Spinal Cord stimulator vs Pain Pump
 

Hi,
My motivation for looking back into these options is the isolation of not being able to drive and the ensuing depression that accompaines the isolation. I live about 50 miles from my family, doesnt sound far but I only see one family member on a regular basis, my husband travels about 90% of the time.I am by all definitions , a shut in.

In any event. my body rejected the port a cath dr. S put in for my infusions.This was in year two. I had ketamine insusion for almost 4 yesrs. I dont know how many of us have been told our RSD is extremely opportunistic, but i have been.

The rejection of the port was a serious one and almost immediate. severe alloydina, edema, infection etc.

It had to be removed within a month on an emergency basis up at hahnemann hospital.
30,000 dollars to put in , 30k to take out. wow is right.

Following that,( I have cold rsd) I had picc lines put in and taken out constantly as it is near impossible to get an IV line in me. Again they had to keep coming out due to the RSD and severe alloydina and further complications.

Now I'm in my 6th year, I'm having alot of GI problems upper and lower, so I am looking at options again.

I've read alot about SCS on neurotalk, and its success. But not much about pain pumps. I have been told over and over I am not a canidate to scs for the above reasons as well as because i am full body.

Im wondering if anyone has the pain pump. I dont know how I would make it through hte surgery but with the help of my pain mangagement doctor it might be possible.

Could anyone share their experiences with a pain pump. what type you have etc.

Also, if you have scs, why did you select that over the pain pump or vs versa. thank you so much,

I appreciate any input anyone could share, cz sorry this is so long! I really do try to edit my posts and make them shorter!!!:)

My SCS experience..
 

My Dr. felt the SCS was the best route for me and really didn't suggest the pain pump, and I was not familar with the pain pump.. I had the trial SCS placed in for a 5 day trial in 4/08...it was a success as I realized it was helpful after it was removed..my implant surgery was put off and put off so many times due to the fact my Dr. felt I needed the smaller unit due to my size, which was not manufactured yet..So in 9/08.. The smaller SCS became available and was put in...sadly..it did not work for me..it actually makes my RSD mad and I can not wait to turn it off!!!!!I elect to keep it in as it was wired for both of my legs... my RSD had spread to both of my limbs by the time it was placed in so I will keep it to hopefully help with my good side as it worsens.. Take heed with the SCS.. it is a big step.. I don't really regret it due to future usage but the Dr.'s and unit managers putting it off basically cost me the chance to walk again...:mad:

hi,
I've had 2 scs and I'm ready to go to the pump. if you pm me I'll give you the site of people who have or are getting the pump. There is so much info. about it.
The pump gives you much more freedom and seems to be harder to jar out of position. I would never have the scs again. it also caused my rsd to spread.

I'll be looking for your pm.

Hugs
Mary

Pump
 

just from what I have read, I would go with the pump too....

Love
Deb

i hated the scs it made me spread and the perm didn't cover the pain the way the trial did. not to mention the added hip and back pains from it and being shocked.

i know someone who has the pain pump and they love it.

I dont even know what to say, yeah i would be mad to say the least. I dont know if it would apply at all but the tens machine aggravates my condition, is the theory at all based on the same theory? sorry if this is a naive question/ I am so so sorry for all of your disappointments with this, sincerely cz

Hi Mary
 

Hi Mary, thanks, Ive read alot about the pumps, but want to talk with those that have used it or are considering I am sending you a pm now thank you so much. cz

hey cz.

we have talked alot about it. and i couldnt do any of the things that i do with it. i have had mine since 04. and now am able to work part time. participate in the activities i do with the kids. and just be up and around. and feel like im an actual person again. having the pump doesnt stop the flairs and on a person to person basis it can lower your pain greatly. im happy with it. and would do it all over again.

im like you and have cold rsd.. no veins left have piccs all the time. so i understand where you are coming from.

pm me and we can talk more

carrie

thanks carrie, so much Ill pm
 

Carrie, thanks so much, Ill pm. I go back and forth- forgive me forgetting- I take very high doses of morphine and I have absolutely no memory left. thank you agian. i am sending pm.cz

Now these are just things I have been told through the doctors and things I have read etc. Everyone is different. When I was at Cleveland Clinic the pain pump was suggested as one of the last options to try. Now the scs I was suppsed to try but since I had 2 procedures that increased my pain my doctor felt the scs may as well or may not work if the pain has been there too long and it is in my brain too much. I think more doctors for RSD do the scs then the pump since many are not big on narcotic meds that I have seen and how many have said in the long run it makes one more sensitive to pain and needing more. Now I am not saying people who take narcotics here are wrong because at this point I have no clue and one has to get through the day in the best possible way for the best quality they can get. Just through the many doctors I have seen.
I am sorry for all you are going through and I know how hard these choices are.

