You're so right
 

Hi Karen (am i right) I read your blog, very interesting I have to say, i'm presuming you went on your holiday to Greece before your surgery, i read from the bottom up!

I am very impatient, even my Consultant told me off for being impatient and wanting results NOW, I think there are many of us on this site like that, i guess we have to be, if we don't it would be too easy to lie down and give up and giving up is not in my vocab and I bet you're like that too.

The Karin Slaugther book, Broken, came out last summer on Hardback and i'm only getting around to it now, I didn't have the concentration to read the back of a cereal box the last little while and now i'm getting back into books. I too have read all of her books and the earlier ones were better when she had her husband working with her but still they keep me interested and i love that murder, crime fiction. Have you read this one yet?

How are you getting on post SCS surgery, do you find it works well for you, we have the same one. After the revision surgery it's defintely working much better thank God, I have the back stim up higher than it's ever been and it's not hurting, stinging was my main problem and the back stim was pretty much redundant as it was too sore to have on, the one for my leg is doing well thank God.
I'll be back walking on the Curragh with my lovely husband and my mad boxer, Tigger, soon enough.

Chat soon,

Sinéad :) :hug::hug::hug:

Hiya .. yes it is Karen .. :)

So glad that this time the stimulation is covering those parts that matter .. the stinging sensastion is a bugger isn't it?! That happened to me the other week when my Consultant was trying all different settings .. owww ! I nearly shot off the seat. Just remember, you've got it right now so DO try and take it easy .. just for a little bit!

I had an x ray last Thursday as Rob, my Consultant, was unable to find any programme/setting that removed the sensation from my right leg and from between my legs .. I need it for my left buttock and left leg .. (he said it wouldn't help my lower back pain!??)

I think they are considering paddle leads this time, but as it's only 5 weeks this Friday since my full implant not sure when it will be .. I've not heard anything either, so no idea what is happening.

Not using the stim at all at the moment, and I'm feeling a bit low and frustrated, which is only natural I suppose .. so tired aswell, and I don't know why.

Yes indeed, we did go to Greece ... just for the week, but it did me so much good. The warm weather, the lovely clear sea ... bliss.

Not read Broken .. just downloaded it to my I Pod as it's come down in price !!! :D I'll let you know what I think when I've done. I think the first book of hers I read was Blindsighted .. my daughter got me to read it .. after that I had to download everything else she'd written! *chuckle*

A little potter round the garden for you later .. then you can say you've had your walk.

xx Keep smiley

Great news Sinead
 

Hi Sinead :)
So good to read that you have had your revision and that things are looking UP, fantastic. Did you have a second stim implanted , or did they move the leads. Im curious to know how you got the stim to work up in your back!? I would LOVE mine to be in my lower back and further. But unfortunately I only have it when Im actually lying down and its only when its on quite high, which can be uncomfortable also. But a couple of weeks back I had a reprogramming session and the Rep was a guy this time, and he was fantastic. Gave me a programme whereby the legs were isolated and I could feel it all when I walked, which I havent had since the implant was done last August......so that is a bonus. I can higher the right or left leg individually....now why didnt my female Rep do that :rolleyes: anyway its doing the job but using WAYYYY more power, but I dont mind I just sit watching tv in the evening and recharge!!


Saffy (Karen, which do you prefer:D) so glad to hear that your holiday did you the world of good. Even the bit of sunshine would make you feel good, especially if you have anything like the atrocious weather we've had here in Ireland in May and June.....cant believe tomorrow is the 1st July .....WHERE IS OUR SUMMER????
My Consultant told me also that the stim will not help my LOWER BACK!! I was a bit disappointed because thats what my real trouble is. But I do have awful burning, tingling in my legs so it is helping that. But I wish at times my back would ease up......but then I suppose I have to take it easy(ahem!!!) but sometimes its hard to sit still , when all I want to do it GET OUT IN THE GARDEN!!!!

I hope you hear soon when you will have the paddles put in.....more surgery, but then if it helps and gets rid of that awful feeling you mention then its a bonus!!!

Take care

Jackie :)

Hi Karen, Hi Jackie
 

Hi ladies,

I guess I'm lucky to have mine working my back and my legs, i know that Jackie has a different set up to the Medtronic that Karen and I have and i dunno how I have it working on both my back and my legs, my consultant gave me a choice before the permanent implant, he told me i could have it in both my legs or just my back, I said that my left side back and leg were the worst so thankfully he managed to put it on my left leg and left side back, it works much better for my leg but he told me that would happen.

Since then then I hope the revision surgery has helped my back too so I have the best of both worlds. When I went to see my Consultant to explain the horrible stinging sensation in my back, that the pain was bad too he mentioned the 2nd scs for my right side. Now i'm confused because when I mentioned it to him last week he said it wouldn't help my back... I dunno i'll chat with him in a month so nope I didn't have a 2nd stim put in, but confused yep. I suppose if this revision surgery help i might not need it.

