SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


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Old 02-20-2010, 12:46 AM #1
kzlrogue kzlrogue is offline
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Default Recently implanted SCS

Hi all!

I am so glad that there is a post that's just for SCS and pain pumps. This site is so AWESOME!! Everyone is so great and has helped me with their comments and suggestions that I thought I would pay it forward with my story in hopes it could help someone else......

I’ve lived with chronic pain that radiates throughout my entire body for the past 5 years. After being misdiagnosed numerous times, the doctors finally discovered that I have stenosis, a split in my lower spinal cord, and a tethered cord that isn’t tethering as of yet. I was told that surgery to correct these things would not be possible at this time so they introduced me to the SCS implant. I did the trial back in October of last year. During the trial, I was hesitant as to whether or not it was working for me. It was a matter of getting use to trading in one sensation for another. Now, most people would say a tingling feeling is much better sensation then pain. I tend to agree. However, I know pain. I’ve been living with it for the past 5 years. I wake up with it and go to sleep with it. This tingling sensation is new to me. Would it be like starting all over again 5 years ago but with tingling instead of pain? I had my answer as soon as the trial was over. I knew as soon as they took the leads out and the pain came rushing back. The tingling sensation was so much better than the pain. I had control over the tingling. I never had control over the pain.

So, that same day I made the appointment for the implant. It was scheduled for February 10, 2010. My doctor and I discussed the fact that I wanted to be as active as possible since I was only 37 years old and had a 6 year old to keep up with. We decided to implant a paddle over the leads to keep them more secure. My doctor placed the leads in the T9 - T10 area. This will only cover my lower back and legs. She also had to cut out a little bone in order to make room for the leads and paddle due to the stenosis. Also, my arms and neck would not be affected with this surgery because the stenosis was worse in the cervical area. However, I am hoping that with physical therapy and exercise (which I wasn’t able to do before) it will help alleviate that pain.

My doctor told me the surgery went great. However, my body did not like the heavy duty pain meds so I ended up staying in the hospital an extra day. It’s been a little over a week since the surgery, and I am still uncomfortable with pain around the incision area but I’ve only been taking Tylenol and Ibu since the stronger meds make me sick. The battery was placed on my right side above my waistline. It’s a little tender to the touch and it’s a little bruised but other than that I have had no other pain associated with it. I was a little disappointed with the Medtronic’s rep. He tried to show me how it all worked when I was still in post-op. I told him to come back since I was still a little groggy. He came back a few hours later to my room but you could tell I was his last patient because he was very quick with his instructions and then left. Luckily, I had a friend in the room who also listened to his instructions because I was still a little out of it. When I was more alert the next day, I had more questions so the nurses called Medtronic’s. They sent a different rep down. She was so much better about explaining things. My advice in handling any rep is to not be afraid to tell them to wait until you are comfortable and can comprehend what they are trying to show you. Or have someone there who can show you after they leave. Now, Medtronic’s does provide a DVD that explains everything, but I believe one-on-one training is so much better.

So that’s pretty much my story in a nutshell. I’ve got my first follow-up appointment on the 22nd and I will let you all know how that goes.

Thank you to all who have ever posted on this website and all who are just popping in to read some of the posts. It is great therapy to express your feelings to people who actually understand and have gone thru what you are feeling!

You are all the best!!!
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Old 02-20-2010, 02:21 PM #2
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Thumbs up Awesome Testimony !

Thank you so much for taking the time to post a detailed scenerio of your experience!! I hope more and more people do the same....every bit of info means alot to us!
Some experiences are good, some not so good. Either way, it's important for people to be aware of everything involved.

I felt the same about the Medtronic Rep when I had my trial. I felt very very rushed, which caused extra stress. It's absolutely imperative to have someone there to be an extra set of eyes and ears. And it only makes logical sense that they should explain things BEFORE we come to the post op area!

You've got such a wonderful way of explaining the experience. I hope they asked you to be a spokesperson for people to reach out to. It means so much to hear it from the perspective of the patient. Not to demean the medical personnel, but they usually are very busy and have several other procedures to get thru in a day.....they simply aren't usually able to give the one-on-one that we are desperate for during such an intense time.

God Bless you! And may you have a smooth recovery!

Rae
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Old 02-20-2010, 02:44 PM #3
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So glad you are thru the worst of this. I can not say this strongly enough-THE MED. REP. is the KEY to your success with this. Is the Rep. scheduled to be at your follow up appt.? Mine came to EVERY appt. and reprogrammed me every time. I do not even use the initial programs. Pain changes and traveles all of the time. PLEASE get a good repoire with your REP. This is VITAL to the implant success! You are in my thoughts and prayers-Fondly-Carol
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Old 02-22-2010, 01:03 PM #4
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Just got back from my first follow-up appointment. The Medtronic's rep was not there. However, one of the nurses was able to re-program. Boy, what a difference! Each day the muscle pain from the surgery is diminishing and I am no longer nauseated!! HURRAY! I now have the SCS on and am adapting to it nicely. However, I came down with a cold over the weekend so everytime I cough or sneeze the "tingling" gets stronger. It's just like during the trial when I would sit or stand. You can tell the difference when "pressure" is added. It doesn't hurt....just a little bit more of a sensation. However, I am told this will go away with time. It has only been 12 days since the surgery and I'm starting to feel pretty good so I'm looking forward to how I'm going to feel in the next 12 days.....and 12 days after that......and 12 days after that......
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Old 02-22-2010, 04:26 PM #5
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Oh My -What a time to get a cold-UGH. Isnt it mazing how reprograming works!! have it done whenever you need it. i am so thrilled that you are getting along nicely. please take it easy for awhile-the longer the better till things have a chance to scar over-I know it is hard but hang in there -it will be worth it. Fondly-Carol
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Old 02-25-2010, 06:42 PM #6
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Hi
I do have a question. This tingling from the SCS, is this similar to the TENS sensation, only permanent on the inside?

Oh, one more. Can the leads be placed from cervical to lumbar area?
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Old 02-25-2010, 09:06 PM #7
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Yes, I think the tingling sensation is like the tens unit and as far as the SMS being permanent....If you consider this, you are required to have a trial done first to see if it works. If it does and you decide to have the surgery, the leads are then implanted. They can be taken out at a later date but with any surgery, there are always risks so you really need to be sure this is what you want to do.

The nice thing about the SMS implant is that you have the ability to turn it on and off. I have found that after I turn it off I still feel a little tingling afterwards. I was even told that some people can have it at such a low frequency that they don't even feel the tingling and it still will interrupt the pain signal to the brain. I personally have not experienced that so I feel the tingling.

As to your other question about the coverage from lumbar to cervical. I believe it can cover those areas. Even though I have chronic pain throughout my entire body, I was not a canidate for it to cover both areas.
I would check with your doctor/neurosurgeon as to what is available for your specific needs because I am no way qualified, other than to tell you thru my experiences.

Hope that helps a little. Good luck!
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Old 02-26-2010, 09:20 PM #8
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Hi
I know we aren't docs here, but you really helped me a lot!!! Thank you. I also have cronic pain, seems like everywhere, and that's why the second question. I had a 4 level cervical fusion some years back, that's fine now, but everything else there hurts. I need to get in for MRIs and see exactly what is going on.
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Old 03-01-2010, 09:38 AM #9
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Hi folks ~ I'm going to add one thing here. I had the SCS (it's been ~removed.) It is IMPERATIVE that when you are in the trial period, the doctors or the rep does NOT give you too many "restrictions" during your trial period. My trial was for a week. I was sent home with a unit for 7 days and I was given so many restrictions that I never got a good assessment of pain relief. I "thought" it covered the pain quite well. But then I get the SCS implanted and go on about my business and YIPES ~ I hurt like the devil and the SCS just irritates the sciatic nerve more than ever!!!!

I kept having it reprogrammed, etc., and tried this thing for 6 months and then to top it off it was too "heavy" for my body and tried to work itself out! UGH. So I had to have it removed. But I wish they hadn't given me so many restrictions during the trial cause I could have had 6 months doing something else! So make sure they don't "tie you down."

Thanks. Peace, Lee
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recovering alcoholic, sober since 7-29-93;severe depression; 2 open spinal surgeries; severe sciatica since 1986; epidurals; trigger points; myelograms; Rhizotomy; Racz procedure; spinal cord stimulator implant (and later removal); morphine pump trial (didn't work);now inoperable; lumpectomy; radiation; breast cancer survivor; heart attack; fibromyalgia; on disability.



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Old 03-01-2010, 11:38 AM #10
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I read on another site where a person suggested that during the trial period you try to do things you couldn't do before, to see if it really will help when you get the permanent implant. The downside is that if you do push yourself, and it takes a while to get the permanent one in (waiting on insurance approval, waiting on a surgery date, etc.), then you may be in more pain than before the trial. So make sure the dr. is willing to help with increased pain while you're waiting on the permanent implant.
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