Thank you smilelin
 

thank you Daniella for sharing this information from the cleveland clinic. I know this is the case with dr. schwartzman he does not belieive in them at all especially once you have full body pain. I appreciate your input. cz

http://i26.tinypic.com/2ur5n4h.jpg, for the knowledge that everyone shared in this post.:grouphug:

Hey no problem.I just reread this and I was told by my doctor before the scs was ruled out that the tens would not work for me since I can't even allow a finger touch on me. May I ask what part of FL you are in? I am back in Palm Beach county that is why I was asking. Hang in there and I understand too how this condition isolates us. I wish there were more concrete answers and direction.

i think you are both right the pump and scs should be usesd as a last resort option i think that some get these way to early when other things can be tried . i had already had rsd almost 6 years and this is when i had pump put in after i became very allergic to morphine. i dont think that it is right for everyone. i am one of those that has done everything besides Ketamine. because im not a candidate and im just not willing to risk my life for it. IMO
carrie

Hi cz...
 

Not a naive question at all!! I believe you are right in thinking the tens unit is based on the same theory as the SCS...I guess my hardest time was beng so happy after had the temp. unit in thinking it was a positive and then having to wait so long only to wake up and not have the benefit of the SCS, permanent implant.. Thank you for your kind note and for your sympathy with this ordeal... I wish you a restful evening and send gentle hug.:hug:

I have a SCS and the trial actually worked less than the permanant. For me, I have huge family support and my doctor actually changes out medicines seasonally. For instance more in winter than summer or visa versa. My SCS covers abou 40-50 percent of pain. Which is HUGE when you look at the full scale of 100%. It is a HUGE lifestyle change as I am young and was once an athlete. I have mine in my neck which is harder because it goes all the way down your back instead of just the lumbar spine. Everything worked out wonderfully and I decided to put it in. I never considered a pain pump, as my PM doctor told me the SCS was a option over more medications. I have had mine in for only 3 months, but those 3 months have been great over the incision sx pain from the implant. :)

Im glad your back.:)
 

Daniella Im not doing very well today and on my way to doctor but so happy you are back i am in orlando. I will be in palm beach from dec to april. Ill pm you toinight ok. thaks again for saying hi, cz

Hannah so happy for you
 

Hannah, Im so happy for you that you are getting some help. Also so sorry about your atheletic career, sorry about spelling today. I too have cervical and thoracic not lumbar, I know what you mean. thank you for sharing. God bless, cz

Dew
 

Dew, Just wanted to thank you for all your kindness and cheer, cz

]

Hi I am sorry that you are feeling bad. I would love to meet you oneday when your near. Please take care and hang in there.

pain pump
 

Hi, My name is Wayne, I am going to have the pain pump put in on 1/7/13. I was hoping to find someone that already has one. I just want to know the good and the bad. I had the scs which did not help with the pain. I now take Morphine orally and that does help some but I worry about becoming to dependent.

Hi Wayne, and welcome to NeuroTalk:

You might want to also visit our SCS and Pain pump forum:
http://neurotalk.psychcentral.com/forum118.html

Just click on the link above. ;)

Hello Wayne!
 

Pain Pump member references:

Here is the testimony of Bobinjeffmo's pain pump:
http://neurotalk.psychcentral.com/post701979-14.html

Here are some post references, both good and bad, to hopefully give you a realistic array of experiences:

http://neurotalk.psychcentral.com/thread144925.html

http://neurotalk.psychcentral.com/sh...945#post841945

http://neurotalk.psychcentral.com/post778075-7.html

Another thing you can do is use the "Search" feature near the top of the page in the bar that runs across the screen (3rd option from right). Type in 'pain pump' and it will bring up prior posts and discussions on these.l

I hope you come on over to the SCS/Pain Pump forum in which MrsD gave you the link.

It's great to have you!

Rae
:grouphug: