Hello
 

I just signed up and am very glad to see the info on this I have had three surgeries in past three years around the c4-c7 area and have had bad pain to return after each I have a Dr. to see Monday about the SCS unit and if it will help me. I have pain in center of neck and it goes down both shoulders and arms and all of my Doctors from before have said there was nothing else that could be done so for the past 6 months I haven't had any pain meds and no longer leave my house. I just got a new neurosurgeon and he advised the SCS is the way to go, another pain management doctor said they don't work and I don't know what to do. I hope to find something to help , life has been really bad with nothing and no one helping with the pain.

You must be worn out from dealing with the pain with no meds. I've cut down on mine a LOT and I still feel drained by the amount of emotional energy it takes to try and keep from taking a heavy pain killer in the knowledge that it may help disassociate myself with the pain.

In saying that, I've had a bad couple of weeks and given in .. and spent most of the days in bed or moping around the house .. that's not a life.

I think you are a definite candidate for a SCS .. and although it wont take the pain away, it could distract you enough to be able to cope better.

I'm out on whether it works or not, as I had mine implanted in May this year and have yet to be able to use it as the coverage isn't right and they can't put it right without another operation. I was given a choice, either opt out now or try a different lead.

I feel that the sensation I am getting (but in both legs, not just the one) could benefit me ... therefore I'm giving it a go, despite all my family not wanting me to.

Hello WDT!
 

My physiatrist aka pain doctor is a board certified fellowship educated physician who is most conservative in his selection of patients who present as candidates for SCS. He works closely in association with well known board certified surgeons who perform SCS implant with what in the jargon of the business are known as "good hands." My pain case originated from a car wreck in 2005 resulting in many surgeries. Pain was relentless and the SCS option, the so called "final option" according to my doctors was offered in March 2010.

I went into the consideration of yet another surgery with much trepidation. Would this work? Could this work? Could it cause other troubles with which I could not contend? Since my issues were related to permanent nerve damage affecting the lower half of my body, what if it was worsened?

I researched and read like mad..... everything I could find. Spoke with some patients who had received implants. Began to feel more and more convinced. I knew the situation was basically a three step process once I decided to go forward: (1) a psychological evaluation to determine my stability and expectations, (2) a Trial Surgery in which leads would be placed into my spine at about T8/T9 for my issues [different placement for your cervical scenario], and (3) if the Trial of the product lasting a week was successful, further steps to be considered by an Orthopedic Surgeon whose certifications include implant of such devices and ultimate permanent implant surgery.

The psych eval went well, and I was pronounced a viable candidate. The Trial Surgery was performed by my physiatrist after which I was elaborately taped down to allow the leads to protrude through my skin, run down my back, and connect to a trial computer package similar to that which would be embedded in me if it all worked. Leaping to the end of the Trial, I did NOT want the Trial Leads removed because the release from dramatic pain had been SO successful. During the trial I continued to take pain meds, so the device was handling the over the top pain I felt constantly, as I was not willing to be fully medicated.

At last on 30 June 2010, I was permanently implanted with the Boston Scientific Precision Plus SCS- not a clunky unit at all. It had worked well during Trial and it has served me well since the implant. The surgery was accomplished on an outpatient basis, and I spent about 12 hours or so in hospital registering, prepping, in surgery, then in recovery- zoom back home after that with my wife driving.

The sensation which occurs in my lower body disrupting the pain signals which remain nevertheless is as though I am constantly beset with chills. I would much rather have the chills than PAIN. In August 2010 I commenced withdrawal from all of the pain medication I was consuming, and succeeded fully withdrawing, to this day fully off of pain medications as I use the SCS for all pain management, even pain spikes. The SCS never cures your pain cause, and the pain you have suffered will continue, although masked and managed hopefully by the SCS.

Would I do this surgery again knowing what I know now regarding SCS..... in a heartbeat.

