[tinkster]

I would really like some imput/opinions please. I had a SCS put in last December. I had a wonderful trial and had no reason to believe that nothing less than success would be achieved with the perm stimulator.
Well... its not covering my pain and the spot where the battery is has never stopped hurting, and recently its worse, hurts all day every day.
My doctor was gone this week but I left word with his nurse that I wanted it out! She said she would start the paperwork, however, when i met with the doctor filling in for my doctor he said he highly recommends i do not have it taken out. He thinks I need a revision surgery.
It sounds to me like another surgery, another recovery, and no real gurantees it will do any better than what I have now. This doctor said they would put paddles in this time, not leads. He made it sound as if this revision is a piece of cake, I know better. He said "you have done the hard part, don't give up now". I just don't know what to do. I would hate to have it removed if a revision really could work but then again I am not convinced it will work either, and more surgery does not sound appealing right now. In many ways I would like it out and just be done with it. But this doctor said nothing else is left except managing me with pain meds, which is depressing just thinking about it.
Any advice is helpful, thanks.
I will talk with my regular doctor soon about all of this too and get his opinions.

[Mark56]

Well Tinkster, I am sad to say the very least that all has been so difficult for you in this adventure. Most do not go the way of difficulty you experience once the Trial has been positive, but math and the uniqueness of each human body has to collide every once in a while with results the likes of which are dragging you down.

Tchr012, RRae, and PoohAC have had some sort of revision or replacement work, while Jackie has had a bad battery removed and replaced since hers never worked porperly or would charge. You may want to reach out to them, or they will reach to you since we will keep this at the top of the list!

Prayin for a better solution for you,
Mark56ZZ

[pooh_ac]

Originally Posted by tinkster

I would really like some imput/opinions please. I had a SCS put in last December. I had a wonderful trial and had no reason to believe that nothing less than success would be achieved with the perm stimulator.
Well... its not covering my pain and the spot where the battery is has never stopped hurting, and recently its worse, hurts all day every day.
My doctor was gone this week but I left word with his nurse that I wanted it out! She said she would start the paperwork, however, when i met with the doctor filling in for my doctor he said he highly recommends i do not have it taken out. He thinks I need a revision surgery.
It sounds to me like another surgery, another recovery, and no real gurantees it will do any better than what I have now. This doctor said they would put paddles in this time, not leads. He made it sound as if this revision is a piece of cake, I know better. He said "you have done the hard part, don't give up now". I just don't know what to do. I would hate to have it removed if a revision really could work but then again I am not convinced it will work either, and more surgery does not sound appealing right now. In many ways I would like it out and just be done with it. But this doctor said nothing else is left except managing me with pain meds, which is depressing just thinking about it.
Any advice is helpful, thanks.
I will talk with my regular doctor soon about all of this too and get his opinions.

(((Tink))), I am on my 3rd unit, killed the battery due to energy use on 1st one, fell dislocated my shoulder and pulled my leads loose on the 2nd one. This one is a rechargeable unit, they put in new leads etc. They plan to "tweak" my unit soon again to attempt to cover some changes in pain patterns and sciatica. If this does not help I am considering having an additional lead placed. I could not live without this unit. I would ask for for xrays to make certain your leads are in the same position then have a heart to heart with your doctor

[smae]

Originally Posted by tinkster

I would really like some imput/opinions please. I had a SCS put in last December. I had a wonderful trial and had no reason to believe that nothing less than success would be achieved with the perm stimulator.
Well... its not covering my pain and the spot where the battery is has never stopped hurting, and recently its worse, hurts all day every day.
My doctor was gone this week but I left word with his nurse that I wanted it out! She said she would start the paperwork, however, when i met with the doctor filling in for my doctor he said he highly recommends i do not have it taken out. He thinks I need a revision surgery.
It sounds to me like another surgery, another recovery, and no real gurantees it will do any better than what I have now. This doctor said they would put paddles in this time, not leads. He made it sound as if this revision is a piece of cake, I know better. He said "you have done the hard part, don't give up now". I just don't know what to do. I would hate to have it removed if a revision really could work but then again I am not convinced it will work either, and more surgery does not sound appealing right now. In many ways I would like it out and just be done with it. But this doctor said nothing else is left except managing me with pain meds, which is depressing just thinking about it.
Any advice is helpful, thanks.
I will talk with my regular doctor soon about all of this too and get his opinions.

Honestly, of course, it is up to you. You and your doctor probably know best.

With that being said, I wanted mine removed as well. I had a paddle SCS put in back in November. It didn't help at all. I had a second paddle lead put it (connected to the same battery--so I have 1.5 systems, basically) in March.

It still hardly helps. I get about 5% pain relief from it, which is not near enough to be able to go live life like I had hoped. I am bedridden and stuck in my bed in horrible pain, even on two narcotics.