I have researched Jackies stim and apparently it will only work on back or legs and not both but I'm not a doctor and i'm always surprised what can be done.

Regarding Karen's leads or paddles, that's the million dollar question? I hear the paddles are better as they are directly located around the spinal chord. I hope you hear soon, it means more surgery but if it helps you feel better....
It was a good idea to take a holiday before hand, get some heat in your bones, our summer has been pure rubbish, it's warmish here at the moment but not warm enough or sunny enough for me, this is the first year in 10 years we haven't been to the US and I hate that.

I'm in good form at the moment.... I say at the moment, tomorrow I could wake up and be like a demon for God knows how long...

My walk today was 10minutes on the Curragh with my husband and our dog.

Chat soon ladies...


Sinéad

Yayy .. you got on the Curragh then .. good for you !

I'm going to give the Hospital a quick ring as I've not heard anything yet .. and Ive had my hydrotherapy cancelled because I am having problems with the stim and the message left on my phone was .. get your consultant to refer you again after your next op ! Grumble .. I could do with some easing of my body now in water .. I found walking in the sea, just so I was off floating, helped.

Call me what you want .. lol. I have been known as Saffy as I used to do some work for a record label called Hed Kandi but Karen is my "proper" name.

Hi Karen,

Sometimes you just got to keep on fighting and ringing to get what you need, it sucks, i'd love some hydrotherapy and it's something my body would love too but getting something like that here would almost be impossible. If I only I won the Euromillions, i'd build one!
Feeling better again today but still it's the energy levels that are still affecting me. I've looked it up and apparently the affects of anesthetic can last for 2weeks! I hope it doesn't last that long.
The Curragh is great, nice wide open space, short grass, and the dog can run around to her hearts content. Lots of people running and walking there too - good for them some day I'll be back with them.

Later alligator, get on to that hospital, tell them you want that appointment and your body can't wait..... as if that would work....

Sinéad xxxx :)

I fail to understand
 

How can it be that the consultants/doctors opine the inability of the system to treat pain generated from nerve root locations regardless of the point of origin? Mine, for instance, originates from the permanently injured nerve root L5-S1 producing low lumbar and leg burning pain while having also produced spasms..... in other words a good deal of hurt. I do not understand when my surgeons placed the paddles at T8-T9 through laminectomy, resulting in treatment which runs from my waist down through my legs your doctors say "not so." How can this be?

Further, my device manufacturer rep had me program the unit myself since the pain signature and the device response are such subjective issues only the patient can provide keystrokes which meaningfully address the issues. I did not go through shocking treatments of a rep who zapped me while excusing their oops. Are you all at the mercy of the rep keystrokes on a computer? Do you not have direct input to the programs with which you are provided? I marvel at the awkwardness of the approaches, because if the reps are manipulating the computer and asking the patient "how is that?" a good deal of information is omitted from consideration.

If I sound as though on a soapbox, then I reckon I am, because pain is all to subjective.......

Nevertheless, I DO pray that each of you find the results you have sought through these hyperinvasive approaches to pain management.
I believe it has been and IS the answer I sought, now for my first complete year,
Prayin for ya,
Mark56:grouphug::grouphug:

I too suffer L4/L5/S1 nerve damage and similar to you Mark with burning pain. I'm not sure at what level my leads are placed. I know my Consultant did say they would be placed above my fusion at L4/L5. However it doesn't help my back and Rep is unable to help me in that respect. I do think that having the paddles implants is definitely a better route as these paddles are 'bedded' in and seem to work a lot better than the leads. Well from what I have read and researched.

I also didnt have the luxury of setting my own unit when reprogrammed!! This was ALL done by my Rep while I said yes/no/maybe!!! Again that would be great to do our own tweaking. My Rep uses a hand held device attached to my programmer to do the tweaking. All sounds very different to your system Mark. But would be ideal. Also having more time too. Generally I only get about 45 mins as there are always others awaiting the reprogramming. Our Rep comes from UK. Although I have been told a guy will be placed permanently in Ireland to make it more accessible .

Snap .. same sort of system Jackiey. My Nurse holds onto a box and tip taps with a little piece of plastic on the screen doing the settings. As I say, over two hours of this the other week, and nothing eliminated the sensations from my right leg and between my legs.

My family don't want me to have another operation. I can see their point as I am still having to take meds for my back so that's not going to alter.

Snap
 

All the more reason to INVOLVE the patient personally in the programming process, as I have never had to have a tweak session to resolve programming snafus, maybe because I did it myself in the first place!

Mark56:grouphug: