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Anyone who has had spinal cord stimulator

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Unread 12-31-2012, 07:15 PM   #21
Clerk10
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sounds aweful..... i am seriously reconsidering..... I have not done trial or anything yet....
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Unread 01-02-2013, 10:22 AM   #22
Spiney95
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I had my permanent implant a week ago today and have experienced complete elimination of neuropathy that I have lived with for about 20 years. I have my follow up appt. today. You don't have to make a decission right away. Read everything you can get your hands on.

The scs/pump sub board is an excellent resource and the folks are real supportive. Keep in mind, the info. the doctor and device manufacturer give you will be the "best case senario". Do your own additional research, make a list of questions for the surgeon and if he/she does not answer them to your satisfaction, move on. Best wishes.

Last edited by Spiney95; 01-02-2013 at 10:24 AM. Reason: sp.
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Unread 01-12-2013, 05:09 PM   #23
NerPain4
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I am on my SCS Trial day 1 (insertion day was day o) as I am sitting here with my neck brace trying not to move my neck. The leads move quite a bit that's why they say no bending your neck. I find if I do bend my neck or lift my arms overhead that the intensity of the stim changes which is a bit annoying, but it is working great. I am really pleasantly surprised that I barely notice my TOS/CRPS burning/vibratory pain. In fact, I would say it has brought my pain down to a 3-4 which is kind of unbelievable. The mechanism is that the pain nerves are distracted by the stimulation so that the pain impulse does not go up to your brain and get sensed. I am not wanting to take any pain meds during this trial except for the area in my back where the leads were put in (it is covered by a bandage and alot of gauze and lots of Tegaderm).

Sometimes the stim will suddenly get stronger because I turned my neck and then it is bothersome. Apparently, there is a new stim with a higher frequency being tested in clinical trials in the U.S. right now that has a smoother sensation that is less "noticeable" in patients and that also relieves the pain actually better than the current ones on the market. My doctor told me that one is at least 2 years (2014 or 2015) away from being available to the general patient population.

They say that during the Trial I cannot get the area on my back where the leads are wet so no showers or baths. Only sponge baths (wiping with a damp cloth). I am trying to figure out how I am going to wash my hair because also if you lift your arms above your head the stim leads will kind of move. The Trial is only for a week, actually 5 days for me. I guess after the permanent one is put in, you have these same "position" restrictions for one month except that you can take a bath/shower because they are waiting until the leads scar into a permanent place. Apparently the leads can get no higher than C2, so that is at the low neck, so if you are having pain on your face or head the stim will not cover that area.

There are different programs that the Rep programmed, some are a steady stim, some are kind of cyclical patterns. I find I like the low steady stim better. But its nice to have the different options. When I slept, I turned it way down to almost zero.

I'm really hopeful that this will allow me to eventually slowly go down of and eventually off of the Opiates and Powerful Nerve Pain Meds that are making my mind cloudly. It is because of the mental changes that I cannot work now. I will have to study and retrain for a career which will take years. The 4 years I have been on Opiates my mental capacity has gradually declined, I have a horrible memory and I am dumb. I have heard that brains actually physically shrink (as well as diminished brain function) in people who are on Opiates for a long time.

I am also not a fat person (my BMI is 22, which is the low end of normal range) and the Operating Room staff and the Device Rep kept commenting on how "skinny" I am. I am not skinny by my standards, I wear a size 2 and a size 26 or 27 jean and am 5'5". But the doctor did say that the battery would probably be palpable and visible on my body. The doctor said that the area where the battery is put in, the "pocket", is going to be the most painful part of the permanent procedure. He said that if I wear a two piece bathing suit, it will show like a cardiac pacemaker shows. I am hoping for the permanent one they can place it on my tummy too, not my flank. Right now since it is the trial, the battery pack is outside of the body on a belt that I wear with a velcro closure.

