welcome
 

Now that is a great story!!!!
I am so happy for your relief from pain.
Don't forget to go easy...let yourself heal so everything stays in place.

all my best
Johanna*
:D

Hi Mags!
 

Thank you for sharing your story!
I'm so happy for you that you are getting such good pain relief! Usually there are a few tweak sessions necessary to get it all right.

I sure know what you mean about those stairs! Going UP is total agony!

Again, thanks for sharing.
It's great to have you with us!

Rae
:grouphug:

I have an SCS.
 

I have an SCS for Chronic Back Pain. I also have nerve damage in both legs as a result of bulging discs. I had a rhizomoty and my NS wants me to get more of these to try and get rid of some of the pain. I recall that it is painful, so I really don't want to go through any more of these. She wants to do fusion surgery after the rhizotomies. I am so unwilling to go through all of that. I will do my best to deal with the chronic back pain. I also have CRPS in my right shoulder as a result of two failed shoulder arthroscopies, one in which they cut out the A/C joint (resection). A rep from Boston Scientific told me at my last re-program of my SCS, that they could attach electrodes externally for my shoulder problem. Only problem is that is a W/C case unlike my back problem, and they don't even want to pay for medications or trigger point injections. Is anyone aware of the external SCS applications? Thanks for any info.

Best Regards,
Dave

Hi Dave!
 

Welcome!

I'm sorry you've had to go thru all of this, and the CRPS TOO! That is quite a heavy dose of pain you've been dealt.
How is your SCS treating you?
That's an interesting question regarding the external electrodes. Would this be sorta like a TENS unit that you wear off and on? Work Comp can surely put a wrench in things - like you said, they won't even cover your meds. :mad:

Well, I'll refer your inquiry to the wonderful group of SCSers. The active posting is down below. Lots of great support! Hopefully you'll get some good input.

It's great to have you with us. Feel free to stick around and let us know how things go for you.

Caring,
Rae
:grouphug:

And Awayyyyyyyyy we go.......
 

to the land of external electrodes. I gotta wonder Dave, whether the externalities are suggested for hookup to an internal generator..... or just what is in mind of the rep?

I have used an interferential stimulator which was work comp prescribed and paid relevant to my lower body pain. It worked well, but as an external gizmo, was not robust enough to run longer than twenty minutes without need for a recharge. What a drag. Plus the wires were forever getting hooked on this and hooked on that.

Lastly, I hired a well known work comp lawyer who pushed my case very well until we found resolution with the insurance carrier. I would have sunk without counsel.

I will keep my eyes and ears perked in case info on a procedure such as yours comes to mind.

Blessings,
mark56:)

welcome
 

I just want to extend a welcome for you...please read all you can and there are many here who have great advice and real concern.
I am sorry for your pain.
The first rhizotomies I had were a breeze...they did them with out putting me under
a change in doctors sent me on the SCS path.

keep us updated
Johanna

Dave,
Please try to avoid the surgery. The American Pain Society reported less than 20% ( I hope I have that number correct) really reduce pain. Most times there is little change. Perhaps you could call the home office of Boston Scientific and ask about the external electrodes. How can a Workers Comp company deny you medications? Go to your state insurance commissioner with written denials from the WC carrier and beg for help. It has worked in Delware and Michigan in the past for my clients. So far I haven't had to use them, but I certainly would do so. I am so sorry about your pain and then the insurance difficulties on top of that. Too much stress. drcandy

My SCS failed immediately. I have been in agony since the implant and had it removed 45 days later. I will have problems for the rest of my life now in addition to my neuropathic pain which the SCS was supposed to help.
Having the stim was the worse decision I ever made. Had the docs told me there was a chance of permanent damage to my spinal cord, I never would have done it.

Dawn
 

Knowing disclosures as I do regarding medical procedures there must have been some disclosure to you regarding the risks involved by the principal surgeon, the anesthesiologist, the surgical facility in which the procedure was performed..... In the very least the psychological profiling which would have been mandated prior to the procedure would have been filled with questions determined to ferret your potential for realization of risks inherent with the procedure, its potential outcomes, your expectations.

