Do you have a SCS or Pain pump?
 

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
:grouphug:

I am thinking..people will be happier after reading lostmary's
 

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:grouphug::grouphug::grouphug:

Wonderful Testimony
 

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!! :hug:

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. :mad: Why? Because of the 'commitment' ! He actually said and I quote "Nope, because then you'd have to marry me" ! :eek: 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! :rolleyes:

Rae

other problems with scs please explain
 

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.

Hi abrown!
 

Thank you for jumpin on board ! :p
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.

Bumping this up!
 

:grouphug: 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!

:hug:

please help
 

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?:(

Hello Cookie
 

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
:hug:

it doesnt go into the bloodstream. try this website for info on the drug pump.

http://www.medtronic.com/our-therapies/drug-pumps/

SCS implant for RSD/CRPS
 

Jcompere CRPS/SCS implant! I just got back from my doctors after having the permanate SCS implanted 3 wks ago. I am starting to experience back pain along the leads and the implant site is very sore. I was told to message the back and implant site to keep everything from tightening up. He expressed how important it is to stretch the tissue out durning the healing process. I told him I was unhappy with where the implant was placed(I have the paddels @c2-c3) the implant ended up on my waist line Where my clothing irritates. He agreeded with me and said he was following the Boston Scientific Rep's direction for where it should go. She was worried about my bra line!!! My result is not as good as the trial when I use 2 of my programs(the best ones) it causes my right shoulder to jerk when I turn up the signal. Has any one had problems like this? According to many of you this is mild so far.
"J"

RSD and the SCS
 

Hi all if i had it to do over again i wouldnt get the scs i am very unhappy with mine it does help the pain some but i am still on the same amount of pain meds that i have always been on since i got to be the proud owner of my rsd. I remember reading everybodys posts before i got mine. Before i got the trial i told the doc that i had alot of scar tissue in my back from two previous surgeries but he said that wont be any problem at all cause i know what i am doing boy i thot what a arrogant attitude cause other doctors i had seen were all concerned about all the scar tissue. then i talked to them about haveing a nero surgeon put it in and was told they dont do it any more antheiogists are putting them all in at the hospital i was going to. well when it came time for the trial and he was trying to put it in i was yelling about how painful it was finally after twenty minutes of this pain i told him to stop i didnt want it i couldnt take it anymore. then he said well i might as well stop i cant bet it past the scar tissue boy that didnt make me feel good then he said well i can put it in this other way that will only hurt a little bit and i asked his how is that and he said thru the cottle and i asked what is a cottle and he said like i was a dumb ** well thats your tail bone so he put it it the tail bone and he was right it didnt hurt and the trial one helped the pain when i went to get the trial out he didnt show up for the appointment and there were about six people there this is a training hospital and they were there to see it removed well only person there that had ever seen one removed was a nurse and she pulled it out was her first but she said she had seen it dont many times ya just pull them out.

Well a week later with more reading about the scs problem i decided i didnt want my generator in the back i thot it would be uncomfortable and hard to charge the batteries so i tried to call him but he doesnt return calls so i had to make a appointment and drive clear down there just to talk to him about where to put the generator and i told him i wanted it up front in between the hip and bellybutton and he said ok. then the day came for the permenant one and when i was getting on the table i told him my tail bone was still hurting from the temp one and he said we will worry about that pain later lets put in this perm one first then he said on u wanted the batteries up front right and i told him yes and he well that is too much work i wil move it up some but not that far it would take longer well now it gets pinched between my hip and ribs just sucks where it is but i guess it is better than in the back boy he is lazy.
well my tail bone is stil hurting and he wants nothing to do with the pain even told me to go away and dont come back said he dont know anything about back pain and what he did didnt cause the pain problem weil it is so obvious that it did ya cant believe a word they say....well since then i had a nero surgeon take it out of the tail bone and reinstall in screwing it to the back bone so the nerve is right on the end of the wire but the tail bone pain is getting worse and i dont have a clue as to how to get it fixed. I would try that pain pump i havetalked to people that have had it and liked it especially after they found the right meds for the best pain relief.........well live and learn...Alan

Thanks for sharing all of this, Alan...
 

I'm so sorry you've been put thru all of this! It seems unthinkable that this guy would leave you out in the cold like this! :mad:

Have you thought about seeking legal counsel over this?
Or do they not hold themselves accountable since this is a teaching hospital? I feel very strongly that something should be done here.

Nobody should have to go thru what you've been thru!

Rae
:hug:

Still in, but turned off
 

Was to help knee's down to toes bilateral. It also went to my rear end and private area's. The 10th rate neuro in the country said to just get used to it. My pcp had some words back for him. It has caused it to spread to the areas it wasn't to go to. There are several links to the fact that SCS in severe cases of RSD only works for 3 hours to a few months and then is no longer helpful in all. Will post the links, if it is OK'd at a later date. Sincerely, hear4:(

SCS side effect of nausea
 

hi, my name is Sarah I am 34 years old, i am new to this site. i had a spinal cord stimulator implant put in september 22nd, 2011. It has been now 8 weeks. My history is that i had in 2005, a L5 laminctomy and was left with nerve damage in my right foot, l5 s1. i have been living in constant pain!
The SCS coverage is amazing for my leg and back pain, i have managed to wean off all my meds.
The only problem im having is that I'm suffering severe motion sickness from the stim. we have tried reprogramming 3 times. The doctor and St Jude rep keep saying its because the stomach nerves are getting pulled into the leads.
we reprogramed today two new frequencies and i am hoping that this will stop the nausea. Now that i can finally walk more then 2 city blocks i cant imagine how i have lived 6 years without the implant.
If anyone has experienced nausea as a SCS side effect please write back.
thank you.

Hello Sarah!
 

I'm hoping more people will see your post because you bring up a very interesting topic. Maybe try starting a new thread down below in the active posting and I bet you'd get good feedback.
Right now, we are up in the 'Sticky' section and I don't think too many people venture up here.
I responded to your post down below and I bet if you start a whole new thread regarding your situation, then more folks will see and respond.

It's so great to have you and I hope you can begin to get some answers soon!

Caring,
Rae
:grouphug:

What are the odds of this application becoming a new weight loss surgery? ;)

Instead of lap band surgery--people will go have the "Sarah" implant...

In all seriousness, it sounds great you're getting pain relief, and I hope they can fix your nausea problem!

Thank you, but i really wish this nausea would go away.

Nausea...
 

Hi Sarah,
I'm so sorry you are still suffering with this nausea.
A few weeks ago you were getting reprogrammed and I was hoping that would help.
What does your Dr say about this?

Congrats on being able to wean off the meds! There's only 1 other person here that I know of who has had success with getting off all meds.
That's amazing!

Rae

problems with my scs implant
 

I have had sufferd back pain for over 20 years and had have several major back surgeries. The past six years I have suffered with chronic back pain. Was placed into pain management. After many injections, it was suggested that I should consider a trial stimulator. THe trail went well and pain level wnet down. Was than scheduled and had my implant done back in Sept. Now several months after I have pain in the area if the implant I cant stand anything touching it as it causes alot of pain, I cant not sleep on my left and if I do I wake in pain and my left leg is numb. The doctors want to try and place th implant in deeper, and I dont know what I should do. I am thinking about going to local ER and just having it taken out. Has anyone had this problems?"

Hello!
 

Welcome to NT!
I'm sorry about this pain that has plagued you for so long.
How well does your SCS cover your pain?
I doubt that ER will remove the implant. They would probably have the procedure scheduled and then you wouldn't have the high expense of the ER charges. Have you lost weight since your implant was done? (pointed question I know :D) Reason I ask is because this happened to me. I had been on a bad medication that caused me to gain about 40 lbs. After my implant I didn't take that med anymore and began to lose the weight. This is when I noticed the unit began 'moving' to the surface of my skin and I thought the battery was working it's way OUT! Well, that wasn't the case. It was because of losing weight. The extra 'flesh' was melting away. The site began to get pretty sensitive. Since then, tho, I have become used to it and it's no bother now.

The reason I asked if your unit covers your pain is because if it does, I wouldn't want to get rid of it. If your Dr wants to make a deeper pocket for it to sit in, then that probably wouldn't be that big of a deal. It'll just be tender from the surgery for awhile. Hopefully he wouldn't put it in too deep because you might have a hard time making a connection with your charger when you go to charge the battery.

There are these padded adhesives (I think 'Johnson & Johnson' make them). You place them over the tender part and it'll cushion it from the outside world.

Stick around! There's plenty of support and caring people here. If you want to start a thread of your own down below, just exit out of this dialogue and click on the 'New Thread' option at the upper left of the screen.

It's great to have you here!

Caring,
Rae
:grouphug:

Thanks for the advice. No I have not lost weight. Like I stated it just started to get very sensitive. I cant stand to have even a t-shirt touch it. AS for the pain is not covering as well as it had in the begining. I have had it reprogramed twice already. The unit I have when the battery dies I need to have them cut me open again and replace the batteries. My insurance would not cover the more expensive unit. I am scheduled to have it moved deeper in on Monday but I am truly nerverous I am sorry I went this far.
Again thanks for your support and the information you supplied

I see....
 

Ok, I see where you're at with this. I can understand why you feel uncomfortable about this. I was hoping that your SCS was doing a pretty good job of covering your pain.

Down below is where the active posting is (you and I are communicating up in the "sticky's" and not many people see this). Anyway, there are quite a few Scs'ers down there who have had this problem - where their unit seems to lose it's 'Pazzazz' (?) Sometimes it's the battery getting weaker. Other times it just takes more tweak sessions. Then there are the instances where it's the scar tissue to blame. Our friend Jackie had this problem and her Dr said that the scar tissue continues to change it's form and sometimes it can 'encase' the leads/electrodes, which stifles the stimulation effect. Jackie has had her unit for a couple of years and is still having scar tissue issues. Her Dr feels confident that he can get better stimulation if he tweaks around. This is why it is necessary to be tweaked every so often. Others don't seem to have this problem tho.

Since you've got the non-rechargable unit, I'm not sure what to think. You haven't had it in very long so I wouldn't think that the battery could be dying already. HOWEVER :rolleyes: Jackie had to have her battery changed out only a few months after her implant. She had a dud of a battery. So, I guess this does happen, but I hope it's not the case with you.

Do you feel confident in your Dr? If he sounds confident in making some adjustments on you, then maybe it's worth a go. I wonder if there's a way he could check the status of your battery while he's in there.

I can certainly understand why you feel tempted to just throw in the towel tho. If it's that sensitive and painful, that would be hard to deal with on a longterm basis.

Please keep us informed of how your appointment goes on Monday. I'm curious to know what doc will have to say. We could probably learn from your experience.

I wish you well for Monday and thereafter. I really hope this will work out for you.

Rae
:grouphug:

SCS severe back pain
 

:)Hope Im in the right place .....:confused::)Hi guys, I had SCS surgery in December 11.my CRPS is in my left foot.I am still having severe pain around the surgery sites.Cant do much of anything.Still on crutches and in wheelchair.I would love to hear of fellow scs implant people.Im in UK and had my scs surgery at The Walton Centre .my neuro nurse check up is in August...any advice etc :)

NO to SCS
 

I had my first one put in and it lasted 1 year and was not getting all areas. Decided to have more leads ( I thought) put in on Dec 1,2011. A man not from Boston Scientific but from St. Jude was there. Says you are getting a whole new model. They had already started they anethesia, I wasn't going too far. Woke up with the battery pack right at my waist line. Noone came back to tell me how to use, charge, anything. January I sat down in a chair and had to move the internal box with my bare hands to sit back. Got to the point it started shocking me if it moved out of it cubby hole. Then it wouldn't shut off and started shocking me. I had it removed on May 14. My heart stopped in the recovery room 2 times due to the shocking it had done to my system. Good luck to all they work for I am happy you are blessed to have them work. Just not for me.:hug:

Hello!
Oh My! To think that some places treat their patients this way! How awful. I'm so sorry you had this experience and that you were not well-informed at all regarding the manufacturer of the unit they 'surprised' you with and then placing the battery in such an inconvenient area.

Sounds like some negligence was involved in this also. What a raw deal.
I hope you are recovered from all of this by now.

Thank you for sharing. Definitely an opener!

Rae
:grouphug:

Disheartened!
 

