PM recommending test for SCS...Experiences? Remarks? Thoughts?

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Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/27/2009 2:26 PM (GMT -7)   
Went to my PM for monthly appointment today.

I've been having higher and higher levels of pain, and more breakthroughs lately. I asked what my options were. Dr Matsumura suggested that we could look at higher levels of medications, or look at a spinal cord stimulator (SCS). He uses the Precision Plus from Boston Scientific.

I would sure appreciate the words of wisdom and thoughts from anyone who has a stimulator, and particularly one from Boston Scientific, installed.

In addition, the opinion of anyone who is testing or has tested and not yet installed or not going to install and why not.

I think this is one of them junction points where what I decide is going to have major influence on my life for a long time and I'd like to try to do it right.

Your help is very much appreciated. Thank you.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 5/27/2009 4:54 PM (GMT -7)   
Hi Tony:

I don't have a Boston Scientific...I have a Medtronic RestoreUltra. So far, I'm happy I went forward with the procedure. It's definitely helping and, since my second adjustment, I'm noticing that I'm able to take less morphine for break-thru.

My thoughts are...if he thinks it may help..why not go forward with the trial? You don't have to decide about the perm. implant right now. Give the trial stimulator a shot and do your best to make a fair and realistic assessment of how much it helps with the pain, whether you like the sensation, etc. THEN and only then, will you be equipped to make a decision regarding the perm. implant. Before giving the trial a shot..it's all conjecture.

In terms of the trial procedure..there isn't too much risk..and the actual procedure is quite similar regardless of the device manufacturer. I write about my experience (and have pics) on my blog but please feel free to ask me questions here as well!! ;)

Best,
Danimal
Author of CHRONIC STIMULATION, a blog about living with chronic pain and a spinal cord stimulator (neurostimulator). I would love for you to visit!!

http://chronicstimulation.blogspot.com/


Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 5/27/2009 4:56 PM (GMT -7)   
PS- are your pups labs or lab mixes? They are adorable!! I have a black lab, Mr. B (his real name is Brodie). He is my therapy!!!
Author of CHRONIC STIMULATION, a blog about living with chronic pain and a spinal cord stimulator (neurostimulator). I would love for you to visit!!

http://chronicstimulation.blogspot.com/


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/27/2009 6:36 PM (GMT -7)   
Hi Tony,

I'm sorry to hear about your increasing pain, but it sounds like your doc has a good plan. I personally can't tell you anything about the stimulators as, as far as I know, I am not even a potential candidate for one due to the location of my pain. But I do know that there is a wealth of literature about it on HW, including people's experiences. You might try searching through some older threads. Also, fatherjohn just had his stim trial, and is having the actual stimulator implanted soon, so I'm sure he can & will share his experiences with you, as will others.

Skeye

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/27/2009 6:39 PM (GMT -7)   
Chomp is a lab/Great Dane mix. Koshka is a lab/Border Colllie mix (we think; lotsa signs she could be any number of breeds (how can you tell if you don't know the owners?)). Both were rescues.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/27/2009 6:53 PM (GMT -7)   
Thank you, Skeye, for checking in. I look forward to their thoughts.

I look forward to the thoughts of anyone who has information and is willing to share it.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/28/2009 3:37 PM (GMT -7)   
Tony, As was stated, I am in the process of having the impland of the same unit you described. I did a 7 day trial and after a modification 2 days after the trial started, I was ablt to use the stim to address pain during the day. I tried to keep a regular schedule during the trial to see how I responded. I used the stim 24 hours a day. At night I had it on low to see if sleep would improve, which it did not. I did find that during the day, it distracted the effects of pain and I stopped my methadone during the day. I try not to take much during the day anyway and as I work, I don't allow the pain to stop me much.
 
The PMS was hesitant to go ahead with the implant as it did not address my night time pain which has been my biggest complaint anyway. He finally decided to go ahead with the idea that it would allow me to not to use meds during most days.
 
I just had my appoint. with my surgeon (did my fusion last year) and he also was hesitant. Again the same issues camm up. I was scheduled for the implant on 6/1/09 and just received a call and it has been postponed to 6/8/09. There was a scheduling error at the hospital. I am going to have the transmitter placed above the belt line on my left side. That way it will not effect the sitting and possible discomfort as well as  well as any rubbing of the belt. I am not concerned that some day I may have my shirt off and someone will see a scar or lump.
 