Gently realizing you are, as reported, living life with intractable and horrible pain compounded by injury it is so very unlikely you could have been admitted to the surgical suite as the patient of the hour had you not signed off to statement after statement through which you were informed of possible outcomes. This I have lived so very many times as a patient, the language of the dire consequence potential risks is very nearly burned into my mind's eye.

Things sometimes turn out very much for the bad affecting us. I, for instance, bear permanent nerve damage which will prevent me from doing a good many things I used to know as taken for granted. For you, I so very much hope somehow, in some way, at some time, a means to resolve your situation will become apparent and doable.

I care:hug:

Hi Mark........I know of the risks for any surgery that you sign off for. What happened to me was atypical and related only to the SCS. The docs have no idea what happened or why. ..I went home and vomited for 12 hrs. Unknowingly this displaced my wires, and the unit when turned on was stabbing me on the sides of my chest. I began having shaking chills, then I felt like a furnace.
My hands and feet felt as if they were being smacked on concrete. .........I stopped using it after a week when my neuropathic pain got worse........the tech and I saw the doc, found the wires migrated and he sent me home only using the one good side. ..............but it just got worse every time I turned it on which was only a few more times. ...then I started having problems with weak legs and walking.......................so after 45 days it was removed. .......I am living with those symptoms, which were all from the SCS.................my issues are not the normal risks you take with any surgery........I could understand a stroke or cardiac event.........but not this......the horrible unrelenting muscle spasms are the worst

Started a Thread under your name for You DAWN
 

I truly can relate to your pain and disappointment regarding the failure of your SCS. Even so, you are posting in a sticky thread which is meant to be used for general preserved info on specific topic, such as this one which started off with a Poll, which device does a patient have, SCS or Pain Pump. Please click here
http://neurotalk.psychcentral.com/sh...940#post954940

Hopefully, you will be transported thence to post away regarding the issues with which you wrestle.
May all of the folks gather around you to support you in this situation.:hug:

Hi Dawn...
 

I just wanted to say "Hi" and to thank you for sharing :hug:
I am so very sorry to hear what you've been through and still going through. I wish the doctors could give you a better explanation to what may have gone wrong. I've heard of cases where the patient's body completely rejects the unit, as it is foreign to the body.
But what you describe almost sounds as tho you became very ill right after the implant and you had a fever.....I'm wondering if the doctors ruled out infection?
I completely comprehend the migrated lead bit. I also had that problem, and you're right, it causes stabbing pain, or in my case a very painful 'pinching' feeling, as tho I was being bit by a huge insect.

I'm hoping your body will heal in time and the nerve pain will simmer down. I've battled neuropathy for 6 yrs and boy is it a B-@#&*%!! Over the years since I've had my SCS tho, I've noticed the neuropathy has been getting less and less. Not sure if it's because of the unit, or if this would be happening even if I wouldn't have got the unit.
Please stick around. There's plenty of caring souls here and you've certainly been through the mill. If you click on the link that Mark provided, it'll take you down to the active posting where more people will see it. I know you'll get alot of feedback, and perhaps someone has been thru something similar.

Glad you found us, Dawn :hug:

Caring,
Rae

Mark
 

MARK....
I have not been able to figure out how the site works. Don't know the difference between a sticky thread and a post.
I just use the reply button to talk to people..............
DAWN

Rrae
 

You have been very kind Rae.......I have been off the site for a while. I am in CT and we had a major snow storm, lost power for 3 days and froze our buns.
Mark says I am in the wrong place and should not be posting in a sticky thread. ..............I would like to stick around and talk and read.....I tried to figure out a way to have an email sent when there is a reply to a post I made, but that doesn't happen.....
I have to click on my statistics, then click on my posts one by one and scroll down page by page to see if some one has made a reply......
I can tell you know what you are doing..........
Any advise on the site, I'll take.........
Dawn

Hi Dawn!
I see you've started posting down below in the thread Mark created for you!
Just holler if you have any other questions!

Rae
:grouphug:

Butt placement
 

Hi ABrown..........I had my implant in my butt. The whole time it was in place I could NOT sit down. Having a BM was a big deal..
I believe the thinner you are the more of a problem it is.

Good Luck........Dawn

Good Lick Rae
 

I will be watching in the future, Feb 24 date, to see how well you do. I will take all my good, safe and lucky vibes and send them your way. ......
I don't want what happened to me happen to you.