I wanted it all removed because I worried about years from now needing an MRI and not being able to have one due to the SCS.

But my surgeon told me that it is a painful surgery to have it removed and the risk of infection is pretty high and that there really was no reason to have it removed unless it was causing severe issues. In my case, it isn't. It doesn't cause me any pain. It just doesn't work.

A revision is not fun. But if it may help, it may be worth it. Or it may turn out like mine and still prove to be worthless.

But that is the tough decision, and the one you will have to make.

Either way, I truly do hope that something works out so you can manage your pain. It is no fun to be hurting so bad!

[Mark56]

Thank you for reaching out, I inadvertently omitted your name when recommending folks with whom to follow up. Yes, you have been through a GREAT DEAL of intervention, only NOT to have the device work for you. I truly understand your bedridden state on narcotic prescriptions, for that is an accurate representation of my life prior to last June.

I continue to hold you up in prayer, hoping that in some way you may be comforted through this ordeal.
Caring So Much,
Mark56ZZZZ

[Patti_Christmas]

Wow - I read this and thought it was one of my previous posts. This sounds exactly like what happened to me. If you don't want it, don't get it. If you want your unit out because it is too painful, do so - but understand that it can make things worse, the same or better.

As far as the doc saying that you've already done the hard part, he's full of crap. If you have it re-done, and paddles implanted instead of leads, it is extremly PAINFUL! They have to do a laminotecomy to implant the paddles. Did they say the paddles would keep the sensations from going to other locations? Did they say that the paddle gives a direct connection and does not move like the wires?

Well if they did, ask they about swelling - ask them about the way the spine is floating in "water" and whether or not that affects how and where the sensations hit.

I started with RSD/CRPS in my right leg and foot. I had my first implant in Sept of 2010. The "corrective" surgery (why didn't they get in right in the first place if it's not so difficult?) in Dec of 2010. I now have RSD/CRPS in my chest, my back, my arms, hands and fingers. I've gone through so many freaking blocks, started "land" physical therapy (completed the first 6 weeks - woo hoo for me), and start "water" therapy tomorrow. Do I feel better? No - I feel worse.

My advise to you is to seek out a second opinion from a different pain management specialist - not just any "specialist", research for the best pain management specialists in your area, in neighboring states, etc.

[tinkster]

First off, thank you so much for your replies, I appreciate each and every one of them.
The doctor filling in for my regular PM doctor did say that the paddle leads would not move/migrate. He also made it sound like the surgery would be no big deal at all, hence the "you have done the hard part already". But at the same time explaining they have to remove a small piece of bone for the revision surgery to insert the paddle leads. Also, because the battery is hurting so much, he said they would relocate that as well. In my opionion this would be not be a piece of cake surgery.
I will talk with my regular pm doctor soon, and get his take on all this. My biggest fear is doing a revision and having it not work. Its discouraging to go through all this and still not have the desired pain relief.... thank you again.

[Mark56]

Any physician who would ever speak of surgery requiring general anesthesia, multiple incisions of the back [spine and pocket location], excission of bone regardless how de minimis, and all of those neatly typed disclosures every patient always has so sign off to regarding having been informed of all of the risks and things that could go wrong in the OR should likely not be treating you. I had permanent implant of SCS unit devices via partial laminectomy with insertion of paddles. It was taken very seriously by the whole team. Back surgery is back surgery. I had similar pain from the implant just not as severe as I had for prior fusion surgeries. But by gum, every movement made by me post surgery was painful, even rolling in bed. Every physician who has treated me has spoken of the care which is being taken to perform their professional work carefully but that sometimes things can go wrong. They do not want to needlessly worry the patient, but truth be told, there are risks anytime skin is opened. Typically this is why surgery is held off as a last resort treatment to a host of issues.

So, please do take the lead and ask questions to ensure your treatment is to be afforded the proper due care medical treatment, not non challant, not slapstick, but with propreity and seriousness. Why do I react this way..... because I personally knew a woman in my community who went in for a Selective Nerve Root Injection, typically done here in an OR, treated as surgery with extreme care, under fluoroscopy to assure proper placement because of the risks inherent to improper care. Her doctor did not perform the procedure thusly, instead opting to perform his work in a doctor's office examination room. Infection ensued. The woman, whom I knew, died.

Surgery is no simple matter, no laughing matter, no matter what. Ask PoohAC, she will urge questions, caution, and despite the routineness of the procedure for the physician speak to you of due care for the patients. Anyway, I do believe she would address you that way.