I also asked the important question as to further diagnostic imaging limitations with the implant. My surgeon stated that while the transmitter is implanted, no mri's can be done. Other tests can. He stated that if necessary, the transmitter can be removed, the leads or paddles can be left in place and then an MRI can be done. This seems to contradict information from others but he assured me that he has had patients who he has removed the transmitter and had an  MRI done with the paddles in place.
 
I will be awake for most of the procedure as he does a different level of anestesia at the start and then  will wake me up after the paddles are placed so the positioning of the paddles can be done. The Boston Scintific Rep. will be in the operating room during the procedure so they can hook me up to a computer as soon as the paddles are in place. 
 
As my surgeon knows my work schedlue, he stated that if I felt comfortable enough the following day, I could return to work but thought a couple days off would not be all that bad. Then 10 days later I will have the staples removed. What else can I share that will help you. 

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/28/2009 8:21 PM (GMT -7)   
Amazing. Since I've not even begun, it will be fun to surprise my PM with information he hasn't yet given me about the general procedure.

Really, what you could share if you will is your reaction as you go thru the process; pain at various junctures. Then when and whether the pain goes away. And how much control over things the unit actually gives you. **If** you wish/will, of course.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/28/2009 8:43 PM (GMT -7)   
Tony, during the trial, I likened it to sitting in a chair that vibrates, only your outsides don't vibrate just your insides. At times I would turn it up high to keep from feeling any pain and my wife would comment that my feet would have tiny jerks. I switched the programs back and forth to keep from having one feeling that would get monotonous. What I would do over at this point. I would have shaved my back before the trial as they forgot to. They tape the unit to your back and the tape is tough. I should have asked some of the questions of my PMS that I asked my surgeon. Where the transmitter can be placed? What options of leads and paddles? I asked my surgeon to keep me alert as much as possible. I have a problem with my bladder not responding after surgery. I had 4 cathiters inserted in 4 days and last surgery I had a cathiter in for 3 weeks after surgery. The surgeon is going to push an IV to try and help me out. I will keep you posted. If you have questions, let me know and I will be glad to ask the drs to see if you get the same answer.  

Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 5/30/2009 11:52 AM (GMT -7)   
Hi Tony:

As I said..I don't have a Boston Scientific but all units are fairly similar so I may be able to answer a few questions too..as I am 4 months post-op and had 2 trials. What part of the process are you most curious about right now? The trial procedure and what that feels like? Or the surgery?? Let me know!

Danimal
Author of CHRONIC STIMULATION, a blog about living with chronic pain and a spinal cord stimulator (neurostimulator). I would love for you to visit!!

http://chronicstimulation.blogspot.com/


modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 5/30/2009 12:50 PM (GMT -7)   
Tony,

I don not yet have a stim but I am a candidate and I have been doing lots of research. I am an electrical engineer so I am especially interested in the technology involved. What I have to say next is purely from my engineering perspective not a personal one since I can't speak from experience yet.

The Boston Scientific and Medtronic units are similar in function (delivering electrical pulses) but quite different in the way they go about it. Boston Scientific uses CONSTANT CURRENT and Medtronic uses CONSTANT VOLTAGE technology. Think of voltage being like water pressure and current being the amount of water flow in a hose. Think of resistance as anything that impedes or restricts the flow of water.

To continue the hose analogy, the constant pressure from the street mains is like constant voltage. The resistance is friction in the hose or anything in the stream that restricts the water movement. The current is the resulting flow of water at the end of the hose. This system is constant pressure or constant voltage, the Medtronic technology. As scar tissue forms around the leads it acts as resistance to the electrical pulses. Like partially closing a valve at the hose end. The result is a decrease in water flow or a decrease in current if you will. It is the current that does the work in a stim system.

With the Boston Scientific and any constant current system, the computer is programmed to deliver a constant current under varying resistance. It would be like increasing the hose pressure at the street to offset any partial closure of the hose valve in order to maintain the desired water flow or current. So in the body, as scar tissue (resistance) increases, the computer senses a reduction in current and increases the voltage to compensate. All within programmed limits I'm sure.

I am not a doctor but from an engineering point of view, it would seem to me that constant current would likely deliver more stable pain relief over time as scar tissue forms. I would guess that is why the newer stim designs like BS and now the St. Jude medical device are designed this way. I would encourage you to discuss this idea with reps from both companies to get some direct input for your specific case. Again this is just from an engineer's point of view.

I hope this helps. I wanted to be as fully informed as possible before I made my decision. I am still doing my research.

Hope this helps.

Modelmaker
Degenerative disc disease since 1985, 4 back surgeries, fused from L2-S1, instrumentation. Being treated for chronic pain. Oxycodone 30 mg. IR. Candidate for SCS in the future.


