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Spinal Cord Stimulator
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dawngri posted:
I had an SCS. It was removed 8 days ago. I had a major complication, the wires migrated. The pain was unbearable. It created pain and slowly I started having problems walking, this is 2 weeks after not using the stim. I had only used the stim minimally because of the pain it created and then stopped using it all together. I had fusions at C 5-6 and L5-S1. I was considered to have Failed Back Surgery. Pain that will not go away and nothing else to do. My NS said scar tissue due to multiple surgeries. My stim was for the lumbar and leg pain. I have done extensive research, and this is information for those of you who have questions....the SCS wires are placed on the spinal cord and sutured into place. The stimulator sends electrical impulses across the spinal cord to block your pain signals from getting to the brain. A trial is a must to see if it works for you or not. Plus you must have a psychological evaluation prior to the trial. Yes you can have it with hardware. The trial consists of wires in place, that protrude from your spine and are connected to an external stimulator. You control the impulses that are set by programs created by a technician from the company that makes the device. Different programs stimulate different areas. You turn it on and off when you want. My trial was fabulous. It took away ALL of my pain. I was elated, I was going to get my life back. After one week the trial wires are removed, you heal for a few weeks before the permanent one is placed. The permanent wires are under your skin and the device is placed under the skin in the abdomen or upper buttocks for lumbars. During the surgery you are asleep at first for the initial placement, then you are woken and the stim is turned on and the techs work it and make sure it does what it should. You go back under then the rest is done. You wake in the recovery room, the tech then again works the stim to be sure it does what it should. This can be very intense. My problem was it made me very nauseous. At home I vomited for 14 hrs. This is a rare side effect, most doctors have never seen this, but it does happen. The violent muscles spasms from the vomiting for so long caused my wires to migrate. They should only move with an accident or major fall, but others have had them move by arm use over the head or for reasons unknown. For some the wires are repositioned in surgery and all is well. During the healing, which is for 3-4months, you can not bend, twist, lift, raise arms overhead. Recovery is very restrictive. Having a bowel movement is very painful, the staples are painful, trouble sleeping and sitting during recovery. But you can get through that. If you have no problems, for some it is a life saver, some get back to work, stop using pain meds and basically get their life back. I was one of the unfortunate ones. Living with it takes commitment. You should not drive with the stim on, it may surge with head movement which it does do, but you figure that out with time. You need to always have the programmer with you, you must charge the unit regularly. And you may NOT ever have an MRI. Plus it is a costly surgery, most insurances will cover it, minus your deductible. You should check if you have Medicare, but I heard it covers it. This is the basics here and I hope it helps those with questions. For some it has been wonderful, but it is not for everyone and every case is different in some ways.
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ctbeth responded:
Hi Dawn,

I am so sorry that the SCS surgery went so wrong for you, especially since the trial was so positive.

I am among the fortunates for whom it has helped immensely.

My neuro-surgeon no longer awakens during the surgery.

I know that surgery and recovery differs person-to -person, but I did not find the surgery and recovery very difficult at all.

I do not have a re-chargeable battery, so I do not have that to bother with, thankfully.

Neither do I carry around the controller, but just a magnet to turn it on and off if I want/ need to do so.

we cannot have MRIs, but can have CAT scans.

What is vital to consider is that the sensations cannot be "fine tuned" to the optimal level of pain relief until all of the inflammation from the surgery has subsided which can take up-to three months.

I have read that the horrible and violent vomiting is a rare event. I am so sorry that you had to experience this.

Would you, after some time has passed, be willing to try again, if your MDs could find options to reduce the likelihood of this awful event of vomiting?

Most of us, even with successful stimulation, are not able to discontinue all of our pain medicine; that is not the goal. I have significantly reduced the dosages.

Personally, I don't thin that living it with it takes "commitment" for me. It takes away a lot of my intolerable pain. Once you get accustomed to it, it really does not require much thought at all. Of course, I do NOT charge my battery and have had a few battery changes already. For me, that procedure was a minor discomfort.

Here is the Patient info page from St. Judes Medical:

http://www.poweroveryourpain.com/
 
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ctbeth replied to ctbeth's response:
from St. Jude's Site:

Frequently Asked Questions About Neurostimulation What is neurostimulation and how does it work?

Neurostimulation is an option for managing chronic pain. It works by blocking pain signals before they reach the brain. To do this, a small system is implanted in the body. When turned on, this system sends mild pulses to nerves along the spinal cord, replacing the feeling of pain with a different feeling.


What does neurostimulation feel like?
While neurostimulation can feel different to different people, some describe the sensation as a pleasant massaging sensation. Some have even reported that they simply feel the absence of pain.


