[cookieb40]

I’m a 21 year old male that has a severe form of Neurofibromatosis that is rapidly increasing that causes tumors to form deep in my body all over that causes pain. I’m loosing all function of my arm and leg due to it being nerve pain and damage. I was an athlete but now I am bed ridden. The docs want to put in an intrathecal pump in me to help with the horrible pain and because I’m on very high doses of oxycontin and oxcycodonne. I’m scared to have it in because I’m a skinny guy and I’m wondering if it will even help much or what kind of pain meds are the best to be straight in blood for anyone with horrible nerve pain? I pushing to do this hopeing i can get back to a somewhat normal life and wondering if it helps others with neuro pain? What is a SCS? Is it like a pain pump?

[Koala77]

Hello cookieb40 andd welcome to Neurotalk, although I'm sorry to read the reason that brought you to us.

I'm not sure if you've seen it yet, but we do have a sub-forum dedicated to SCS & Pain Pumps within our Medication Forum. Here's the direct link: http://neurotalk.psychcentral.com/forum118.html

Do go and have a read, and maybe copy your post over to there as well. You just might get more replies there than here.

[Rrae]

Originally Posted by cookieb40

I’m a 21 year old male that has a severe form of Neurofibromatosis that is rapidly increasing that causes tumors to form deep in my body all over that causes pain. I’m loosing all function of my arm and leg due to it being nerve pain and damage. I was an athlete but now I am bed ridden. The docs want to put in an intrathecal pump in me to help with the horrible pain and because I’m on very high doses of oxycontin and oxcycodonne. I’m scared to have it in because I’m a skinny guy and I’m wondering if it will even help much or what kind of pain meds are the best to be straight in blood for anyone with horrible nerve pain? I pushing to do this hopeing i can get back to a somewhat normal life and wondering if it helps others with neuro pain? What is a SCS? Is it like a pain pump?

Omg my heart is TRULY bleeding for you!
I saw your first post - you had tagged it on to the end of a different thread in the SCS forum......(I believe I saw it on the thread regarding the 'poll')
I was afraid no one would see your plea for help so suggested that you start a new thread of your own.....
Koala provided you the link to click on to get to the SCS/Pain Pump forum.
Click on that link (she posted it right above this post).
When you get there, start a thread just like you did here. The "New Thread" button is near the top/left side of the page...
I've also sent a PM (private message) request to one of our members here who will gladly share her (very good) experience with the pain pump. She has not been online since I sent her the note, so she has not seen it as of yet... but she'll come around.....
Please don't lose hope!

I think you are getting fragmented info, which is probably not helping your stress level! The Pain Pump does NOT deliver the meds via your blood veins, which is the neat thing about it. It pumps the meds directly into your spine plexus targeting the nerves, so the strong meds go 'straight to the source', so to speak,....
The SCS (Spinal Cord Stimulator) is a completely different ballgame. It is a battery-operated unit in which electrode (leads) are placed in your dorsal column (spine). They send 'electrical impulses' to the nerves and 'interrupt' the pain signals from reaching your brain......Instead of feeling pain, you feel a tingling sensation (stimulation).....
So, in essence, by posting on the SCS/Pain Pump forum, you will see many other folks who have shared their experiences and you can get much more detailed information regarding these units.....

When I responded to the post you made, I encouraged you to visit this site as well, since you have severe nerve pain (Neuropathy)....... so you did good by posting here, and there is MUCH info regarding neuropathies, however there are SOOOO many factors and different types of nerve issues....I'm not sure where to point you without potentially overwhelming you. Please hang in there.

Others will see this and give some input regarding neuropathy (Neurofibromatosis - yikes..... that's a new one on me!)......

Just keep checking here on this thread you started......also, I hope to see you back over on the SCS/Pain Pump forum as well.... I'll be watching for a new thread if you start one over there ok....

Truly Caring
Rae