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/30/2009 9:18 PM (GMT -7)   
Man, this is great. I was hoping for a bit of personal experience. And here I get a wealth of technical detail as well. Certainly no complaints from me. I greatly appreciate all the work these posts represent.

Most interested in? Yes, the Trial process and what it feels like.

I'm rapidly building up a wealth of information on both systems, which is even better. Not a thing wrong with having more ammunition than you need to get by, instead of barely enough to survive.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 5/31/2009 10:30 AM (GMT -7)   
Tony,

Glad I could help

Good luck to you in whatever your choice for stim.

Please keep us informed as you go forward as I and perhaps others will be facing similar decisions in the near future.

Modelmaker
Degenerative disc disease since 1985, 4 back surgeries, fused from L2-S1, instrumentation. Being treated for chronic pain. Oxycodone 30 mg. IR. Candidate for SCS in the future.


Ms Kitty
Regular Member


Date Joined Apr 2009
Total Posts : 37
   Posted 5/31/2009 8:39 PM (GMT -7)   
Tony - my spinal cord stimulator is the reason that I am still alive.  I would fight to the death to keep it. You can actually override the pain  with it.
Ms Kitty
Severe diabetic neuropathy, 3 stents, arthritis, R/BK amputee
 
Duragesic pain patches, Vicodin ES, Elevil, insulin and lots of other meds


Ms Kitty
Regular Member


Date Joined Apr 2009
Total Posts : 37
   Posted 5/31/2009 8:41 PM (GMT -7)   
Tony -  mine is made by Medtronic.
Severe diabetic neuropathy, 3 stents, arthritis, R/BK amputee
 
Duragesic pain patches, Vicodin ES, Elevil, insulin and lots of other meds


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/31/2009 8:47 PM (GMT -7)   
Tony, I will explain the actual implant of the trial for you for more of a personal point of view. I had a shot that was to help deaden the area where a plastic tube is inserted. They showed me all the parts before starting and each piece as they were using them. They pushed the plastic tube in and then inserted the electrode into the tube. They then had to position the elctrode but had problems. The had to start over as there was something blocking the electrode going up the left side so they strted over on the right side and then crossed over when they got to the area of the spinal cord that the nerve they wanted to effect. Once they had the elctrode in the general area, they stopped, plugged the electrode into a computer that the BS rep was using. They made sure I was feeling the shock on the left side where I have the pain. They made a small adjustment and then taped the transmitter to my back (shave your back if there is hair). They also taped the wire from the transmitter that was incerted onto the nerve. I could feel the plastic tube and the wire lead as they were pushedin. A few times I flinched as they hit nerves and there was a little pain. After everything was taped up. I then got dressed except my shirt and the BS rep and I went to another room where he programed 3 differnt settings into the transmitter via the computer. He stated there are over a million possible programs. Since I did not know what it was supposed to feel like it was difficult to say what felt better. There is nothing wrong with having them reprogram as it only takes a few minutes to reprogram them. Then I was off, shocking myself and checking the settings. I went several days later and had them reprogram which allowed me to have better control in the foot where I was having the most pain.They can shock you from above the waist all the way down to your foot at one time. You can have it centered in a specific area. On my trial, they only incerted one lead but will do two on the implant next week. My surgeon likes the paddles as he feels they stay in place better and don't travel or move as much. As I stated in an earlier post, later, I can have the transmitter removed if I need an MRI. The paddles will stay forever and the MRI will work with the leads or paddles in.
 
It was interesting as I changed the settings and the intensity to have different effects. You definitely feel the shocks. They set it so when you turn it on to a very low setting as not to jolt you. Then as you adjust the intensity, you can raise it or lower it until you feel the right effect to distrat from your pain. I tried it at night but when I got it to the level to distract from pain, the shock was too much for me to sleep. The BS rep told me to turn it on and keep it very low at night to see if it helped. No value for me. I did notice that the higher I turned the intensity, the more I needed to rely on my cane to walk as I felt weak in that leg and foot. I hope this information helps. 

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/31/2009 11:20 PM (GMT -7)   
Immensely helpful, FJ.

As you can see, I'm becoming a late-nighter myself. Between the change in my pain pattern, and the change in my overall sleep patterns, things are really disrupted here.

Thank you to everyone who is responding; I hope to get back to you individually in the next few days.

Ms Kitty, I realized that you are an amputee, but didn't realize the level of neuropathy. Can I assume they are interrelated?


Heading off to bed. Hope this didn't sound too disjointed. Talk to you later today.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me

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