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Second Discussion on Spinal Cord Stimulator.
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ctbeth posted:
I see that there is a very old discussion on SCS. I'm beginning a new one in this reply to mazzarisi's post.


CTBeth replied to mazzarisi 's response: Wow_ I was also in a car accident in Nov 7, 2007. I have C-4 through C-7 fused and two lumbar levels fused, also.

Yes, many surgeries since then, some plastic reconstruction related to the damage from the accident.

So, you did like the trial stimulator? Is another trial something that your MD will do, or do you have to make a decision whether you want the permanent one or do not?

Do you mind if I ask if you're taking pain meds?

Take care.
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hurtin28009 responded:
I have a stimulator and it has seriously helped me with the nerve pain, and some of the other pain as well, but it really helps with the Sciatica more than anything for me. I do know of others that get great relief from it and no longer take pain meds. For me though I still have pain meds as well as muscle relaxers and a pain patch as well. I only got one trial period but could have had another had I asked for one. Hope this has helped some.

Kathy
 
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HighOct4ne responded:
Hi. My name is Chris, and I am new to the forums. I've been reading about the SCS for the past week or so, and have learned alot (mostly from you, Beth). I have had chronic back pain since 2000, and have tried everything from injections to physical therapy to narcotics and even special made insoles, but nothing helped. I had a fusion of my L-5/S-1 last year, and if anything, it made things worse.
I recently went to a different pain management doctor, and he suggested looking into a spinal stimulator. After doing a lot of "google-ing, I have decided to go for the trial. I am very optimistic about it, and feel as though it is something that could actually work. I use my tens unit alot, but it also comes with many restrictions...and i feel if something is actually implanted in my spine, it would be that much more beneficial. However, a dark cloud rained on my parade today when I read (in several different locations) that it may not be possible to get the procedure done if you had the "hardware" (screws and rods) from a fusion still inserted. In your opinion, is it likely that this will pose a problem, or is it common with those having their "hardware" still intact to still go ahead with the SCS??? I don't have my appointment with the surgeon until next monday, and would like to know to sort of "ease my mind". I don't want to have my hopes up (that something might actually work), only to find out it isn't possible.
Lastly, I want to thank everyone for their posts...I have learned alot from this site especially, and alot of my questions have been answered simply by reading the posts. I hope you may all one day "feel better".
 
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ctbeth replied to HighOct4ne's response:
Hi Chris,

Your neuro-surgeon will give you the answer based upon your particular situation.

My un-informed (of you) guess would be that if you were not a candidate that your Pain MD would not has proposed the SCS: get your hopes up only to be quashed.

I have both a lumber fusion with all of the hardware and a cervical fusion, also with extensive hardware.

According to the neuro-surgeons who performed my lumbar, as the etiology of my needing fusion was trauma, rather than degeneration, I have more-than my "fair share" of hardware.

Only your MD and a trial will tell for certain what sort of relief you'll get and if you'll be happy with the SCS, but, to my knowledge as a patient and RN, hardware should not be an impediment in spinal cord stimulation.

Perhaps a call to your MD's office- even to speak to an RN or medical assistant, would also ease your mind.

I don't think I know anyone, although I'm sure they're out there, who has a SCS who does NOT have fusion hardware.

My email address is BethHuntington@live.com.

If you'd like to "talk" further, do write. If you do, please indicate in the subject, that you're from the Web MD discussion.

Glad you wrote.

CTBeth
 
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mazzarisi responded:
Beth Iam still not sure about getting scs when the trial came out Iexperinced and stil do a great deal of pain I currently take Opana and Neurontin 40 mg opana twice a day 10mg 2x a day for breackthrough pain neurontin 800 mg twice a day Im debatingabout another trial different doctor one whom I trust I wish you well mazzarisi
 
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dawngri replied to ctbeth's response:
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.
 
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cweinbl responded:

Look, it's very easy to determine if you are a candidate for the SCS. First, try a TENS. Wear one every day for six months. If it seems to help, then you might be a candidate for the SCS.

However, that's not enough. Before having a permanent SCS surgically implanted, use the trial unit. The trial unit is essentially a SCS that is worn outside the body, with electronic leads that penetrate the skin and go into the thecal area, where your spinal nerve roots exit the spinal canal. In this area, new electronic impulses can confuse the brain into thinking that incoming impulses are not pain. You should NEVER have the permanent SCS surgically implanted unless the trail unit has made a huge difference in your pain.

Remember; while the risks seem low, complications occur, including MRSA infection.
cweinbl
csw2@bex.net
 
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ctbeth replied to cweinbl's response:
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.
 
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ctbeth replied to ctbeth's response:
I believe that it i strict policy to have a trial before permanent implantation.

The surgery for implantation is commonly done on an out-patient basis.

The sooner one leaves a hospital, the lower the risk of nosocomial infection.

MRSA is more prevalent as an in-patient. The sooner one gets home post op, the better.

Dawngri, I hope you're feeling better. It would be frightening to risk that again. If you do try with a different neuro-surgeon, perhaps you would need to be monitored (in-patient) for a bit longer than is customary to watch for the same symptoms that you endured before.

Take care,

CTB
 
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dawngri replied to ctbeth's response:
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. Dawn
 
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ctbeth replied to dawngri's response:
Hi Dawn,

I live in CT, too!
Yes, I had mine implanted by a neuro-surgeon.

We cannot say MD's names on the site.

I had forgotten and had a post removed and got a warning letter (my bad) because I made mention of an Physician's assistant and a hospital.

On another site which I usually post, there is not that rule and people can share MD experience, so I had not remembered that we cannot do so here.

Interesting, as my first neuro-surgeon, who did my first fusion, also does not do the implant surgery either. It could be the same one! I worked at YNH years ago.

As you had a St Jude's, we surely dealt with the same techs, as there are three that cover CT and I have had experience with all three.

I should say think that having it done again would cause some anxiety, but, could be so well-worth it.

My experience was that I did not undergo an additional trial for my second unit placement. It wasn't just a battery change, but had the entire thing replaced almost two years ago.

If you'd like, I would really enjoy talking to you privately as we have things that we cannot discuss here.

As CWeinbl posts his email address with each post, I would think that there is no rule prohibiting it. If you'd like to discuss matters of private importance (hosp, surgeons, etc) you can either let me know and I'll post my email, or my name so you can find me on Facebook, or you can post yours- I'm okay with it.

Wow, we may even be neighbors.
 
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dawngri replied to HighOct4ne's response:
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.
 
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ctbeth replied to dawngri's response:
Hi Dawn,

I did reply to your email yesterday.

How cool: Chris is also my friend outside of this site! We have daily phone chats.

He had his L5-S1 fusion revised on 13 Dec and came home on Monday.

I'll email you his email address so you can "talk" to him yourself. I'd rather that he tell you about his situation, ok.

After the holiday, we should meet up for tea/ coffee halfway. I would think that halfway would be Deep River or Essex, right?

We are both RNS, about the same age, with similar spine syndromes.

See you on live.com

Love,

Beth
 
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HighOct4ne replied to dawngri's response:
First off, Beth is awesome. She has been such a help in "calming my nerves" for this second surgery, and just overall, a great friend to talk to. Im one of the guys that have questions about everything, and shes always there to answer them, which is greatly appreciated...
Anyways...while in the middle of getting ready for the SCS trial (I even had a date), I went to an (awesome) orthopedic surgeon who found on of the pedicle screws in my spine broke, and that my spine had never fused. It was determined I would be better off fixing the instability in my spine before anything else was attempted. I had the "revision" surgery done on the 13th, and am now healing from that. I like this surgeon much more than the first, and am confidently optimistic this attempt will have a better outcome than the previous one. Time will tell...
If you'd ever like to contact me, my email is HighOct4ne@Comcast.net.
I truly hope you start feeling better after your SCS experience and your pain gets better. Take care...
 
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ctbeth replied to HighOct4ne's response:
thanks for the kind words.

ttyl (today)

for 1 week post-op, you're doing great!

xo to caren and the girls


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