I had the SCS implanted almost a year ago Nov 2011. The clinical trial wasn't a very good way to assess it because you're so restricted. It seemed to help though so I went forward. Three months out I began having pain in my mid back. I originally decided to go with the SCS because of chronic pain in my lower back and legs for over nine years resulting from an auto accident. I have been on Fentanyl patches, oral morphine and lortab (all at one time) on a daily basis the past nine years. I wanted desperately to not have pain and be off medications at least partially! I wanted to feel normal.

Three months I began to have pain and ignored it because I thought my body was adjusting. after a couple months I believe around five months after surgery the pain was becoming more intense and was daily and now now overshadowing the lumbar pain I have had for the past nine years.
Somewhere around month 8 in July of this year I was on the floor cleaning up an apply juice spill and when I went to get up I felt a burning and sharp pain at the surgical site and a hot, sharp intense pain around my rib. Almost like someone had just taken a knife and sliced around my rib very quickly. After that day the pain was so intense my meds increased and my mobility decreased. Then on some days I dont'know what it is I do but perhaps some form of movement? bending over? whatever causes it I don't know but suddenly my hands up to my elbows go numb and tingle just a bit and my feet up to my knees will go numb. The length of these episodes vary the longest being around nine hours. When this happens the pain is decreased. There is a weakness in my feet and hands when they are numb and I've fallen once during one of these times. When it passes the pain increases in intensity and it's back to the same old story.

I do not know what has happened but at this point I'm ready for removal. I've simply added a new level of pain to my life as if the original lower back pain wasn't enough!! There are days the pain is so much so that I sit and cry till I fall asleep. It has brought me to such a place of depression and hopelessness unable to enjoy my life. It's taken what little sense of worth I had as a mother and wife having so much pain, being a burden on my family and not being able to pull my own weight around the house.

I called my surgeon but they referred me to boston scientific and I"m waiting for a call from them which I have not yet received.
I'm praying and hoping for the best.

"Other Issues"
 

Hello!
 

I just wanted to say thank you for sharing this. I'm so very sorry you've been thru all of this.
I see you've posted down below, so I'll post on the thread you are at.

Again, thanks for this

Rae
:grouphug:

So happy to have found this forum
 

hello everyone...delighted to find so many opinions on this subject. I had my scs implanted in March of 2012,,,yes it works for me although the pain from the surgery side effects is worse that the pain that I had it implanted to releive. I am on twice the pain meds. I had to return to work 10 days post op and work for another 5 months until I was able to leave that job...I think I may have torn stiches..the pain was unbearable between my shoulder blades. I have not worked now in 4 weeks so I am getting stronger with less pain. I would so like to talk to others who have had the unit taken out...I do feel like mybody is rejecting it....
As with others I have seen on this site...my doctors have truly been little help and I am seeking a new one.
I would NOT reccommend a scs based on my experience.
Great to be here
Johanna

Hello Johanna!
 

Welcome! :hug:

So glad you found us! I'm so sorry that your experience has been rocky and frustrating. It really irks me when I hear of these Drs who don't follow through with their patients after the implant has been done.

Many folks have had revisions and extractions, so please come on down to the active posting section below and start a thread. You will get great feedback from lots of caring folks.

It'll be great getting to know you!
If you have any questions on finding your way around or how to start a seperate thread, just holler ok!

Caring,
Rae
:grouphug:

new here I have had 2 back sugerys, now in july of2010 I had a SCS put in, It worked good 4 a while ,I had to retire in jan 2011 because my job required me to do heavy lifting & work as a deisel mechanic, now the SCS is not doing so hott, am taking norco ,cymbalta, zanaflex neoutonrin. all 3 time a day & the pain just keeps getting worse ,went to PM last thursday he gave me lidomern patches I can,t tell yet if they help of not, Dr. says my arthartis will just keep getting worse the older I get. My L5 disk is gone bone to bone all my lower back is bad Degertive disk deasese. has anyone else had the SCS not doing as good as it did? just wondering if your body will get used to it.:confused:

Hello Boggsr!
 

Welcome to the forum!
Thank you for sharing your experience! Although I'm sorry to hear that you aren't getting as much pain management as you were 2 years ago.
Boy, I can SURE relate to those 'other' pains that come upon us uninvited as we get older! It sucks! :rolleyes:

I've had my unit for a couple of years also. To be honest, I'm not sure if it's not doing as well as it did at first, or if my other conditions are starting to take the front seat. For the relief I get in my lower back and legs (Neuropathy, RSD), I sure wouldn't want to be without it, but it's kinda difficult to enjoy like I did at first with these blasted back spasms hammering at my sanity. I too still take quite a few meds, but at least I don't feel the horrible burning pain like I did pre-scs.

It's great to have you with us!
May I invite you to come join the active posting down below? Right now we are in the upper section of the SCS forum, where it's mostly introductions and information.
You'll be amazed at how many folks just like us live with these buzzing little units! Lots of great support!

Rae
:grouphug:

Help
 

I also have a SCS implanted and had to have it redone as it was to high in my mid region instead of below my knee. It has been in for about a year and a half. It really only helps take the edge off and that is it. My RSD in my left foot, ankle and calf has now spread all the way up my leg. They have talked to me about doing a prialt pain pump. I am trying to see what it is going to look like(as I am a visual person). Since you have had yours in a while are you starting to see any long term side effects??? Any information would be greatly appreciate.

Hi!
 

Hi there!

I'm so sorry to hear about the trouble you're experiencing with your scs! I'm wondering though, what your outcome was after meeting with your rep. The reason I ask is that I am getting scheduled for my trial stim any day now, and then (if successful, obviously), I too will be getting a Medtronic unit- the same as yours, I believe. However, your experience has me concerned that maybe Medtronic hasn't perfected their newest unit yet (the activeStim).... Also, I'm wondering (and will probably post a new thread/survey on the topic) where your battery "pocket" is located and if that placement is working well for you. I have read about issues w/the most common placement (high buttocks region) causing pain, but have read the same with some people with abdominal placement. So I'm trying hard to decide where I'm likely to have the best success w/the 'pocket' should I have the perm SCS implanted.

Thank you for your help, and best of luck to you!

Colleen

p.s. Sorry if I've rambled... it's a bad habit ;)

Hello tsi25!
 

Welcome! :hug:

I'm sorry to hear that your unit isn't workin up to it's potential. This has happened with a few of the other members (regarding too much stim in mid region). With some tweaking and/or revisions, some of them have been able to get rid of that unwanted stimulation in abdomen/stomach.

Lostmary hasn't posted in quite awhile, so I'm not sure if she will see this post.
Here are some posts from other pumpsters

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.

Hope this helps!
Also, I'd like to invite you to come on down to the active posting from the whole crew. Right now, we are up in the 'Sticky' section, which is mostly information and polls. Once you exit out of this dialogue, you'll see an option down below to start a new thread of your own and you'll get tons of great feedback from many caring members.

It's great to have you! Hope you stick around.
Just holler if you have any questions ok!

Rae
:grouphug:

Hi SnowWhyte!
 

Colleen,
I see you've found your way down below where all the active posting is and you've started a thread there. Good! You're sure to get great feedback, as we are a very caring and friendly group.
Please keep us updated on your thread as you go through with your trial!

It's great to have you!

Rae
:grouphug:

Hiya SnowWhyte!
 

Have New SCS
 

After two back surgeries, one with spinal fusion L4 & L5, then stenosis is L3, I continued having back pain to the extent that I could only walk about one block. If I did any activity, such as cleaning my house, I would by bent over double with back pain. Had an MRI, after which neurosurgeon told me additional surgery would be of no use and he suggested I do the trial SCS implant. Trial gave me around 95% pain relief, so went ahead with the permanent implant. Have met with the Boston Scientific tech a couple of times to tweak the settings; but we still don't have them quite right. Will need to work more on the settings to get it to my liking; BUT the pain relief is amazing. Last weekend, I went to an RV Rally at Daytona Speedway and walked around the exhibits - with NO PAIN. I did turn over wrong one night and had a sharp stinging pain around the IPG (battery pack implanted in my hip), but feel that was probably skin or hip tissue stuck to the surgery sight and breaking lose. Stimulation is still working fine. I will see the tech within the next week to have it checked and also do some more tweaking of my four settings. No regrets of having the implant as I can now:):) climb a flight of stairs one foot at a time - where before it was a struggle to make it going both feet per step.