Sending my hugs for the future.............DAWN

Hi Dawn!
 

You are so great to chat with! :cool:
Just wanted to let you know that the post you responded to is from a few years back. I had my implant in Feb of 2010. I see how tricky that must've looked since the 24th of Feb is right around the corner! :p

I'm doing great with my unit! It covers the horrible burning neuropathy/RSD in both legs by about 70%. I still take pain meds for breakthru pain. I'm just so very sorry that you had a bad experience with yours :(. You deserve the best possible pain management out there and I hope your doctors are working with you to find other means of pain control.

Thanks for the visitor message! And thanks for accepting my friend request! :hug:

Talk soon!
Rae
:grouphug:

Holy Moly Rae
 

Geepers Rae, I just found this post by you. I feel like an idiot........I need to look at the dates on the post........glad you are NOT having surgery this week?
Dawn G

Cut yourself some slack, girl! :D We ALL do that! You are not an idiot :cool:.
I'm glad I'm not having surgery either!! :p

:Ponder:I am new to the forum. I stumbled across this community researching lead migration on my Medtronics unit. My unit is supposed to be used to relieve intercostal nerve pain damage. I had a thankfully non-cancerous tumor on my rib cage removed and when the surgeon removed the tumor he severed a bundle of intercostal nerves (nerves that wrap around your rib cage and chest wall). The pain from this is similar to a constant runners cramp (if said runner were being stabbed in the side of their lung with a really long, sharp dagger) that doesn't go away ever. This makes breathing very difficult and laboring. Without pain control I have to breath in short gasps so I sound like a perverted breather on a crank call.

I had my SCS implanted in Oct of 2012 and after the horrendous recovery process I felt strong enough to tackle the long, painful and arduous process of discontinuing my narcotic pain meds. :eek: I went through withdrawal for about 3 weeks and I honestly would have preferred being shot in the head rather than go through that again. After 5 months of a rather pain free existence I found myself suffering from gastrointestinal issues - bloating, diarrhea and vomitting - as well as migraine headaches (of which I have never experienced before), side and back pains, all over body itching, cramping and a feeling as if I am having my insides bbq'd. I went to my neuro/pain doc today who had x-rays taken only to show that one of my leads has 'slipped' and dropped. The Dr. said that this is what is causing the burning/stinging electrical pain and itching. The gastro pain is due to the remaining lead's vibration being so close to my stomach and intestine area. The prognosis is to go through surgery again and have the leads removed and repositioned. I am not happy about this but I was wondering if this has happened to anybody else. Please advise. :confused:

Hello Sirmommy!
 

WELCOME to the forum! :hug:
You've certainly come to the right place :). You'll get alot of great feedback and support here.....and we'll probably learn from YOU as well :cool:

Thanks for your introduction and the description of what you've been thru and are still going thru. You've been through your share of tests and trials, that's for sure.
Regarding the lead slipping, oh yes, been there also. :rolleyes: In my case, they actually just pulled the bad lead out and I'm doing just fine with only one lead. Does wonders for covering over the horrible burning neuropathy/RSD in my legs and lower back.

You'll get much more feedback if you start a new thread of your own. That way people will see you easier, rather than being tagged at the end of this thread up here in the top section of the SCS forum. Just exit out of this dialogue and you'll see a 'New Thread' button on the left side of the screen. Tag that, title your thread and copy this post that you just made and hit 'submit'. Then you'll see your thread down below with all the others.
This is such a great forum and I'm glad you found us!

Sometimes new folks have a hard time finding their posts. If this is the case with you, this SCS forum is listed under the "Medication & Treatments" forum in the main menu. You'll see it listed as a 'sub-forum'.

Many MANY have had lead migration issues, so you'll soon realize you are certainly not alone in this!
It'll be great getting to know you!
Just holler if you have any questions or need help in finding your way around.

Rae
:grouphug:

Still new, still confused
 

I came here hoping to find people that have also had SCS implants - mine was put in Nov 30, 2012 - and see if they're side effects and complaints were the same as mine. I just don't know where or how to post . . .