Hoping the best for you,
Mark56:)

I hope all goes well and it has been a very draining 6mts I have had to go to the hospital twice only once again they try to give me pain meds.The first time I filled them but soon as I went to a doctor I have always got well you are addict and I just stopped everything it has made a grown man cry as they say and after reading the posat here and research I think this SCS may help I am unsure about a phsy elval I did see 2 psychiatrist in past and they both have advised that I have a real need for pain meds and recommend it the only thing you could say bad about the report is they say I am very aggressive as I told them yes I am cause I research everything and ask a lot of questions and doctors seem to get very upset at that.
I do want all the info I can get I really feel for all about the pain I am nervous cause this pain management doctor is new and in another state.

I am glad it helped you it is no fun "pain" I don't know why mine hurts so bad the last neurosurgeon said muscle and nerves are pulling across the rods and bone that was put in and surgery was not going to fix it , after a doctor accused me of being addicted to the pain meds I said nope I will stop them the only thing the pain is 9x worse and now i really don't do much but lay in bed or on the couch which isn't a life and the scary thing is now my eye sight and coordination seems to be effected I think the pain plays a part. So I really hope the SCS helps just unsure what makes a person qualify for one and what one feels like. Thanks I really hope it plays a success for a long time for you.

Utterly disgusting for a doctor to say you are addicted to pain mess when it's them that prescribe them initially!! Most of us are "addicted" to flippin pain mess as sometimes it's the only way we can function. By that I mean stand up and walk.

Nuances to language
 

Hi WDT, my own physiatrist wrote to my file that I was Dependent upon the pain meds he was prescribing. Now while learning of the dependency issue and feeling low about it, I understood through the file the report he was truly rendering to Worker's Compensation Insurance, and the two judges who have worked my case, and it is this---- My patient Mark cannot live life even partially well without continuing pain medication prescription, therefore dependent upon them; however, I have hope he will do well on and through the SCS therapy so as to perhaps wean away from the meds.

Once I put my doc's language into that context, I knew he was working to persuade the insuror to allow my SCS treatment. My doc knew I did not want to be forever dependent upon pain meds, and he was thrilled to have me request to go through withdrawal, saying it would be hard. He has been a cheerleader and supporter of my complete withdrawal from all pain meds.

Doc ALWAYS intended that I use the prescribed pain meds needed at the time to manage pain. If he had not felt so, he would not have prescribed them. Perhaps your own doctor is attempting to communicate a similar concept to you WDT and is a good advocate for your upcoming possible SCS. If so, I imagine your doc wants you to use the meds until it is established the SCS is a viable help, else the meds would not have been prescribed.

Dependence and addiction are terms on a continuum of dependence which I think are separated by therapeutic administration. I followed prescriptions to the letter. Did not seek more unless in Doc's opinion more was required. AND I never resorted to some "street" means of attaining something my body craved. Thus, I think there is a difference between dependence and addiction.

Bounce this off your doc if you want, follow their advice regarding using the meds to manage pain until you can make a move regarding SCS if it is for you.

Prayin for ya,
Mark56:grouphug:

Scs
 

Hi WDT,

Must of what Mark and Karen (Saffy) have said I completely agree with. I bet the doctor that told you you were a pain addict hadn't a clue what he was talking about, I bet he's read the books, looked at the patients but as for pain, he doesn't understand it, he doesn't understand what it does to a person, he basically hasn't a clue and I bet if he was try to walk in your shoes for a day he wouldn't last 5minutes. My reaction to him would be right then i'm off!

I've been there done that I can tell you, my biggest problem when I was 21 was that they didn't believe someone of my age could have such a huge problem let alone require a discectomy, ten years later, same problem different chapter, this time I wasnt taking any crap from them and I suppose being a woman with tears in my eyes they couldn't call me agressive but lets say my husband wanted to pull the head off one doctor for they he spoke to me, he told me the pain was in my head. How f** king dare he!

To cut a long story short I spent many years in Ireland trying to find a doctor who would first believe me and second was able to treat me (it's all in my bio if you fancy a read) I eventually found this pain physician and he agreed the SCS was the way to go. I had it installed in December just gone and the outcome is truly amazing. I've managed to cut back on my pain meds and im up out of the bed and walking everyday. I'm even back at work. I basically got my life back.

