Abbie Im so glad you finally have a date for your consultation!

Just go with the flow with the trial and if it benefits you then its onwards and upwards... I really hope that you get the relief you so deserve!

Keep us updated Abbie

Take care

Jackie

I've looked at all of the information they gave me in the packet but nowhere does it address the question of what kind of sensation does the SCS send through the spinal cord and body...

Is it a electric pulse sensation like a TENS Unit?
Is it a constant electric sensation?
Is it a vibrating sensation?

I ask because I can feel the smallest of electrical sensations. Electric blankets and heating pads drive me crazy---OUCH!!!

I can even feel the electricity just before the motor to the furnace or air conditioner kicks on.... OUCH!!!

If I go into a building where a machine is vibrating.... I can not stand it!!! It sends the vibrations right through my shoes and into my body---OUCH!!


I'm sorry for asking so many questions...
Thanks,
Abbie

Howdy Abbie-

Sensation depends upon the unit..... If you travel to the UK, you may ask to receive a Nevro device which provides relief with no sensation. It is not approved for use in the US yet.

All brands of which I am aware in the US provide a kind of a tingling, shivering sensation. I have likened my Boston Scientific to the sensation I experience when shivering, and in winter season, it tends to heighten my feeling of being "cold" and I wear extra stuff or cover up when at home so as to try to be less "cold." I feel that is a pretty good trade off for the pain I was enduring before!

Now..... as to your questions..... isn't the gainful imparting of information one of the very basic of missions of this site? You can Never ask too many questions, AND, remember when preparing for your next doc appointment to write questions down to take them with you both to address things you want to know from the doc and to assure it is not a quick "thanks for coming" style appointment where you feel "but if I had asked..........."

Have a blessed weekend,
Mark56

No such thing as too many Q's! The more the better. It seems like Dr offices tend not to give very much info. At least that's how it was for me. It seems as tho they become complacent because they are always doing this procedure. I think they kind of forget that this is something brand new to us and somewhat bizarre! I spent SO much time online trying to find out stuff about the SCS - boy was I glad for this site! Before we got this little forum, the RSD folks were very helpful in sharing their experiences and suggestions.
I am ever grateful for that.

AS far as the sensation... they can program so many different types of settings. And to boot, you will have the option of turning your amplitude higher or lower. To me it kinda feels a little bit like it does when your foot or leg has been asleep. That strange tingling when it wakes up.
Like Mark said, it's a wonderful tradeoff from the burning pain. And knowing that you have control over how much stimulation you get, makes it all the better. Sometimes it starts feeling a bit aggravating, so I turn it way down. In the mornings my pain level seems to shoot higher, so I turn UP the buzz.
Most of the time tho, I don't even realize it's on. And like Jackie has stated, it's VERY soothing at the end of the day to put my feet up, relax, and enjoy the stimulation.
The trial period is the perfect opportunity to play with the settings and decide which ones work best for you.
Since you are so sensitive to electronic transmissions, you'd probably do better with a lower setting and with the amplitude/pulse set at low. It can feel like a soft 'buzzing' with the pulse speed higher, or it'll feel more like a 'thumping' if you turn down the amplitude/pulse width.
Kind of an 'acquired' taste so to speak, but ANYthing is better than the constant pain.

I almost wanna say it's pretty similar to the TENs unit, but I haven't used one of those units in a long long time, so not really sure.

How do you fare with the TENs unit? Is that type of stimulation too intense for you?
Do you describe your pain as burning?

I can't handle the TENS unit for even a minute!! I played with all of the possible settings and levels with all possible combinations.

With the TENS unit on it feels as though the part of my body where the pads are.... my body is going to burst into flames...it feels as though there is blood running down the outside of my body and my body CRAMPS up so very BAD!!


I describe my pain as---COLD BURNING PAIN!!! To describe it I say it feels like I've been left outside in below zero temperature then going inside and immediately taking a HOT shower. That BURNING, TINGLING sensation that hurts so much you can barely handle being in the water.

Another description I use is---you know that feeling you get when you hit your thumb with a hammer... that instant pain but it never eases or goes away.


Abbie

Shucks, Abbie The way you describe your pain - I'm so sorry!
That sounds like a level 10 acute pain to me! I sure hope it's not constantly like that. How do you cope!

I know that 'icey/hot' pain you describe. It's a terrible feeling, sorta like being on the INside of my skin tryin desperately to crawl out!

I sure hope something can be done about this. Your hypersensitivity certainly might pose a problem. I'm anxious to know what your Dr will have to say when you tell him this at you upcoming consultation. I hope there is a way to work around this.

Im so so sorry to hear that you have just painit certainly sounds horrendous!!

My SCS is a St Judes....now the sensations I get when I turn up my SCS is similiar to when you would sit for a while and your leg goes 'dead' that when you stand up you feel it like pins and needles. When I was getting my stim programmed there were a range of different sensations. I remember there was one that was more a 'thump' 'thump' 'thump'....sensation which didnt help me at all in fact it drove my pain worse!!!.....I know there are lots of different sensations with my unit, some fast and some slower which makes the actual sensations feel different to one another. Ive mine on the 'pins and needles' sensations as thats the one I find more comfortable.

I remember prior to my implant I did have an opportunity to use a TENS machine on my back for a trial. Well that just aggravated my back and pain in my legs, so I had to give it back, I got no relief whatsoever. But the SCS is certainly a small improvement on having nothing.

From what you are saying Abbie Im wondering if you will be able to withstand these sensations especially if you say how sensitive you are! BUT........thats the beauty of having a trial first before they actually plant the permanent one!!!

Good luck and let us know how you get on

Jackie

Thank you for understanding...[quote=Rrae;804335]That sounds like a level 10 acute pain to me! I sure hope it's not constantly like that. It is CONSTANT!!! How do you cope! I cope the best I can with medicines and I sleep A LOT actually I think I am more or less passed out. If I forget to take a dose of medicine I get really sick.

I know that 'icey/hot' pain you describe. It's a terrible feeling, sorta like being on the INside of my skin tryin desperately to crawl out! Exactly!!

I sure hope something can be done about this. Your hypersensitivity certainly might pose a problem. I'm anxious to know what your Dr will have to say when you tell him this at you upcoming consultation. I hope there is a way to work around this. I have a fear that he's going to say that it's not going to work. or that it will add pain. [/quote]

Burning, burning, burning..... oh how well I know burning, and that sensation of not wanting anything on my feet or legs. Not being a skirt kind of guy myself, I tend to wear shorts at home ALL of the time, and less when in the privacy of our room with door closed. The first thing I like to do is get the stuff off of my feet. Pre-SCS the burning was a searing burning which along with spasms which lingered LONG after my fusion brought me to tears just way too much. I was the guy who used to sing with the worship team and now lay on the pew in church, head on my wife's lap and tears rolling down my cheeks [and this was not due to a heightened spiritual experience].

Icy burning is a sensation I do not know, but I am glad you and Rrae connected on that. She is one close supportive leader in this subforum and we are blessed, all of us, to have her, with caring, wit, smilies which pull a grin even out of the dead, and information beyond the far reaches of her left pocket.

I pray for you, Abbie, that you do find the right and special treatment which will bring peace to your body, mind, and spirit.
Caring,
Mark56

I think I know that icy burning feeling. Most of the time it's just plain old burning for me, but in the colder months, I think I get what you're describing.

I'm so sorry that you are having so much pain and really hope that somehow you can find some relief, Abbie.