Well feel free to PM me if you have any comments or questions. I'm so hopeful now that it has made me and my S.O. very happy today! Emotionally inside I feel like jumping for joy. (but I can't right now!)
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Unread 01-15-2013, 10:27 AM   #24
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Quote:
Originally Posted by NerPain4 View Post
I am on my SCS Trial day 1 (insertion day was day o) as I am sitting here with my neck brace trying not to move my neck. The leads move quite a bit that's why they say no bending your neck. I find if I do bend my neck or lift my arms overhead that the intensity of the stim changes which is a bit annoying, but it is working great. I am really pleasantly surprised that I barely notice my TOS/CRPS burning/vibratory pain. In fact, I would say it has brought my pain down to a 3-4 which is kind of unbelievable. The mechanism is that the pain nerves are distracted by the stimulation so that the pain impulse does not go up to your brain and get sensed. I am not wanting to take any pain meds during this trial except for the area in my back where the leads were put in (it is covered by a bandage and alot of gauze and lots of Tegaderm).

Sometimes the stim will suddenly get stronger because I turned my neck and then it is bothersome. Apparently, there is a new stim with a higher frequency being tested in clinical trials in the U.S. right now that has a smoother sensation that is less "noticeable" in patients and that also relieves the pain actually better than the current ones on the market. My doctor told me that one is at least 2 years (2014 or 2015) away from being available to the general patient population.

They say that during the Trial I cannot get the area on my back where the leads are wet so no showers or baths. Only sponge baths (wiping with a damp cloth). I am trying to figure out how I am going to wash my hair because also if you lift your arms above your head the stim leads will kind of move. The Trial is only for a week, actually 5 days for me. I guess after the permanent one is put in, you have these same "position" restrictions for one month except that you can take a bath/shower because they are waiting until the leads scar into a permanent place. Apparently the leads can get no higher than C2, so that is at the low neck, so if you are having pain on your face or head the stim will not cover that area.

There are different programs that the Rep programmed, some are a steady stim, some are kind of cyclical patterns. I find I like the low steady stim better. But its nice to have the different options. When I slept, I turned it way down to almost zero.

I'm really hopeful that this will allow me to eventually slowly go down of and eventually off of the Opiates and Powerful Nerve Pain Meds that are making my mind cloudly. It is because of the mental changes that I cannot work now. I will have to study and retrain for a career which will take years. The 4 years I have been on Opiates my mental capacity has gradually declined, I have a horrible memory and I am dumb. I have heard that brains actually physically shrink (as well as diminished brain function) in people who are on Opiates for a long time.

I am also not a fat person (my BMI is 22, which is the low end of normal range) and the Operating Room staff and the Device Rep kept commenting on how "skinny" I am. I am not skinny by my standards, I wear a size 2 and a size 26 or 27 jean and am 5'5". But the doctor did say that the battery would probably be palpable and visible on my body. The doctor said that the area where the battery is put in, the "pocket", is going to be the most painful part of the permanent procedure. He said that if I wear a two piece bathing suit, it will show like a cardiac pacemaker shows. I am hoping for the permanent one they can place it on my tummy too, not my flank. Right now since it is the trial, the battery pack is outside of the body on a belt that I wear with a velcro closure.

Well feel free to PM me if you have any comments or questions. I'm so hopeful now that it has made me and my S.O. very happy today! Emotionally inside I feel like jumping for joy. (but I can't right now!)
Prayin here your trial will produce the endgame result you are seeking! I am a two and a half year post op permanent stim user, and I am happy with the whole package.

Post op, I fully withdrew from all opiates and nerve medication, now being med free and practicing my profession joyfully doing what I can to help people [One of the greatest pleasures and blessings of life, helping others]. Absolutely, during the med use, I felt as though dumbed down, an inescapable phenomenon associated wtih medicinal pain management. So, during that time, my professional contacts were pretty limited.

Now, being free of the chemicals I am in a dead heat to expand the reach of my licensing so as to better serve clients. This I throw in by way of indication if five plus years of the meds shrank my brain so as to permanently dumb me, flexing it once more may have the opposite effect!

