Rare,

Thank you for your quick response. The scs was placed for trial on Monday. If I look up or down, the frequency increases. I can't tel if my fingers are still numb, if it is the buzz sensation, or a combination. My occupation involves computer usage. If the permanent is the same, I will have more sleep but I don't know that I will be able to work. I want to tell you more, but hurts to even type on the touchpad. Am I doing something wrong? I want this to be my answer.

Thanks.

You're doing just fine, Kristy!
I understand the pain, so don't push yourself.
As far as the increased stimulation when you look down, like Nanc said, it won't be near this sensitive when you get the permanent. Keep in mind that you aren't sutured in very well for this trial. When you look down, you are simply pulling on the leads, thus the increased stim.
If/when they install the permanent, the leads will be anchored in much better to the dura within your dorsal column. Or, even better, he may want to do the laminectomy. This will surely secure the leads in and there won't be so much 'give' as what you are currently experiencing.

Lead migration is very common, there's no denying that. It's imperative that we mind the post-op restrictions until the leads have a chance to scar in.

I hope your pain eases up by morning! If it's too painful to type right now, feel free to sift thru alot of the previous posts and threads. Lotsa good info to be found. Feel free to ask anything you'd like. No such thing as a silly question.

Rae

Before I had my trial - I too was very worried about the buzzing feeling...and if that would be better or worse than the pain. BUT after my permanent implant, and self-programming, I have found just the right amplitude and frequency - that now I actually LOVE how it feels. For me it is this nice, gentle massaging feeling, and I too have gotten to the point where most of the time I forget that it is on

As for the jolts...I have a thoracic unit, so can't comment directly on the neck moving issue, but I can tell you that there is MUCH less jolting with the permanent, due to both better securing of the leads, AND eventually scarring in of the leads. When my unit was first implanted I had to change programs every time I changed position. Now, I rarely change the program at all, as the leads are no longer super sensitive to my norma movements.

Hi Kirstie,

You're very welcome to the forum and all of us here are going through this tortuous pain and trying our best to cope and unless you're in this pain people don't understand so you'll get tons of support here if and when you need it.

I was reading your post where you said you find it difficult to type. I'm using an iPad and I found this app called "QuickVoice" and basically you speak and it types, it's not that expensive eiher I think it cost me €3 so about $4. I'm still getting the hang of it and I reckon I'll need to speak slower. You'd probably still have to make some changes but you could then copy and paste it. I think you'd have to select the recording to email it but I've copied it from there! There is a free version too but I don't think it allows you to convert the recording to text. It might be worth looking at if you have an iPad.

I'm still reading your other posts but I wish you the very best of luck and like you want my life back.

All the very best

Sinéad :hugs:

You dont say where you are from? Do you mind telling us.

In Ireland and the UK we also have another SCS called a Nevro and there is no sensation from it at all. I had to have my Medtronic SCS out because it wasn't working properly for me but now I'm waiting to be called for the Nevro SCS and I can't wait, when the previous SCS worked it was fantastic the relief I got from it.

Stay strong and focused and you'll get there.

Sinéad xxx

How interesting that app for the iPad......I will definitely check that one out. As when I type on my iPad the predictive text comes up with some gems completely off topic to what Im writing

BTW Sinead why did your SCS stop working, was it faulty or was it that you just werent happy with it all, sorry I just cant recall it?!

Hope you are having a good day

Jackie

Hi Jackie,

That app (it's called Quick Voice) is pretty cool alright and it works, you need to speak a little slower and speak clearly, I guess it would have a problem with something like my Irish name. Then you send it to email as text, send the email to yourself and it comes back as text. It would be really useful for someone who has trouble typing or maybe eyesight problems. Right now it's quicker for me to type but then I'm a good typist, I work in Admin.

I'm replying to your other bit privately as the SCS wasn't the right one for me.

How are you getting on? How are your pain levels, I'm taking a serious amount of meds 156 a week and I hate every single one of them, I can't understand why anyone would intentionally want to take any form of Oxy! The side effects are truly rotten.

Nice chatting to you and keep in touch, I look forward to any news you have.

Love Sinéad xxxx

Hi Kristy,

I'm new here, and soaking up any information and experience I can find! Thanks for asking some of the questions/concerns that I've had also. I hope your trial went well and you experienced some pain relief!
Jan