ongoing communication....the 'chain' loses a link, which of course makes for a Broken chain :grouphug:

.....hint HINT for those of you who are........MIA.....http://dl6.glitter-graphics.net/pub/...pedprtp6tk.gif......yes, you KNOW who you are....

ok, I'll shut up and go start a thread of my own http://dl9.glitter-graphics.net/pub/...od3gv2ym2u.gif