Thought I'd start off with a poll.

Do you have a SCS or Pain pump?

Share your experiences also.

It is multiple choice and it will show results of who voted.

Hi all,
Hope this finds everyone doing well today. We just got out power back on. Been without heat, water, tv, internet for several days now. Good to be back with everyone

I'll start with my story for those that don't know me. I'm Mary and I've had rsd for about 4-5 years. I got my first scs over 2 years ago. I had the trial and after 3 days the surgical pain went down enough that I could get out of bed. I put shoes and socks on and went out. I had a cane to help me which was better then my walker. A month later I had the perm unit implanted. The recovery was really bad, and it took almost 4 wks before I wanted to get out of bed. I never really got the relief from the perm unit as I did the trial. I kept having the scs (stim) reset and I never had any luck with it. About a year later I noticed that the battery, which was placed in my butt, had started to turn around and it was hurting when I wanted to sit, etc. well the next dr. did an xray to see what he had to do, and he discovered the leads had pulled out and were somewhere else. So he replaced the complete unit moving the battery to the side. I knew something wasn't right, but as the dr. passes you over to the company rep after surgery, I didn't know for sure what was going on. I woke up one sunday nite, went to try to move, and discovered that I was soaked in pus which was pouring out of my side where the battery was. Long story short, ended up in ER, then surgery, then a nursing home. It was the worse experience in my life. Never again. In surgery, they had to remove the scs as the infection had gone up the leads to my spine. I don't think this would have happened if the dr. would continue to see you after surgery instead of passing you off to the comp. rep. who talkes over the scs side of things.

I swore I would never have another surgery and it took me over a year to decide that I really wanted to have my life back. I was on enough pain meds to knock out a horse, (of which I have 3 lol). I wanted my life back so bad that I started looking for things that I could do. I had been studing the pain pump for quite a while, doing research and talking to many pple who had one. Finally I decided to go for the trial.

It was the best thing I have ever done in my life.

The trial was 5 days in the hospital with an internal cath into the spinal fluid and an external pump. I woke up from surgery sleeping on my back. No pain from the surgical site. THey started me on Morphine, but it turned out I was allergic to it. THey were giving me zofran to stop me from throwing up, but guess what..I'm allergic to that also. (this is why the trial is done in the hosptial. they have to know that you are ok with the meds.). THey switched me to diluidad, which is more powerful the morphine, but less side effects and my life changed in that one day. the pain was almost gone. I could touch my feet and legs and walk without pain. even my butt was doing great. I didn't want the trial to end, but all good things must. It was 2 months before I could get in for the perm. THey kept me in the hospital for an overnighter to make sure I wouldn't get sick again. No problem. back a little sore from surgery, but I was up and walking without much pain. By day 3 I felt so good that I started ordering some scrubs as I'm going to go back to work as soon as I get the ok from the dr. The one thing I have found out about the pump is that you may have to search for a distance to find a dr that will do the pump. Why??? I don't know for sure but I have my theories. With the pump, you will be working with your surgeon/dr for the rest of your life. It is a commitment on your part and your drs. part. It's not put the unit in and leave, its monitor the pump, try different things in the pump so that you can get off the oral meds. I have horses and I want to ride again. WIth the scs I couldn't ride again, have to worry about the leads pulling out. ( of course they did anyway). with the pump, there are a few things I can't do. Bunge jumping. (darn it lol) and jumping out of planes. besides that I can do almost anything I want.

I know this is long, but I did want to explain how the pump works. You have a resivoiur that is implanted under your skin. Mine is to the right of the spine. to that is connected a cathater which goes into the spinal fluid in your spine. The dose of meds that you recieve is 1/300th of an oral dose. As this doesn't go thru the rest of your organs, it doesn't affect you like oral meds. I don't think thru a fog anymore. I can laugh at jokes because I really understand them again. Life is clear and brighter now. You can tell that I'm happy with it. I just wish I knew about it before and had done the extra that it took to find a dr. that would do it. None here would. They all hated it and said no no no. I found one in another state 3 hrs away, and it was well worth it to have my life back.

Any questions...I'll answer them Have a good evening
Hugs
Mary

note than mine!!! I have the SCS..in since 9/08... Trial went fine..believed I was a candidate..permentant implant put in...not able to with stand the vibration of it..causes much pain..can not wait to turn it off.... and it caused spread of my RSD.... Leaving it in in order to help with good leg, it's RSD affected now too... but all in all..I was never given a choice... pump or SCS... leaves one with a sore back.. hip pocket and some limitations... I won't be bungie jumping, Mary.... sorry.. and SCS rep's are not to be found now!!! What the heck...