Haven't even dine the trials yet
 

I have not even done the stim trial yet. My cardiologist says you can't implant one with a pacemaker, which I need to have done. I am concerned about even doing the trial, and feel like my doc is rushing it. I just don't like the idea of electricity from another source running in my spine. He won't even do a pump trial unless I do the SCS trial first. I am even more concerned after reading so many posts where people had complications after it was inserted. I would really rather try the pump because I know what has worked (I've been dealing with this for 11 years now. I had better care in 3 other states, but have nothing but problems since I moved back home. Does anyone have any thoughts on this?

Totally understand!
 

My pain doc is quite arrogant. He started his own series of clinics and surgical centers. I have signed releases for my EP cardiologist, who happens to also be an engineer and has developed loop recorders for Medtronic (like I have). I saw my cardio on a Thursday afternoon and asked if my pain doc had called yet, he said no. The next AM I saw my pain doc & he was irritated that my cardio hadn't called him back. I know he didn't try Thurs. because mu cardio asked his RN if e had called, so he must have tried Fri. AM before he saw me.

Andy, I appreciate you sharing your experience with the SCS. Another part of the problem, is my blood doesn't clot. Well it eventually does, but it takes 2 hours of infusions of clotting factors. This means it has to be done in a hospital which my pain doc doesn't like (he can't use his surgical center). He wants to use a drug that works in some cases. Luckily, I found a really good hematologist, and he won't approve the use of that drug until I take a challenge dose of it. Basically, they make you bleed, time it, then repeat the cut give the drug and see if it works or not. This will slow down the whole decision-making process, which is what I need. I am a pharmacologist/toxicologist and I don't like how he is rushing me to do it, I need time to think and research it for myself. Re: the pacemaker, my pain doc says he does it all the time. He also uses drugs in his pumps that are not approved my Medtronic (you can request approved drugs though). I trust my cardio more, and he has been around quite awhile, and is very respected. I got lucky to see him as a patient; if I hadn't had the asystoles, I would've had an intern or fellow. He is very interested in whatever is going on with my heart because it is unusual to be out as long as I am. It's one of his areas of research, luckily for me!

I did see the poll results and was surprised to see ~ 80% success rates. If my cardio signs off on it & the heme comes up with a plan to stop the bleeding, it will be a different situation. If I did the trial, and didn't clot, the blood has no place to go in the spinal cord, and the result is paralysis. I'm not working now, and really want to get back in a lab, that's part of what scares me about the whole situation.

Again, thanks Andy! :cool:

Hello Vaxn8
 

Welcome to the forum! :hug:

You've come to a great place for support and information!
If you are feeling rushed into this, that's a huge red flag. Too many Dr's are pushing for these units way too soon. These are supposed to be considered when most other modalities of pain management have not worked.
You bring up a good point about the pacemaker. I'm not sure on this either, like Andy says, it's two completely different situations.
Doctors make a ridiculous amount of money when they do these implants. On top of the usual surgery costs, they get a huge kickback $ from the manufacturers. In some cases it is very clear that 'greed' is the driving force that has them pushing the patient for these too soon.
I'll bet my bottom dollar that the reason your Dr doesn't even want to consider the pump is because it is a HUGE commitment between him and the patient. When I inquired about the pump, my Dr said...and I quote "NO Way will I do pain pumps because that means we have to get married" . Meaning of course, the refilling of the reservoir and the constant monitoring it would take.
On the contrary with the SCS, in most cases the doctor inserts the unit and leaves the follow up care to the reps of the manufacturers.

I usually don't spout negativity like this because there are SO MANY 'Good' healthcare providers who truly DO care about their patients, such as what Andy shared. I too am very happy with my SCS of 3 yrs. The soothing stimulation (like a cat purring :)) does wonders in covering over the horrible burning neuropathy in both legs. And as you read thru the threads down below where the more active posting is (we are up in the 'stickies' right now) you'll get a wonderful scope of testimonies, both good and not so good experiences.

This is a huge decision and it is your body. Please don't let ANYbody pressure you or make you feel rushed.

It's great to have you here! If you want to start a new 'thread', just exit out of this dialogue and you'll see a "New Thread" on the left side of the screen to click on. That way your post will be seen much better and you'll get a lot of responses. As it is right now, we are posting on the tail end of a different thread.
Just ask if you have questions on how to get around. People are very helpful and caring here at NT.

