Post Revision SCS surgery
 

Hi all,

Just thought i'd let you know that the revision scs surgery to adjust my leads seems to have gone well, the pain that has been recurring the last few weeks and plaguing me like i'd never had any surgery at all seems to have thankfully settled down.
It was a day surgery with a general anathestic, I was awake for the first part of it and once they got the right frequency or voltage or what ever it is they look for they put me off to sleep, the next thing I woke up in recovery all warm and dopey.

I'm currently resting ver comfortably at home with the latest Karin Slaughter book and TV, my husband is fantastic and look after me so well.

Love to all,

Sinéad :) :hug:

Hip Hip
 

Hooray!! : D

Mark56:grouphug:

You take care Sophie .. fingers crossed that this settles things for you.

I LOVE Karin Slaughter .. have read every single one of her books.

Post SCS Revision surgery
 

Hi guys,

Thanks for your messages, I'm very, very wrecked at the moment, so tired, so exhausted but the back ache is almost gone and the soreness is still there? How long does it take the general anathestic to go through your system, I haven't get the energy to do anything except sleep and read more of the Karin Slaughter which is up to its usual standard of excellent!

Night night kiddies...... i'm off to do nothing and sleep some more or read more or read the news paper, i might try to get out of the house tomorrow.........

Sinéad xxxx:hug::grouphug:

Give Anesthesia TIME
 

Hi Sinead, every human is different regarding the response and recovery from general anesthesia. Some bounce back fairly quickly, and others take a matter of weeks to regain the usual perkiness...... I fit in the group of the latter. Take it easy, slowly, doing things carefully because your anesthetized responsiveness to stimuli may be somewhat on the slow side. No doubt it is one of several reasons why driving after surgery is discouraged..... I have no doubt at all.

:hug::hug::hug:zzzz
Mark56

Hi Mark,

Thanks for the reply, I know you're right but I just want to be better now! More time, more sleepies, more little walkies, I'll be grand in a few days.

Night night xxxx

Sinead :grouphug:

Little Walkies
 

The home we sold was laid out such that one could do laps walking a figure eight from room to room. I nearly wore a path taking little walkies to build up until I could graduate to the out of doors......:D
Mark56:)

Little walkies
 

I guess I could do that too and leave the dog at home! LOL poor Tigger might get terribly confused.

In all seriousness though it's a very good idea but once it's not too cold or wet a 10 minute walk will do me the power of good and hopefully give me some energy! Tigger, our boxer will walk bedside without a lead and then I'll let her run before we come in. :)

Gonna try go back to sleep it's 3.44am here!

so happy my dear friend is recovering slowly but surely. Becareful out with the dog that he does not jerk the lead and cause you a set back! i think the only lead you should have in your hand is your ipod lead and just take baby steps this week!!

i will give you a call later on have a meeting at 12 pm re future of ofJenna!! lol

You're an impatient young thing ... can't think who you remind me of !? LOL xxx

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:

My unit is programed much the same. Of course mine is also a Medtronic unit. My last trip to the doc they again asked me about my satisfaction with my unit. I did not see my doc again this visit and I am finding this tiresome. I am not a medical bigot, my primary caregiver is a PA-C. HOWEVER when I drive 200 miles one way.... I am not sure bu am wondering if they are moving to a different company. My unit will shut its self down in a few more years so I am exploing other brands and patient satisfaction

i have the same problem. tech change the program. once they change program you can not get the program back. still waiting on moving leads.
thanks ronh :grouphug:

Tech change!!!
 

Ron, Saffy, Sinead I am beyond myself with wonder why the providers of care, the techs who strive to program the units leave the patient out of the loop. YOU, the patients, are the people who KNOW what occurs within you body with each different stimulus. WHY DON'T THE TECHS DO AS MINE DID AND ASK "WILL YOU PLEASE SIT IN FRONT OF THE COMPUTER AND MANIPULATE THE CONTROLS AS I DEMONSTRATE SO AS TO DETERMINE WHAT WORKS BEST FOR YOU?" Why, why, why NOT!! Is it that Boston Scientific is the only provider out there willing to allow a patient to address their issue since they understand subjectively what is occuring in the affected body from inside the suit we call flesh and blood????