Good rest everyone and thanks for listening to my woes....

KS

Oh Mary!
You have inspired many, let me be the first to say!
I too have horses and am so grateful to have met you as you were getting this life-changing experience. I prayed and prayed that the pump would be a success, so you can ride again.
Thank you for sharing your experience!!

I have done the trial SCS and will be getting the permanent put in on Feb 24th. I knew as soon as they turned the unit on while in the O.R. that it was gonna work for me. I have nerve damage to both legs and the 'tingling' covered over the burning pain I've been dealing with for upwards of 5 yrs.

I asked the Doc about the pain pump and he flat-out refuses to do them. Why? Because of the 'commitment' ! He actually said and I quote "Nope, because then you'd have to marry me" ! What a guy.
He's pretty arrogant. If it weren't for the fact that he's so good at what he does, then I'd definately be looking elsewhere.
I'm up against the wall with this, so I will submit to it and pray for the best.

I'm anxious to hear of other's testimonies, good or bad. I feel very strongly that people need to hear both sides of these. It's a very invasive and expensive procedure and alot of these docs (mine) seem to think they are a dime-a-dozen. It is a hard decision to make, but Like Mary says, we just want our lives back. !
That isn't too much to ask now IS it!

Rae

Hi! I have had my SCS for almost a year. It works well for the pain in my foot and leg. Although it does that I am now feeling lots of pain in my back around all three surgical sites. I had the battery moved because it was not comfortable in my mid backon the right side. It is now above my waist line on same side, but know it sticks out worse and tons more pain than the first site. I have an appointment the 24th. to discuss the possible moving or removing or what ever the doctor thinks. Will see and let u know the status of it.

Thank you for jumpin on board !
I'm sorry you are dealing with this pain at your incision sites.
This is a big concern to me as I will be getting mine implanted on the 24th (same day as your appt) and I have heard several others stating the same thing.

PLEASE keep us updated ! You outta start a whole new thread on this issue ! I'm anxious to see what your doc has to say about this.
Well, anyway, I will keep you in my thoughts and prayers and hope something will improve so you can continue to get the pain relief from the SCS.

Truly Caring
Rae

I have had 2 scs surgeries both causing 90 to 100 day flare ups. I will never ever forget how much pain the scs surgery and programming had caused me for the rest of my life. they never worked. during the trial i might of achieved 10% reduction in pain at most. my doc would not give me a pain pump without trying the scs first. the dr.'s get a nice bonus check for every scs they put in from the company they use. Advanced Bionics,ANS,and Medtronics compete against each other for business. I had advanced bionics put in twice. i have had several opinions since then and the pain docs say advanced bionics is their first choice and medtronics is awful(at least for the last 8 years or so) but they love medtronics pain pumps(this might be cuz its the only programmable pain pump made on the planet).

as of 2009, the new standard during a trial is 75% pain relief or you dont get the scs put in. it used to be 50% pain relief. about 50% of scs's are not being used after one year of use because it doesnt help them anymore. i think that is why they want 75% pain relief now.

i know very few people that scs's worked on but for them it allowed them to keep working or go back to work so it was worth it for them.

i am currently in trial for pain pump. if this works, i will get the scs taken out because the surgeon did not put the generator in deep enough so i battle sores from the generator trying to poke out of my skin.

There are SO many new folks coming to this forum with their experiences, I thought I'd bump this poll up to the top hoping more will take part in it!

Thank you everyone for sharing your experiences!
It is such valuable information!

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 hlps others with neuro pain?

I am SO sorry to read what you are dealing with !!
Here are a couple of suggestions that may help you get better responses, as I'm afraid not many will see your post here, since it is tagged at the end of a different thread.
I would encourage you to start a new thread here at the SCS forum and it will stand out more...... That way, you will be apt to get more responses...
Just ask if you need help in how to start a new thread. At the top left side of the page is the "new thread" to click on.

Also, here is the direct link to the Peripheral Neuropathy forum, click on:

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

The PN forum is very active and you may get good feedback there as well regarding your nerve pain.
Also, I will send a message to a member here who has the pain pump and hopefully she can give you some input as well.

Hang in there! You certainly are not alone!
Rae