Caring,
Rae
:grouphug:

Thanks for all the info guys, it really helps! I've been dealing with this since 2002, so I am at the point where everything has been tried more than once. When I was treated with fentanyl & hydromorphone, I was working at the best place to do good research. I moved home to help my Mom & Dad, because my dad's alzheimer's was getting bad. I'm glad I was here for his last 2 years. The problem came with the docs here, they stopped all treatment and told me nobody in this state would treat like I was treated in Baltimore. I tried a methadone clinic because i thought it was my only option. After 5 years of dealing with the hosp & docs that stopped my treatment, I finally looked for another place, which is where I am now. My work comp people approved the first appt, then un-approved it the day before, so they haven't covered a thing with the new clinic, which started July 7th and has involved many appts.

My cardiologist said exactly what you said, that it was my body and not his choice. He uses threats of discontinuing transdermal fentanyl if i don't do stuff on his schedule. He's not even using half of what I was on, but it at least dulls the pain somewhat. I'm really not sure what to to or if I need to switch docs again. I do know I'm not going to put up with horrible treatment as long as I did with the other system. I just want to get back to work, I'm going crazy not doing anything productive!

Dazed & Confused
 

Hello All, new here and recent Medtronic's Cervical SCS this past June 19th. After getting over feeling of having been truly un-prepared for the post-op realities and I'm now still in the midst of healing and my STIM is off due to the device shocking me in the battery area. After several times of trying after each few more days of healing time, still left with having to turn it off. My trial went very well so needless to say this has been very disappointing.

I have had several Nerve Ablations to lower facet & sciatic nerve, Ulnar Nerve Transpositions both arms, left arm twice, ACDF to c5-c6. Permanent damage to left arm=Neuropathic Neuropathy. Needles to say I am struggling with all the different narcotics etc. SO I had what I still believe Realistic Expectations with the SCS but not to have gone through having implant only to had it off and still on just as many medications and now dealing with this.
I am trying to stay hopeful that Drs. can get things on track but I am abit down with all this.
Any helpful words?

Hello Leia!
 

Welcome! :hug:

I am so sorry to hear that you are going thru this, especially when your trial implant went so well.
What does your Dr have to say about this? It sounds as if you've probably gone back for 'tweak sessions' with the Reps, hoping to get coverage where you need it. In many cases, repeat visits are a necessary part of the healing process. At this point tho, I understand your frustration, especially regarding the shocking sensations at your battery site.

I know you will get good responses on this from our members here. Might I suggest that you begin a new thread of your own so that your inquiries will be seen better? Right now, we are posting up in the 'information' part of the forum.
If you exit out of this dialogue, you will see a 'New Thread' tab on the left side of the screen. Click on that and your thread will be seen down where all the active posting is.

Meanwhile, while you wait for responses, you can do a 'forum search' regarding your battery site. The search tab is on the right side of the screen. Just type in key words such as 'pain at battery site', or 'shocking at battery site'. This will bring up posts from past discussions on this. Hopefully this will help.

It's great to have you here! Stick around - there are many caring people here. I hope that you will soon have your new unit up and running. Just holler if you need help finding your way around or have other questions.

Caring,
Rae
:grouphug:

Surgery a week ago today
 

It's too soon to tell if it worked.

scs
 

Hi all, I am new to this site. I Had the scs perm put in November 23, 2013 near a month ago. There was a complication during the surgery. Turns out I have what they call a difficult airway, it took much longer for me to wake up. My gums swelled up from the gas, making my teeth hurt for two weeks. Oh those first two week were the worst. I had no recliner and no bed with a remote to help get me up. I had extreem pain with every move I made. I go to sit I hurt I go to get up from sitting or to get out of bed it hurt, I tried to play a video game and the movement of my thumbs caused pain to increase.

I am not at all sorry that I had the sergery, even though only part of the unit is working, it has cut my pain level down consederably in my hips and legs. I go to get tweeked this Thursday, and I hope she gets this worked out.

I really think that they should give us the software so we can do the tweeking ourselves. The rep. seemed to be in a hurry. She said my back was still swollan. I don't know what that had to do with anything, they did'nt do surgery on the lower part of my back where I need it to work. I want it to work like the trial. Its been near a month and I have been taking ibuprofen and the swelling has gone down. Still it is only partly working. The sergon said if they don't fix the problem I will have to go back to see him.

Ouch I will, but I don't want to go threw that extra surgery pain again. I am going to have a hospital bed and recliner brought in, because just maybe, my getting in and out of bed that first two weeks may have moved something. Just a thought for anyone getting ready to have this scs put in.
.
Also I have read so many post about the pain from the battery. Even the sergon said most people complain about the pain from the battery. That has never been a pain problem for me. Not even after the sergery. They put it just above the right hip.

PS, is anyone losing any weight with this unit???
:):):):)keep smiling everyone

welcome
 

hi vbeck
oh what awful complications from surgery....I am amazed your doing so well at a month.

I like the things your surgeon says and yes you could have pulled a lead out of place (migrated). I do so hope the programing goes well....make them go over all programs....make them take the time or complain.

Like you I have my battery in the same place with no problem at all...also like you I thought I was gonna rip in half getting out of bed....doing anything actually...and wiping my butt (please excuse my bluntness) brought tears to my eyes. I still think I hurt too much and I am at 18 months post op. Mine is located at L7...where is yours located?

After your surgeon...your rep is the most important person....get a relationship going...communicate well...My reps changed way too much.
Mark56 has programmed his unit---follow his threads.

all my best ...stick around---lots to learn here

Johanna

Hello to everyone! I'm sorry for all of your issues. I hate that there are many stories about pain and suffering though each one is different. This is my story.

I was dx'd in 1997 with MS after having many problems with symptoms from the time I was very young. I couldn't tell you what and when my first symptom was, but I can tell you that I believe that it all started with the mumps when I was 4 or 5 y/o. after that I can remember complaints of what I described as headaches behind my left eye when I was about 7 or 8 but after that I believe I had foot drop in high school and am undiagnosed case of optic neuritis when I was 18 which was dx'd at the time as a migraine when I went to the er. At the age of 19 and 20, I had problems with trigeminal neuralgia, and then at the age of 26,I started having another optic neuritis episode and numbness in my left arm and leg. I was dx'd with MS in 97. Years later after several relapses I started noticing what I called an aching in my legs that I I was given tramadol for and that worked for me for many years, but as my pain increased my dosages increased and by the last increase my neurologist decided to send me to a pain management Dr. I've always had a fear of becoming addicted to pain medications and I explained that to my new Dr who immediately told me about the pain pump and I was ready to get it put in immediately, but was told that I'd have to do the trial first so in the latter part of November I had the trial done where I had to go to the Dr's office at 7 am, which btw, is attached to the hospital and had the trial done and then transferred to the hospital where I stayed and was monitored by the nurses for the rest of the day and was sent home by early evening. That day I had the trial done and by the end, I knew that it was for me, because I had not been without pain like that for a very long time. The next week I went back to the Dr's office and he put the referral in for the surgeon who was to perform the surgery and waited for them to contact me. Once I got the call, they had an opening for the following day so I went in and told them that my only wish was to have my pain pump put in for Christmas. By this time it was already mid month and so he sent me to the front to see if he had anything avail prior to Christmas and by a miracle there was an opening for the 23rd of December, so I was scheduled. I went in to surgery the early morning of the 23rd and I got out of the hospital on the 24th and I was taken to my mother's house where I spent that evening and the next day with them recovering. The only problem I have had from the surgery is some weakness in my left leg along with some pain in my hip. The Dr's believe that it was just due to swelling at the site where the catheter was placed at the base of my spine and gave me steroids to help reduce the swelling. As of date, I believe that I've experienced a relapse of my MS since the surgery because I've had some other things that have crept up including some vision problems, ringing in my right ear and more weakness and sensation issues in my right leg this time. As for the pain, it increased after the surgery but I called my pain management Dr who, unlike the rest of you whom have had problems finding a Dr that would manage your medications after your surgery, mine is the same Dr that referred me to the surgeon who did the surgery, so that once the surgery was completed, I could go back to my original Dr and have him so all of my fills and manage the pump itself. Anyway, back to my story, I called my Dr and he got me in within a couple of days and he increased my medication by 20% and said that I should expect to start noticing something within a few days and several days later, I did notice that I could go longer between my methadone doses so that I can begin to start my withdrawal process from the methadone. Currently I'm on methadone, Lyrica, percocet, and now the morphine. My hopes are to be able to reduce all of that to only taking what I need to take to cover any brake pain that I may have. He told me that if I found that I needed another increase in several weeks to contact him again and he would get me back in and increase my dose. I'm currently on morphine in my pump and if things continue to go well, as stated earlier, I'll continue to withdraw from the methadone and then I can hopefully get back to my life! I'm disabled due to the MS, but at least i can enjoy what I was enjoying before this pain got to the point that I needed a pain pump. I'm a huge fan of riding motorcycles and I have a 2004 Harley Davidson sportster XL1200C which I can't wait to get back on and I am also a lover of horses and I enjoy riding for pleasure, so I'd love to be able to get a chance to go riding again as well. Btw, I'm glad to have finally found a group of people who also have or are considering to have the pain pump. I'm a member of several MS pages on Facebook and have yet to find someone who has a pain pump. It'll be nice to be able to share experiences with you all and to hear each of your stories as to how you all came to your decisions about having it done. Seems like my Dr from the ones I've read so far, it's the only one to have offered it as a first choice instead of offering the scs as a first option. I'm glad I chose the Dr that I did as well, because he is not on my insurances list of Dr's so I decided to go out of network in order to see him, so I'm glad I did! Seems to me that a lot of little things went right in order to lead me to this miracle! I truly believe that this is my miracle!