Since then I have had some tweeking sessions but I believe this is normal, my doctor did tell me it would take about 18 months to get things right and so far he hasn't been wrong.

As for the physc eval, mine was a piece of cake, she basically asked me about my pain my support, did I fully understand the technology and did I understand that this was a piece of metal that would be inserted into me. I didn't find it a problem, she did ask me about the meds, I probably siad yep, i'd agree that I wil have a little problem coming off them but i said i will cope and that I am a strong willed person with lots of support. I didn't lie but she seemed to understand the pain.

I hope this helps, were a good group here and ask us anything ya like, you don't say where you're from? I'd love to know it makes a difference from each country.

Take care

Sophie :)

With you there Sophie
 

I have been with my wife when docs were in need of removal of a variety of parts given the way they treated her because of her gender and I am sure and for certain about that. Problem is, I am both capable of such anger and well informed of the consequences of exercising it, thus, I manage control and support her as best I can... At least nowadays, her primary doc is female and FAR MORE RESPECT is accorded her.
Mark56:I-Agree::Soapbox:

Saffy MAR56 and Sophie
 

I want to say thanks it has been awhile since anyone does understand no one around here has every been through what I have due to we live in a very small town. The pain doctors in the past have been very rude again around small towns I went to try and see three in I guess what you can call the big city ,ha ha the last I was set up by a doctor and they wanted to start over with injections made date and sent papers I called them not to start a problem but I had a reaction last time and was in hospital for 1week from it, anyway when i called and told them my name they said oh your doctor has been called this doctor cant treat you ,wouldn't give me a reason before i could ever get out anything else . The others before I could talk just said they don't prescribe opioid s and I was like OK so what can we do and they had the nerve to say once I showed them my records said there was nothing to do , that's when I researched and found this site and meet a new neurosurgeon and ask him about the SCS from this site and he said yes he thought it would be a very good idea to try it . I will have to be honest I have cried , gotten mad and prayed for help even have tried every over the counter med to subside some of the pain as the old saying it could drive a grown man to drinking ,the pain doctors around this area just dont seem to care unless it is big into making money for them.
My old doctor I lost I loved him he had treated me for ten years never no problem till this mess and at the time he tried everything he could do but was out of his hands.
Does the SCS seem to take the pain away or is the pain there and another feeling? I guess this is what scares me since I stopped the meds life just sucks , really and it worries me that I may be wasting time or I don't want to get my hopes up but I am hoping that some form of help is there.

On Pain with SCS
 

Hi WDT- The sensation I feel with the Boston Scientific Precision Plus SCS is a tingling in my lower body as though I am cold and have the shivers. The sensation somehow produces an effect referred to as parasthesia, a confounding of the nerves which prevents the pain usually felt from being transmitted to the brain. The cool part of my implant is that there are no wires exposed or to attach, and the remote accesses my four programs and the varied strength of settings on the device kind of like pointing a TV infrared remote at my hip and pressing buttons for commands.

The device DOES NOT shut off the pain producing quality of the nerve issue in you body. Instead it confuses the signal so the brain cannot register pain. When I turn the device down quite low, I still feel the pain as though it was still there like when I was taking meds. If I experience a pain spike; that is, pain which surpasses the settings on my device at the time, I turn it up until it handles the pain. No longer am I a patient consuming pain meds. I withdrew from them last August.

So, look at the SCS as a potential pain management device as a different means of pain management compared against meds which you have been taking. It does not work perfectly because it is human designed, but I will tell you, it has been a great way to have my life restored. Thus, I think of it as a restorative device.

I am sorry your doctor referrals have turned out to be duds. If you have a neurosurgeon with good hands who comes well recommended, then you are probably in a safe place. I felt very very blessed to have the doctors who cared for me in Denver, Colorado.

Big Hug for ya,:hug:zzzz
Mark56:)

Sophie I think alot of doctors have been pushed by corporate so hard , now days it is a clinic or group with a senior doctor in control and corporate tells them what they must do also there is no ethics involved anymore I am in Mississippi and have been retired from fire and rescue for around 3yrs the thing I can say I know what it is like to have people that have problems and injuries and we never treated them like they were a idiot , one thing is to help and understand that they didn't ask for it even when the a dui wrecks it was still a human and they all hurt I just don't understand why doctors act like they don't have the time or have to explain things. I am scared about the SCS and hope to get approved at the same time , to me knowledge is best for anyone.