Caring for you, and hoping all will go extremely well,
Prayin,
Mark56 zz

[hurting]

Originally Posted by Mark56

Any physician who would ever speak of surgery requiring general anesthesia, multiple incisions of the back [spine and pocket location], excission of bone regardless how de minimis, and all of those neatly typed disclosures every patient always has so sign off to regarding having been informed of all of the risks and things that could go wrong in the OR should likely not be treating you. I had permanent implant of SCS unit devices via partial laminectomy with insertion of paddles. It was taken very seriously by the whole team. Back surgery is back surgery. I had similar pain from the implant just not as severe as I had for prior fusion surgeries. But by gum, every movement made by me post surgery was painful, even rolling in bed. Every physician who has treated me has spoken of the care which is being taken to perform their professional work carefully but that sometimes things can go wrong. They do not want to needlessly worry the patient, but truth be told, there are risks anytime skin is opened. Typically this is why surgery is held off as a last resort treatment to a host of issues.

So, please do take the lead and ask questions to ensure your treatment is to be afforded the proper due care medical treatment, not non challant, not slapstick, but with propreity and seriousness. Why do I react this way..... because I personally knew a woman in my community who went in for a Selective Nerve Root Injection, typically done here in an OR, treated as surgery with extreme care, under fluoroscopy to assure proper placement because of the risks inherent to improper care. Her doctor did not perform the procedure thusly, instead opting to perform his work in a doctor's office examination room. Infection ensued. The woman, whom I knew, died.

Surgery is no simple matter, no laughing matter, no matter what. Ask PoohAC, she will urge questions, caution, and despite the routineness of the procedure for the physician speak to you of due care for the patients. Anyway, I do believe she would address you that way.

Caring for you, and hoping all will go extremely well,
Prayin,
Mark56 zz

This is one of a few post on any of these forums that truly address the real problems with having surgery of any type. I have seen several PM doctors over the past 7 months 5 in all to get options and all but one said before they ever looked at me I can cure your pain for ever by implanting a SCS. I ask the 4 PM Drs. for references since they all said that all their patients had great outcome. Not one could with one name. It seems that most not all but most PM Drs. take this SCS very lightly like it is doing a oil change. 3 Drs. out of the 4 said that this was a piece of cake to implant. The 1 Dr. told me that he does more SCS implants then any other Dr. in a 12 state area and it is no big deal. This same Dr. wanted to do a block that day and I told him that I did not bring a driver with me and he said no problem he does blocks different that most other Drs. do but I passed and never went back to this dr. again. I have had 5 blocks in the past and I was loopy for hours after each block. All blocks are for my right hand, entire arm, upper chest and back.

I have crps type II now for over 4 years and only been treated by PM Drs. for just over a year now. All these PM Drs. act like they want to implant SCS and be done with you. All 4 Drs. never said anything about possible complication of any type all said only good things about the SCS units. As I understand it this is to be used only as the last possible treatment. They all seem to want to do this first over any other other treatments.

Tinkster

I have found that to get a unbiased answer to your SCS problem I would find a Back Surgeon and tell that person what your problem is and what you want to do then see what options they come up with. These Drs. have worked with SCS and would have a clear understanding as to how they work and how to implant them. They will give you more answers that you will not get from any PM Dr. You have waited this long so take the extra time to find a answer from some else that has no connection to your case they may have a better way to fix this once in for all that no one else thought of. New eyes can see things in a clearer light.

Sorry for the long rambling.

[Mark56]

Oh Hurting- I ache for you in your situation, and all the more feel blessed regarding the doctors whom I have had treat me. My Physiatrist [aka Pain Doc is a board certified fellowship trained Physiatrist and very cautious practitioner. For this reason, he offered SCS only as the last resort after I had been through all else. Never did he express the process was easy, because it is not, as the whole of the process is arduous with hoops to navigate, and the double surgeries to endure. It was he who did my TRIAL placement in an OR under sterile conditions, and it was good. The TRIAL period lasted a week, then we gathered for the verdict and removal of the Trial leads. Only then did he have me interview with a recommended and trusted Spine surgeon, and Orthopedist in this case, whom he believed to be highly skilled and very careful. My wife and I went and proceeded with the interview, resulting in our asking the surgeon would he be willing to permanently implant the device in me. These are all treated as serious decisions and not casually among the practitioners whom I so trust.

Then on 30 June 2010, my surgeon with a whole team of folks gathered with me in the OR after a big crew from our church gathered in the prep area and prayed over us [joined by my surgeon and anesthesiologist] and then we went to do the deed, and it was good. Painful, absolutely, carefully done, I am convinced, a success, yes, and later that summer I fully withdrew from all pain medications and have used the stim and my trusty cushion to fully manage my pain since. I truly feel blessed.

I do realize my situation is dramatically different from you Tinkster, who now wrestle with the difficult decision of whether removal or revision because the process seems to have gone wrong. Tink, for you I am most sad as to the outcome, as I am for Sarah. All I can really effectively do is caution you about good care since surgery is serious stuff, and pray that whatever the decision you make, that it ultimately lead to peace and resolution for you.

Prayin,
Mark56zz