Who is a candidate for neurostimulation?
Only a doctor or pain management specialist can determine if you are a candidate for neurostimulation. Good candidates typically have chronic pain in the back, neck, arms, or legs that has lasted at least six months. Their pain is neuropathic (typically marked by burning, tingling, or numbness), and it has not been relieved well enough by surgery, pain medications, nerve blocks, TENS, or physical therapy.


Is neurostimulation similar to TENS?
TENS stands for transcutaneous electrical nerve stimulation. Although neurostimulation and TENS systems both deliver electrical pulses, they are very different in how they work and what type of pain they are designed to treat. A TENS unit is an external device that delivers pulses through pads that are placed directly on the skin over the painful site. TENS is generally not effective for severe chronic pain. More importantly, failure with TENS therapy is not a predictor of how you will respond to neurostimulation.


Is neurostimulation covered by insurance?
Neurostimulation is covered by many major health insurance plans, Medicare, and workers' compensation programs.


Will neurostimulation allow me to reduce my pain medications?
Every patient responds differently. Many patients are able to decrease the amount of pain medications they take. Other patients are able to change the type of medication they take.


Will neurostimulation cure my pain?
Neurostimulation is not a cure. It is a therapy that may help you reduce your pain to a manageable level so you may return to a more normal lifestyle.


Does neurostimulation treat specific diseases?
Although neurostimulation does not treat specific diseases, it has been used to manage pain that comes from failed back surgery syndrome (FBSS) or post-laminectomy syndrome and other neuropathies. Talk to your doctor about whether neurostimulation may be appropriate for your pain.


What steps are involved in getting a system?
If your doctor decides you are a candidate, you will likely begin the process for getting a system. The first step is to have a temporary evaluation of neurostimulation. During the evaluation period, you will use a temporary system to see whether neurostimulation works for you. If the evaluation is successful, you will proceed to the second step, which is to have the system implanted and programmed to allow you to manage your pain effectively. To learn more about the steps involved in getting a system, refer to the Getting a System page.


Can one neurostimulation system help me with pain in multiple areas?
Yes. In order to help with all the pain areas, your doctor would need to place the leads in the proper location. Afterward, your doctor could program your neurostimulation system to cover the different areas of pain. To help you get the best possible results, make sure your doctor knows where your pain areas are located.

What restrictions may I have with a neurostimulation system?
Many patients who enjoy the benefits of neurostimulation report that they can do many things that they couldn't do before they received their system. However, a neurostimulation system does have minor restrictions. For example, patients who have a system cannot have an MRI or receive diathermy therapy.
 
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dawngri replied to ctbeth's response:
CTBeth, are you a patient ambassador from St. Jude's? I had the St Jude's SCS and also used the ambassador program. Unfortunately for me I never had a reply from some one there that has gone through what I have. I am so very disappointed in the outcome. When I saw my doc after the implant and had such worsening pain, he did a fluoroscopy check in the office and saw the migrated wire. He chose to leave it, and told me to let my body adjust to the other wire that remained in place. Unfortunately I worsened to the point of severe leg weakness and constant muscle spasm in addition to chest pain. I was so hoping he would have fixed the migrating wire. Just before the surgery while the nurses came to take me into the OR, he asked THEN if I wanted to just have the wires replaced. Could not believe it. Just 2 days before he told me it was an emergency to remove it. If I ever decide to try the stimulator again, I will go with another doc and get admitted for IV anti-nausea meds. But that would be far down the road. My body has been under such stress since the trial that I developed Beau's lines on my fingernails. I need to go back to work, but am in so much pain. I am so glad the stimulator worked for you Beth. Pain is a horrible thing to live with. I would be willing to travel to another state to see another doc to try it again. But it is difficult to figure out what doc and where.
 
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spinalcordstimulatorjourney replied to dawngri's response:
You know I had the same experience with St. Jude. I emailed two different ambassadors and never had a response. When I talked to the rep for my area when considering the trial I told him and he got right on having an ambassador in my area call me.

I'm approaching 6 months in a few weeks. Putting aside healing from surgery the first 4 months were good. I was getting coverage and lowered my pain meds to 1/4 of what i was taking. All of a sudden a few weeks ago we cannot get coverage in lumbar area and I'm getting these nerve stimulations that are very painful in my ribs and sides. Like a "pinching and "lasso" effect. My PM doctor seems to be unconcerned and no giving me any solutions at this point. I'm very discouraged. Back up to same amount of pain med again.

I had a fusion at L4/L5 in 09 like another reader commented and was labeled as failed back surgery after 2 years of seeing every doctor possible and every procedure out there. This was my last effort to get relief. I refused idea of pain pump. At this moment as I'm typing I'd do anything for some relief. My stimulator has been off for a week.

If interested I've journaled my SCS story to help people considering one even though every one will have different experience.

spinalcordstimulatorjourney@blogspot.com/


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