Thanks Mark56 that helps I am in Mississippi and I hope to have this new doctor approve it he is in Louisianan and I have never been to him but he came highly recommended so Monday is the day I will know more got the call today to be there Monday I really hope it goes well missing church and activities that when on meds I was doing some but since I dropped them I just cant seem to make even sitting up an hour.

What a day
 

Glad I got the call to see the doctor Monday.
It will be a long drive 4-5 hrs each way but if approved for the SCS unit the feedback from everyone is a high note compared to what I have been researching so thanks to all.
I will let you know how it goes and hope someone learns from my research and finds this place cause this has been a blessing from GOD that I have prayed for.
If I may ask I would like to know your experiences with the trials even though it puts me to tears I have tired to make every one of my kids events and some times I can make it about a hour in church I cant miss it I just feel it has made me a better person to push it as much as I could,I am a very stubborn person when it comes to someone telling me I cant do something,hmm.
I have paid the price sometimes and mabey pushed it to hard but when the meds were there it can make you do stupid things so to speak , another reason I am looking for help with pain not another drug.

I hope it works for you ,
The pain is very draining and I thank the Lord for my family cause they have stuck beside me through everything and I have missed a lot birthdays , holidays and so on.
I tried to make it up this year but once again I ended up at the hospital and that drives me crazier than anything I am tired of the hospitals over 80 times I have been put in hospital a week to two weeks at a time in 2 1/2 years that's crazy maybe they need to check the doctors heads.

Pain and Trial
 

Hey WDT- Regarding the Trial, my thread has a bunch of that down on a day by day basis and you can find it here: http://neurotalk.psychcentral.com/thread117854.html

Regarding pain and faith and missing out on things, well that is pretty much covered in the thread too, but I have had a deep dependence upon God for a long long time, and I believe God has seen me through so much that all I can say is I feel blessed. I missed out on some school plays, family movie nights at the theatre, sports events because I just hurt too much. I refused to give up going to church, because I felt it was God carrying me through the pain and I wanted to worship. I had sung on the worship team for years and played bass. Those I had to drop [although now I am back to singing as Rae can attest]. So, I would lie in the pew, my head on my wife's lap, and tears would fall from my eyes the pain was so bad. I finally missed a Sunday or two right before the first of my deep back surgeries because I was screaming in pain by then and nothing was functioning anymore.

Even so, with pain, God has been my constant companion as has my wife. The young ones, well they did drive me around when I needed driving, but the pain I suffered eventually drove our daughter into counselling because she began to feel so down that I hurt as I did. For a while she could not acknowledge and was angry with God, although I let her know that without God, without the many prayers I received things could have been MUCH worse.

I have been praying for you, and hope you will be embraced in His arms as your appointment time approaches so that all may ultimately be well,
Mark56:hug:z

SCS implant
 

Hi there,

I hope this works out for you and you can look forward to getting some pain relief and your life back.
Pain is very tiring, draining and as for the depression it can cause, it's just terribly unfair, I dunno why i asked God so many times, what did I do to deserve this, in the depths of ugly deep pain with the tears streaming down my face. It's not easy, thankfully my husband and family have been a great support.

Like most people, I've missed loads of work, birthday parties, weddings, girls night outs etc, this is hard but thankfully this year I've started to go back to these things and it feels good.
I think you're right in what you say about some Dr's, they are orientated by greed and the private payout they receive from the companies, they tend to push for a device that might not suit you. I guess that's where your research, common sense and sheer stubbornness can help.

As for the trials, I have a Medtronic SCS and I too feel the sensation of it working but it's not a horrible sensation, more of a tingling sensation. The surgery in Ireland for this was a day procedure and it was done under sedation rather than a g. anaesthetic. Its supposed to be left in for about 5 days to a week to see if you get some relief. Unfortunately there was a problem with the technology for my trial and it didn't work. My Dr decided to proceed with a full implant as he knew I'd benefit from it and so far he has been right.

