Hi Chris. I've been off this site for a while, but am interested to find out if you had the stim placed or not????
Mine was a disaster and I have been suffering since it's placement and then removal after 45 days. The leads migrated immediately, causing stim to the chest wall. The symptoms were stabbing chest pain, severe muscle spasms to the point of shaking chills, then I felt like I was hot like a furnace, and finally difficulty walking. Even without using the stim, the symptoms worsened to the point of removal.
My surgeon had NO answers as to why these things happened or are still happening. I went to my NS, he gave me a short term steroid, thinking spinal inflammation. For 2 days, I had significant relief, as I weaned off the steroid, my symptoms slowly returned.
I am worried this is inflammation that will never go away. This would be from scar tissue forming after each spinal surgery. The stim being the one to push it just too far.
I am afraid of Arachnoiditis. Have to wait a month before seeing the NS again.
So what did you do and how are you?
Anyone out there who has had the same problems?, I would love to hear from you.
I only wish I did as well as Beth.View Thread
Beth, thanks for your input. What is so hard to understand, is that the trial was fabulous. I was so happy. Then Bam, the permanent is placed and I was in agony until it was removed. After so many years in agony, having that week of painfree living with the trial makes the pain and hardship now so much worse. On the ST.Judes site, not one patient advocate had been though anything that I had. Out of 5 requests to connect with someone, I had one reply. And it was from a person that had total success. My decision now is, try to go back to work and suffer greatly, I can barely walk at this point. Or find another doc and try it again. I think I would need IV antinausea meds and have to stay in hospital if I did it again. If you know anyone who has had such issues, I would love to hear what they have to say. I had a pain anesthesiologist do mine. Don't know if a NS would be better. My NS doesn't do them, I went with his recommendation. I live in CT and can go to Yale. I'll take any advise you can throw my way. DawnView Thread
Beth, I just saw my pain doc to remove the staples from the surgery to remove my stim. He does NOT believe vomiting for 14 hrs post op caused the wires to migrate, but the techs from St. Jude's say yes to this. The doc does NOT know why I had sever stabbing pain in the ribs and chest with muscles spasms, but the techs say the wires was sitting against the spinal horn causing this. He does NOT know why I was having trouble walking near the end, yet it became an emergency to remove it. All these issues I had with the stim in place have gone now that it has been removed. I still have the muscle spasm to a lesser degree. He wants to talk about trying it again in 6 months and try a different unit. I don't think so. Never with this doctor again.
It is nearly impossible to find a doctor and get the information that will tell me the doctor WILL know the reasons to these major issues.View Thread
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.View Thread
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.View Thread