Post Op pain? Inescapable. What is worse? The whole of the path to insertion of the foreign body into my own. There was the pocket pain of creating and filling the surgical pocket which now bears my stim generator. There was the laminectomy pain of the thoracic location where the opening was made and used for the insertion of the paddles into my spinal cord space. But wait! There was more..... that route of the cable which ties paddle to stim generator was not without its pause. It was bothersome post op..... Even so, what about surgical pain??? Well, being 34 surgeries experienced as a patient who is humpty dumpty reassembled after a car wreck, I feel surgical pain has been worth it. Such pain tends to be transitory- here today and now, but gone once healing sets in. The most important thing for me was realizing via the Trial use, a means did exist to help overcome the pain which had BOUND ME TO MEDS AND BED.

It feels so good to be active professionaly again! To experience social interaction AGAIN! To be free from the beast monster of intransigent pain because it is managed by my stim.

Does this mean I am healed from the original pain? Oh no. When I turn stim down low I know the monster lives, but the stim masks the pain without the consequent dumbing of the patient.

So, for you I pray all will be well Ner,
Mark56
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Unread 01-15-2013, 01:27 PM   #25
Spiney95
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I had my permanent implant about two and a half weeks ago. This was for assorted lumbar nerve pain to include bilateral sciatica. The nerve pain is completely gone. I have other pain issues that it does not control but I am thrilled to have the nerve pain out of the mix.

We are all different and respond differently to the various treatments. I hope this works for you. Hang in there.

Spine
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Unread 01-15-2013, 04:11 PM   #26
forevernana4
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My pm wanted me to get one and I wanted to wait until after I got new MRI, etc. he agreed.

I can say that when he was advocating for it he said that it either works or it doesn't. If it works it can be to varying degrees. So I said anything goes and laughed. He just smiled so I'm not surprised to see such varied responses here.

I would reckon that's why there's a test period prior as well as psych evaluation, etc.

Whatever you decide, I wish you well. I have a feeling I'll be right where you're at in this decision sooner than later.
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Unread 01-16-2013, 08:01 PM   #27
leejcaroll
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I had a dorsal column stimuklator for phantom facial pain, and trigeminal neuralgia. It helped about 85% of the pain gone.
Unfortunately I lost it to an infection unrelated to the implant. had a second placed in same place with no benefit. I also lost that to an infection, again unrelated to the implant (had friend with staph and think caught it from him) and because other surgeons had been in same area could not have a third.
I now have a totally experimental implant (they are not doing it anymore, I am 13th in country to have it sensory cortical) that failed a few months back.
I have had it since 1991 and untyil it failed I was unaware of how much benefit I was getting from it.
I am not a medical person but because I had good benefit from it, and because it is relatively benign (my understanding of it) I recommend considering them.
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Unread 12-07-2013, 01:23 PM   #28
Miamore40
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Thumbs down Spinal cord stimulator

I've had the spinal cord stimulator for a month now, frustrated that it doesn't seem to work as effective as I want it to. I've had 3 back surgeries due to the Tethered cord syndrome, I have burning pain to both my feet. The trial seemed to wrk for a few days, so I decided to get the permanent done.
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Unread 12-07-2013, 06:44 PM   #29
leejcaroll
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Default Dont give up

It takes time to find the right polarities, amplitude, pulse and width as well as cycling, if you do that, the best amount of time on vs. off etc.
I understand the frustration, because you want it to work immediately (I did) but it can be worth the patience and effort to find the right combination for you.
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Unread 12-08-2013, 09:59 PM   #30
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I am thinking of getting a SCS, too. I have fairly good mobility. I stand, walk, amd do daily chores. My problem is mostly abdomen. It hurts to sit and I can't tolerate car rides. I am female and usually wear dresses. Certain fabrics in clothes bother me. Can SCS help for this sort of pain?

Also, I am small and weigh 102 lbs. I do carry my fat in abdomen.
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