I hope this Dr works out for you, let us know how it goes,

Sophie xxxx

Question
 

Does anyone think I should ask or talk about how the meds masked the problem with the new doctor or does the policy don't ask don't tell apply?
With the history of meds and what the doctors have put in the records "which some information is not correct just their opinion" I know I was there , all I was told to bring mt Mri CT and xray reports and disc but they didnt want any medical records not sure why.
I dont have anything to hide but I have noticed with other doctors the minute I mention the meds I was on they say I dont prescribe opiods and it offends me cause I didnt go there asking I went there to get help by what ever means hoping to not be given meds but something to have a better life.
As you can tell after 3yrs first surgery was in Nov.2008 I still don't understand what to do,I can say the first 2 yrs I really don't remember much due to I was in the hospital so much .
This bothers me cause when I was in the field we trained so you was prepared for the things presented to you all you had to do is listen and observed the rest came as the scene unfolded.
I have yet since my old PCP flew south met a doctor that seemed somewhat willing to look at the whole picture and gather the information needed to make a call in my best interest.Even when I found out about the SCS it was my idea and one doctor against it and another for it ?
So now Monday going to a new doctor , and another thing that has caught my attention the neurosurgeon set this up and a pain management is the consult but it seems the post I read is telling me if I have a good neurosurgeon to trust him? So I am unsure who is suppose to be doing the SCS unit?
I know here I go again this is me worrying have I made a good decision or bad.

Disclosure
 

Asking any doctor to put their hands in you for any remedial help as for me, I had to let them know...... let them know so they could know how best to help me. That is about all I can offer on that point.

May all be well with you,
Mark56:grouphug:

I do agree
 

I agree I have always tried to start with history , just seems some don't really want to hear it, I guess funny in a way , to me I think I will pray and carry everything with me and if he wants it the it shall be . I know when I first met my old neurosurgeon I laughed at him he was funny and direct but seem to care and explain everything to me and my wife , when he switched to another clinic with another group he got rude and acted like he didn't have time for anyone.Strange how people change over time. Thanks for your answer it does point me in the direction I need. I just have thought I have been so open about every thing maybe I was over loading them.

Praying and following God's Lead
 

You do mention a reality that is fundamental to my lifeline and that is yielding all of my stuff up to God in prayer. It is through that I came to the conclusion bringing all matters to the docs was the best way a good path would be shown. Goodness, there were 5, count them FIVE surgeons who at first did not want to treat me........

What did it come down to? Their realization that I was a lawyer involved in litigation [and fairly good at what I did even if I do say so myself]. Well, I became so outraged at the last refusal to treat, I demanded my complete file from the doc. He gave it AFTER dictating a letter to file proclaiming to anyone else who would see it that I am a lawyer. Now, I do realize lawyers are among the least trusted most foul creatures on the face of the earth, that is next to people who intentionally drive aircraft into buildings, but to refuse to treat on the basis of one's career. That was just too much.

It was at this point in my story God led us to a young neurosurgeon who said he was absolutely willing to help, and we had set up a followup meeting to discuss making ready. In the meantime, though, my body gave out-- it is referred to as cauda equina syndrome and meant that I no longer had control over the lower half of my body...... that and the fact that I was screaming into a pillow because it hurt SO BADLY. I would scream until finally I would black out from the pain. Surprise, my willing doc said this was an emergency case, and he got me into the first hospital in which he found a bed with which he had privileges. Not his hospital of choice, but a very good one nevertheless.

Did I tell him everything? Sure, even showed him the letter from Dr. Ding Dong in a VERY prominent practice hereabouts who dared to write the letter to file. My precious doc was beside himself why anyone would do that. With my wife that made three of us.

Prayin you appointment goes well,
Mark56:grouphug:
P.S. Take your wife with you to the appointment. She is an important part of your life and can fill in gaps you might not recall. I always did, and my wife has been indispensable. She has truly lived up to the vow- for better, for worse, in sickness, and in health= One of the great blessings God brought into my life almost 38 years ago.