I don't have the scs, but if you're still having problems with the sensitivity, and haven't had the surgery to get it implanted deeper, you may want to try the lidocaine patches. I used them for my back to help with some pain issues and though it didn't seem to work for the deeper pain, it did make the surface skin numb and may help you with your problem. Just a thought! Hope this helps!

Hello Sissyt!
 

Welcome to the forum! :hug:

Thank you SO much for your testimony! There are people who come here looking for information from other members who have the pain pump, so I know this will be very helpful!
Congrats on your very successful implant and a great doctor also!
I will include some links to other pumpster's testimonies:

http://neurotalk.psychcentral.com/post1028850-5.html


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.

It would be great if you would start a thread of your own down below where the active posting is. Right now we are up in the 'stickie' section and not many people will see this.
Simply exit out of this dialogue and when you first get to the SCS/PP forum you will notice a 'New Thread' tag at the top left side of the screen.

You've had a life-changing experience and I hope others can read about it too! :hug:

It's great to have you here at NT! Feel free to ask questions if you need help finding your way around or for anything else we can help you with. I'm sure we'll have a lot to learn from YOU as well!

Caring,
Rae

Intermittent and/or cycling stim
 

After several years experiencing Failed Back Surgery pain, I sought a pain doc who recommended SCS. I've had a Medtronic Restore Ultra with a 5-6-5 paddle at T10 for about two years. The first day it was on, everything was exactly like the trial, with constant stimulation. The day after it was turned on, stimulation started to cycle with my pulse. When the pulse occurs, the stimulation disappears, then returns. This happens, obviously, at my pulse rate. Nothing that the Medtronic reps can do -- in the way of electrode selection or adjustable electrical parameters -- changes the situation.

Additionally, I can be absolutely motionless and have the stim change dramatically.

The Medtronic reps say that they have never heard of this before.

Has anyone else experienced it?

Hello jsturges!
 

I've had RSD for 4 years, I did everything....Blocks, Therapy, Meds. And none of it was worth it. Especially the with the type of work that I do I can't risk being drowsy while I'm operating a piece of equipment.

I actually just got the perm SCS put on this past Monday (June 16, 2014). And it's awesome for me. I got the Boston Scientific Spectra. Apparently its a new model. They did the Paddle instead of the lead because I'm a big dude and the paddle would fit better. The pain still sneaks through every once in a while but for the most part it's pretty ok. And I'm more mobile than I thought I would be since having the surgery like 5 days ago. I'm not running marathons are other crazy crap but it's pretty good.

how delightful
 

to hear of such a great result for you.....!!!!!!

Welcome and thanks for the input.

Be careful while you scar in....give yourself the time to heal even if you want to do more.

Oh just wait and heal....it gets so much better as you do....

I am so delighted for you

HB