NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   SCS & Pain Pumps (https://www.neurotalk.org/scs-and-pain-pumps/)
-   -   Anyone got 2 SCS? (https://www.neurotalk.org/scs-and-pain-pumps/149657-2-scs.html)

irljenn 05-06-2011 04:54 PM

thanks chemar!!

I forgot about that part!!
Sophie i think if u page down on the messages you will see all about me discussing my brand new now buzzing unit!! i got my nevro in december and it works fantastic on my back but i am sure u have so many questions so i cant think how u can pass ur details to me yet but please know I am here to answer any questions you have as this nevro system it is very new they only started to do them in december and we were probably both in the same hospital at the same time indecember !!
looking forward to chatting soon and hope i can answer all ur questions

Mark56 05-06-2011 11:32 PM

Thank You Chemar and all
 
It is good to see us striving to help new folks, especially when they may seem to be at the verge of receiving equipment or treatment similar to your own, while it is also most helpful to have the wisdom of our moderators to point out the beneficial rules which preserve the safety of this environment [Thanks Chemar].

All will work to the good, and before we know it Sophie will be among the senior member group!!

Applause,
Mark56:hug::hug:ZZ

smae 05-28-2011 04:44 PM

I have two sets of paddle leads, but they split the wires to connect to the same battery so I did not have to have a second battery placed. So technically I have 1.5 systems. :)

Sophie_ 05-28-2011 04:54 PM

Hi Smae,

Thanks for this I believe the paddles are better than leads, how are things working for you? I'd love to know if you don't mind me asking. Im almost certain i'd have to have a separate device in and the Dr plans to use two different types of SCS.

All the best,

Sinéad :)

smae 05-29-2011 01:43 AM

Quote:

Originally Posted by Sophie_ (Post 774472)
Hi Smae,

Thanks for this I believe the paddles are better than leads, how are things working for you? I'd love to know if you don't mind me asking. Im almost certain i'd have to have a separate device in and the Dr plans to use two different types of SCS.

All the best,

Sinéad :)

Actually, I haven't had a great experience with my SCS journey so far. My trials (both of them) were amazing and gave me 99-100% pain relief. Best 4 days of my life.

The permanent, on the other hand, has not worked. I can feel the stimulation, but I also feel the awful pain. It doesn't cancel out any part of the pain message in my brain.

My neurosurgeon has given up, along with my pain management doctor.

BUT... I am in the middle of appointments at Mayo Clinic. My neurologist there is NOT willing to accept "guess the SCS just doesn't work for you" and she is working on setting up an appointment for me to meet with someone who focuses on neurostimulation at Mayo. Hopefully they can help me try to figure out why this isn't working for me.

So as of right now, my SCS are both turned off. They aren't working. But finally there is a little glimmer of hope that one day they make work as intended and I may get some pain relief.

I'd like to hear more about your experience so far, if you care to share. I've been away for a while, so you may have already posted it elsewhere.

Sarah

irljenn 05-29-2011 03:16 AM

Hi Sophie

Never answered your question about the cushion well believe it or not it was created and made by our Mark! its called an "Inspri" cushion go to www.insprico.com and there is a demo video . This cushion got me through the 23 hour journey to california this year and i also used it in college anytime i went in and was great for getting through the exams and not that this happens much but I cannot sit on restaurant chairs for long so this helps me stay and enjoy a few more glasses of vino!. It looks like your carrying your laptop not a butt cushion, my kids still think its my laptop case!!. it also has a hook so i just put my crutch handle through it when i am trying to get around. I also found that because its not too thick it does not make you sit up too high that you would not fit under the restaurant table. There are 3 cushions available I emailed mark what i needed it for and he advised the best one. If you want you can try mine before you decide as I think us Irish ladies need to do a meet up. We could all meet for coffee somewhere in the middle so as not too have you in agony by the time you get there!!

Hoping you all have a lovely sunday !! going to make hubby a breakfast or try to stand long enough to do it!! its time to try and do something for him!!

xxj

Saffy 05-29-2011 07:53 AM

Am surprised .. at my initialy assessment at the pain clinic I was firmly told that the stim would NOT in any way help my back pain.

Sophie_ 05-29-2011 02:29 PM

Scs
 
Hi Sarah,
I don't mind talking about my story and you'd proably find a more informed post somewhere else, im very wrecked toady, the pain is and i'm like a demon.

In 1995 i had an L4-5 discectomy and after getting through that which was very tough going, I eventually got my life back and led a happy normal life and anything I wanted to to do i did. Then about 5 years ago the same pain started again and I met with varios doctors and had nerve blocks, rhiztomies and nothing worked, basically two doctors told me that my pain was in my head which in all fairness was a load of rubbish.
I then heard about the SCS and only then did I feel I'd get the help I needed. I had the trial which unike you it didnt work at all but the Dr wanted to go ahead anyway, since then i've had good results with my left leg pain but my back pain is still very bad. amy Dr is considering putting in a second SCS for the back pain,

I'm very sorry to hear your problems haven't had any solution and please God they will, I believve the Dr in the Mayo clinic are very good.

I hope you're coping with your pain and it isnt getting you down too much.

Kindesr regards,

Sinéad xxx











Quote:

Originally Posted by smae (Post 774580)
Actually, I haven't had a great experience with my SCS journey so far. My trials (both of them) were amazing and gave me 99-100% pain relief. Best 4 days of my life.

The permanent, on the other hand, has not worked. I can feel the stimulation, but I also feel the awful pain. It doesn't cancel out any part of the pain message in my brain.

My neurosurgeon has given up, along with my pain management doctor.

BUT... I am in the middle of appointments at Mayo Clinic. My neurologist there is NOT willing to accept "guess the SCS just doesn't work for you" and she is working on setting up an appointment for me to meet with someone who focuses on neurostimulation at Mayo. Hopefully they can help me try to figure out why this isn't working for me.

So as of right now, my SCS are both turned off. They aren't working. But finally there is a little glimmer of hope that one day they make work as intended and I may get some pain relief.

I'd like to hear more about your experience so far, if you care to share. I've been away for a while, so you may have already posted it elsewhere.

Sarah



All times are GMT -5. The time now is 12:15 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.