I repeat and challenge any vendor of such devices as to their process when the patient is to respond to a "How is this?" or "How is that?" as the tech taps on the controls. Where is the consideration of the patient, some of whom must drive or be driven hundreds of miles or kilometers in order to achieve a tweak!?!? Goodness sakes, I have not had to experience a tweak in the year my implant has been active. I have openly wondered whether this phenomenon is the result of my technician asking me to manipulate the computer to establish the four programs in my unit. Is it not possible? Why fly repeatedly between the U.S. and patients far removed when if they were more personally involved in the process they might actually receive a greater benefit?

Why?

I am truly baffled by the responses on the issue of tweaking again and again involving a tap to a screen or device in an interrogatory exchange between patient and technician.

Sorry for the rant,
Just baffled,
Mark56:eek:

Mark I think it is perhaps that most of us have different units etc. I know u told us that yours dosent include wires etc attached to your unit. Maybe that's why you can sit at a pc and fiddle around with the programmes. Mine is attached to wires etc to the programmer. That's then connected to a little box the rep has and tweaked that way. Maybe some of ours are a bit outdated I dunno!!

I must admit, after two hours of .. "How does this feel compared to the last one?" I put my head in my hands and said .. "I just don't know!" I was so frustrated.

This is my exact stim and the control programmer

https://lh4.googleusercontent.com/-5...jc/s288/IT.jpg

The Nurse uses the wee stick to tap onto each electrode and change the settings ...

Different, Outmoded, or Not
 

My thoughts rendered last evening hopefully provoke discussion between patients and techs or nurses inquiring whether a more personal approach to the programming sequence might not prove the better. Just think of the hours of professional time potentially saved because program setting might more personally involve the patient, the frustration avoided and patient satisfaction potentially achieved due to the personal input since all of this is SO subjective.

Imagine.......

Imagine........

Could be a good remedy,
Mark56:grouphug:

Imagine if....
 

Hi guys,

Imagine if there was software on your own computer that could tweek our SCS's. Use a usb connection to connect to our unit, to connect to the software, this software is connected to a central unit the Technician is responsible for and you could work over the computer to tweek your device. Why not, it would save so much time for everyone.

You could do it sitting at your own kitchen table and you wouldn't have to travel hundreds of miles sitting in a car or train or bus that you're not able to do in the first place. If something wasn't working then you could visit the technician.

If someone doesn't have access to a computer, they could do it with a relative or their local health care provider.

I wouldn't mind but the technology exists, it's not new and it isn't rocket science.

Imagine as Mark says...

Sinéad :)

SCS Adjustments.
 

It may come down to money. If each patient was allowed to do the fine tuning to their scs units maybe the ins. companies would look at this in a way that the co. rep/tech is not needed so the expense cost should go down in price. I am sure the Med companies that make these units may look at this as a liability issue. They know that this should be something that most folks could do them selves and would gladly do it. It is all about the bucks and how much they can charge the ins co each time it needs to be adjusted the first year 5-6-7 times X's $150.00 per on the low side X's a thousand a month. This is big money for the med companies. They need to justify the cost of the rep/tech.

Their are a lot of 10 year old geeks out there that could do the fine tune adjustments without any problems for a pop or burger.

If you own a smart phone and have to download apps. on the phone it is very similar to programming a scs. You just need to take your time the first few times until you feel comfortable doing it.

Just a thought and my 2 cents.

That's very very true hurting, it is all about money, at the end of the day that's what it comes down to and the problem with that alot of time it's poor old Joe Bloogs that suffers when he shouldn't have to.

Sinead