Thanks
 

I want to say thanks not for anything but for everything.
I have a good friend that is a lawyer and he still has God very much in his life , and in his practice ,he does the best he can and will be one of the first to say others in his field there are some on a path of destruction.
My records confuse me cause doctors contradict themselves,in one part they say opioid dependence and misuse , and then in the next line he says, I will continue to prescribe dilaudid to him because we have no other treatment medications that work for him?? I mean what?In another, Depression chronic and then, seems to have a very good concept of things and very pleasant personality. I mean for real,it seems like he is talking about two different people.
I will have my daughter with me she has been a big part in helping with the doctors , she is working to become a lawyer-wants to work with the military JAG--my wife wont be able to make this trip she has a new employee starting and must oversee the transition of that.

Sorry
 

I want to apologize I just cant sleep been this way for about 2 months pain just wont let me and I seem to ramble on sometimes.

Apologies unnecessary
 

WDT- Pain puts us in a place where existing is difficult itself, rest interrupted, not always the best at communication because of rest deprivation and the very pain itself. This is a safe place in which to allow your feelings come into expression and your exploration of questions, just as you are, to occur. No apologies necessaryl

Praying for you come Monday,
Mark56:grouphug:

Thanks ,
It has been a day today, I watched my kids wash and wax the truck and wow I forgot how much work went into it,I couldn't believe that they even cleaned the inside and windows said they are getting it ready for the trip haha funny , I really have a great family.
Talk about sore though just sitting and watching them made pain flare up so I went and laid down for a long time.Anyway with the post you made this scs and reading about pain pumps do make me worried not real sure for what reasons but most likely will talk with the church in the morning about it.I know that a lot of answers will likely get answered at the consult.I really want to give the hand shake to you.I hope you had a great day.

Mondays visit
 

Went and meet the pain management doctor Monday and before I got there my back felt like someone had been punching it, found out that I have got kidney stones ughh, anyway the doctor advised that he was unsure if the scs would even be possible due to my second surgery had been in the rear of my neck and there was a good chance scare tissue wouldn't let the needles pass through it, he was going to have to call the Boston Scientific team and see if any good results with this type of scs surgery and that he hasn't preformed this on someone that has had surgery in front of the neck and the rear.He also advised due to the government being so involved that I was pretty much going to have to live with the pain because I chooses to stop taking the meds that now all doctors will have to say I could live with out them even if I cant drive or go very far, no matter how many or how long the hospitals kept me that ,that would probably be the only way I would get help for the pain, so I guess I am making some very stupid decisions.So I am unsure what now.
On the other note I have never had kidney problems so I have to wait till its taken care of before any further attempts , and have to be off all meds 17 days before we were ever to consider it.I dont know what now just day by day.

Ouch- Kidney Stones
 

Never had them myself, but WDT, learning you are also dealing with this complication to your situation sounds extra awful!!! I hope they are able to pass and the situation does not involve invasiveness of surgery! You might want to take a look at Tchr012 who has had complications of stones and SCS although her SCS is lumbar I think and not cervical as you are describing. Finonab also has cervical SCS, well actually she had both cervical and lumbar, so I am not sure whether her situation would be a close fit for you, but you could look up her threads on the Search function on the Task Bar above.

You mention Government, and I am not sure how Government is involved in your situation, but I have had Government involvement in my case as it started as Workmen's Compensation for an on the job injury and then Social Security became a factor, so I retained a lawyer to help me with the ins and outs because I needed an advocate who WAS NOT ME to take care of the battle to get me my due. If you are military, then I have not a clue about who advocates for you with the VA. But KZLRogue is former military and may have thoughts if that is your issue. She now has SCS and is golfing again and thinking of returning to Karate carefully.

I know the whole thing of considering SCS can be frightening, especially with the scarring compounding the situation. I have been there and felt the fears when I was considering it, but.... well.... for me it was more of the same old, same old, meds and more meds or this, and I am glad I prayerfully considered the approach. All I can do for you is pile on the prayers. Doin it!

You take care, and listen to your docs, ask questions without fear they will not respond, and God will weigh in,
Prayin,
Mark56:grouphug: