Hi All,
I am scheduled for the Spinal Cord Stimulator Trial and was wondering if any of you have had this, and what I can expect. I am a little worried because I will be awake for this procedure. Any input would be greatly appreciated.
Best wishes for a pain free day!
Angela
One day there will be a cure!
I have had the trial and the implant and there will be some discomfort
but for me it was tolerable. The injections to numb the site was
painful but temporary. I had some adjustments that were made during
the trial because the leads slip and I only had it two or three days
because I started to get an infection at the site where the catheter
entered my back. All was fine. There was some sorness at the site
like it was bruised, The worse part was being unable to shower or
bathe. It was also uncomfortable to sit because I was sore. Hope
this helps.
Nicki
On Mar 6, 2008, at 10:55 AM, AT2007 rsds-cpt8014@lists.careplace.com
wrote:
Thank you so much for the info. Has the implant helped you much? Did you
have the permanent stimulators attached to your spine(paddles) or did you just
have them placed like the trial? Again, thanks for the response! Angela
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I have had the trial and the implant and there will be some discomfort
but for me it was tolerable. The injections to numb the site was
painful but temporary. I had some adjustments that were made during
the trial because the leads slip and I only had it two or three days
because I started to get an infection at the site where the catheter
entered my back. All was fine. There was
some sorness at the site
like it was bruised, The worse part was being unable to shower or
bathe. It was also uncomfortable to sit because I was sore. Hope
this helps.
Nicki
On Mar 6, 2008, at 10:55 AM, AT2007
wrote:
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Yes it helps. Sometimes more than other times. It takes the “edge” off.
The leads are anchored permanently to my spine and to date I have not
experienced them slipping/moving. The sensation does change with body
position such as sitting to standing.
My implant was done January 2006 and in August 2006 a driver ran a
stop sign and hit me on my side and I have had chronic pain in my back
since. I WISH the stimulator would reach the areas of my back pain.
Mine is for my lower extremities and covers my left leg from my toes
up to my tailbone and part of my right. My left was the issue.
Everyones result is different and outcome is different. I look at it
this way—if you have exhausted ALL other options and you are not
able to live your life the way you want to then it may be worth you
trying the stimulator.
If I have left out anything or you have any questions just let me know.
Nicki
On Mar 7, 2008, at 7:27 AM, AT2007 rsds-cpt8014@lists.careplace.com
wrote:
Hi Nicki,
Thank you again for your response. I have RSD in my right leg and my left
arm and hand. They are going to implant the stimulators for both. I have
exhausted all other options that I know of - blocks, meds, pt, reiki.
I am sorry to hear of your accident. Is there any way they can change your
stimulators or add another to cover your back? I don’t know if that is even
an option.
I did have one more question for you…I know that I will be awake for the
trial surgery, but when and if they do the permanent implant, are you awake for
that as well? And if so, is it pretty much the same as the trial or worse?
Thanks again for your input! I hope you are having good days!
Hugs…Angela
In a message dated 3/7/2008 11:51:03 A.M. Eastern Standard Time,
rsds-cpt8014@lists.careplace.com writes:
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Yes it helps. Sometimes more than other times. It takes the “edge” off.
The leads are anchored permanently to my spine and to date I have not
experienced them slipping/moving. The sensation does change with body
position such as sitting to standing.
My implant was done January 2006 and in August 2006 a driver ran a
stop sign and hit me on my side and I have had chronic pain in my back
since. I WISH the stimulator would reach the areas of my back pain.
Mine is for my lower extremities and covers my left leg from my toes
up to my tailbone and part of my right. My left was the issue.
Everyones result is different and outcome is different. I look at it
this way—if you have exhausted ALL other options and you are not
able to live your life the way you want to then it may be worth you
trying the stimulator.
If I have left out anything or you have any questions just let me know.
Nicki
On Mar 7, 2008, at 7:27 AM, AT2007
wrote:
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Angela,
I had a trial stimulator back in September of '07. It was made by Medtronic.
It was misery for me because it caused more pain in my leg, ankle, foot, and toes when I would turn up the stimulator. When I turned down the stimulator, I would have increased regular pain as an residual effect of the stimulator being turned on.
Now, I am waiting for my insurance company to approve a different trial stimulator by Precision Plus. I am very excited about this unit. It works majorly different than the Medtronic. As a matter of fact, I call it the Cadillac of the stimulators.
My pain specialist has not only done every bit of research he can on stimulators, he helped build them.
That is why he knows best of which type I need.
The Medtronic only stimulates one area with one lead. The most leads that they can put on one unit is two.
With the Precision Plus, one lead can stimulate four different areas and the doctor can fine tune which direction each stimulation goes to actually pinpoint the nerves to block the pain.
I hope that this information is helpful not only to you but to others also.
God Bless You and Keep the Faith,
Lori
Hi Lori,
Thanks for the info. I too am getting the Precision Plus. It’s good to
know that you think it is the Cadillac of stimulators. I go in for my trial on
Thursday. I will let you know how it is. Thanks again for the info.
Hugs…Angela
In a message dated 3/18/2008 12:44:11 P.M. Eastern Daylight Time,
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Angela,
I had a trial stimulator back in September of '07. It was made by Medtronic.
It was misery for me because it caused more pain in my leg, ankle, foot, and
toes when I would turn up the stimulator. When I turned down the stimulator,
I would have increased regular pain as an residual effect of the stimulator
being turned on.
Now, I am waiting for my insurance company to approve a different trial
stimulator by Precision Plus. I am very excited about this unit. It works majorly
different than the Medtronic. As a matter of fact, I call it the Cadillac of
the stimulators.
My pain specialist has not only done every bit of research he can on
stimulators, he helped build them.
That is why he knows best of which type I need.
The Medtronic only stimulates one area with one lead. The most leads that
they can put on one unit is two.
With the Precision Plus, one lead can stimulate four different areas and the
doctor can fine tune which direction each stimulation goes to actually
pinpoint the nerves to block the pain.
I hope that this information is helpful not only to you but to others also.
God Bless You and Keep the Faith,
Lori
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has anyone read about the possible spreading of RSD with use of these stimulators? Also…I hear that when the battery dies you have to replace the whole thing…as in its not simple task? Best of luck. Maybe it will work for you.
Jen,
I actually have read of the possible side effects of the stimulators. I also have done one stimulator and shared that experience for all to read. Even though I did not have a good outcome with that one, I am willing to try the next one that is also the top of the line.
Also, my pain specialist told me that there is way to recharge the battery without having to replace the entire unit.
I am not willing to stop trying since I know that something may not work for one person but may work for another. That is why all of medicine is considered “practice”.
Wishing a pain free day to everyone,
Lori
I had my first SCS implanted in August 2002. When the battery goes out, they usually just replace the battery. I have had the wire leads replaced. I have had the wire leads, which can be placed by many different types of doctors who have had the training. I currently have the paddle leads which apparently must be placed by a neurosurgeon. The paddle leads do not use as much battery power than the wire leads. They are also apparently “stronger” than the wire leads. They have come up with a rechargable battery now so you don’t have to have surgery whenever your battery goes out. When I had the wire leads, I went through 2 batteries in a matter of 20 months, but I also had it turned up all the way, going 24 hours a day, and had it set on a setting that used a lot of battery power. Now that I have the paddle leads, the battery is a little larger, and I had it implanted in May 2005, and am still on my first battery. From what I understand, with the rechargable batteries, the patient now gets a much more advanced controller than I have, and they can have MANY different settings, that can be changed in a matter of seconds, whereas if I want to have a different setting it is a better idea if I have a rep reprogram it. With any surgery or procedure, including a blood draw, those of us with RSD are at risk of it spreading. When we are considering a spinal cord stimulator (SCS), a drug pump, lumbar blocks, getting a flu shot, our blood drug levels or whatever the latest treatment is, we need to take into account the risk we are taking that the RSD COULD spread. There is actually very little known about RSD by the medical profession. I find that those of us who have it know more about it than SOME of the doctors who treat RSD. There are doctors who say it doesn’t spread at all, or from arms to legs, or whatever. Those of us who have global RSD know that it can spread like this. At first, I was afraid to take any meds, or do any treatments because I was afraid that I wouldn’t have anything when I got older or my condition got worse. I then realized that I need to take advantage of everything I can get, now. My SCS helps me a little, it takes the edge off, is it worth the surgeries? In my opinion, any little bit helps, especially when my pain was usually at a 10. If the SCS, the 20+ medications, & the lumbar shots I get every once in a while, brings my pain down to a 9 1/2, then I think it’s worth it, because it’s that much pain I don’t have to deal with. Some have gotten much better results than I have & have even been able to go to work.
One thing I think is MANDATORY with whatever treatment we decide to try, we have to go into the situation with the mindset that this WILL help. If you think anything else, you can psych yourself into making it NOT work. I’m not saying that we should be PollyAnna or delusional and think that we will be cured, because I don’t think we should set ourselves up for depression. I’m just saying that even though we may be scared, which I have been a number of times before I have had a procedure or started a medication, I tell myself that this will work somehow. It will reduce some of the pain or offset some of the side effects, or whatever the situation is. I give the new thing a reasonable amount of time, and then I look at the results with realistic eyes, as much as I can. This roller coaster ride that we are on called RSD can be VERY difficult, and I in no way minimize that, but I do have a lot to be grateful for, in regards to the RSD, and I make sure I remind myself of that, usually at 3:30 or 4:30 in the morning when I can’t sleep for the countless night in a row.
When you are looking at information on RSD on the internet, remember that you can find another website, by another doctor or patient that says the exact opposite. The “wonderful” thing about RSD is that there is no consistency in the symptoms, side effects, or even the treatments from patient to patient. We many share SOME with one another, but none of us spread the same way, react to the treatments, etc, the same. We can only do what’s best for us. If any of you have any questions for me or completly disagree with me, you all are welcome to send me a personal message.
I wish you luck in your decision!
Hello everyone,
I thought that I should write and let everyone know that I just undernwent the Precision Trial Stimulator. My doctor didn't think that it was going to be successful at all since I have failed at all of the injections and blocks that he attempted to ease my pain.
I am sure that you have predicted that it worked. Well, let me tell you that you are correct. What was absolutely astounding was the amount of relief I received. I have been ranging from an eight on the pain scale, as the lowest number I've had since being diagnosed, to a ten on my worst days and climbing off the charts at times. I have had illness, stress, and sometimes little accidents or overuse of my legs to cause me to be completely inconsoleable by anyone or anything. Only time could tame it down.
That is why I am so excited to tell everyone that I reached a new low on the pain scale. I was actually able to say that I was at a two the last couple of days.
The bad news is that my trial came to an end today without warning. If you get a trial stimulator, make your doctor puts in writing what the window of removal is for your own sanity.
I am truly thankful to God that I went through with the trial. Having an 80% improvement on my pain was incredible while it lasted. I should be receiving my implant at the end of this next week. My insurance company is attempting to tell my doctor that he could procede with the implantation, because of how high my improvement was, and not to worry about his reimbursement.
My doctor is a very big advocate of you knowing what anything and everything is going to cost you before you have a procedure. It seems silly when I've told him that we will pay the difference if he will just go ahead with the procedure. He is too stubborn to do that for me.
I hope anyone else considering this procedure and has any questions will feel free to email me. I will help you in anyway that I can.
Go bless everyone,
Lori