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Posted 8/13/2013 4:20 PM (GMT 0)
PA told me yesterday I may be a candidate for this procedure(Which I have now dubbed the Android Josh procedure).

Anyone here have the battery back in their back? Supposed to interrupt pain signals...make it to where you feel a "soothing massage" instead of the pain signals...it sounds too good to be true....I mean...if it is that good...why not do the procedure tomorrow...?
Posted 8/13/2013 4:49 PM (GMT 0)
Josh,

You can search the SCS in the search feature - there's lots of past information you might want to look through. There are several people here w/ the SCS and I'm sure they will chime in.

Just in answer to your question (about being too good to be true) - it's the same as most things - there are pros/cons to anything. If you end up being one of the people that is helped by the SCS - then it's a good thing.

But things to think about: It IS a "foreign object" in your body... It does take a surgery to implant it - and, with surgery, there's always the risk of infection.... AND -- most importantly -- some of the people that get the SCS implanted end up being disappointed w/ it's effectiveness. Meaning - it doesn't work for all people.

Not trying to be negative but just give you points to think about.

--Tina
Posted 8/13/2013 5:03 PM (GMT 0)
Josh, the SCS unit does not create a soothing massage feeling, sorry but that PA was way off the mark making that comment. The purpose of the unit it to create a different sensation that hopefully will override the pain signals. These units are like anything else tried to reduce our pain, it may or may not work.If you will use the search feature here at the forum and type in SCS units you will pull up a lot of posts talking about these, They have been discussed a lot. Some people love them, some hate them and have had them not work after being implanted. I urge you to do your homework carefully on these. Remember the old saying, if it sounds to good to be true it usually is. They do a trial before having the permanent one implanted and everyone says that is a pretty rough surgery. Good luck...Susie
Posted 8/13/2013 7:16 PM (GMT 0)
Not to argue a point here, but my SCS often DOES feel like an internal massage (like a massager inside my legs, buttocks, and feet). It also does help with the feeling that pain is being replaced by vibration sensation.

For ME, since I cannot speak for others, I can only say that the lower frequencies tend to make me feeling a soothing massage sensation, but the higher ones feel like I am being stung by bees. I literally hurts!

I also find that my male representative almost always wants to set my programmer with high frequencies and my female rep wants to set it with the lower ones (off the bat). It is just what they feel gives the most relief. The important thing is to share with the rep which settings feel good and which feel uncomfortable. If it feels good, they can often give you several options within the high or low frequencies to choose from. You will then likely use only one or two after a "break in period" that work best for you and you will find a comfortable level of intensity. That can generally be changed by the actual patient and the adjustments help when there are pain fluctuations.

Good luck!
Posted 8/13/2013 7:32 PM (GMT 0)
RM is one of our recent success stories and other than her saying it feels like a massage, she is the first person to ever describe it that way. She is one of the lucky ones for sure. I do urge you to go back through the prior posts here and read about these units. A friend of mine had a unit, he had his less than a year and it quit working and they claim they cannot figure out why it quit working. He had the battery pack removed and opted not to have another unit put in. They do a trial and it is considered a success if your pain is reduced by 50%.

Good luck.....Susie
Posted 8/14/2013 1:27 AM (GMT 0)
I have to agree that the surgery was really rough....very, very rough to be honest. I had complications due to an allergy with the steroids that I would normally have received to prevent swelling. It was honestly awful!

With that being said, I still stand behind my earlier post. This device has given me my life back (in a way). I still MUST take pain meds on a daily basis and I am still unable to do everything I want to do, but I don't often wake up screaming in pain anymore! I don't have to use a walker anymore and rarely do I have to use my cane. Prior to the SCS, I almost never walked anywhere without my cane (at least). Also, my family says I am not the same person to be around because I don't hurt so badly.

So yes, please consider all of your options. It is not a guarantee, but it can work and it honestly does feel like a massage to me right now. It's not a sensation I get all of the time. Most of the time I don't notice the unit is on (because I have become so used to having the stimulation), but when I sit down in my recliner and watch TV with my family, I can honestly say that I feel a great feeling of massage in my back, legs, buttocks, feet, and sometimes even in the lower ribs (which is kind of strange). Lol

Good luck with whatever you decide! Just please know that there are positives and negatives in everything and this "can" be a great tool in the pain relief arsenal if it works for you. Only the trial can help you decide.
Posted 8/14/2013 4:39 AM (GMT 0)
Josh a trial run before actually getting the surgery might be the thing to do, if they are not going to treat your pain with medications, or do surgery or any thing else, this might be the way to go! At least give it a trial run? I know my PM doc talked to me about having one quite a few years ago but it was decided that I had to many areas in my spine that would need to be "wired" to make it practical. So I decided not to go that route. But again the TEN's unit that I had never did anything for me either. Do check into it thoroughly, get all the info you can and then weigh the pros against the cons as they apply to you and then make your decision!

Good Luck to You!

White Beard
Posted 8/14/2013 5:08 AM (GMT 0)
I had the St. Jude's SCS implant on July 9, 2013. it really helps my back pain I have had for over 20 years. it has a battery implanted also that is good for 11 years. Had it done in Seattle , WA at Un. of Washington Medical Center, Dr. Micheal Gofeld. I am still getting use to it. sometimes when I go to the store the automatic doors will turn it on and sometimes when I am just keeping still or walking it will also turn itself on but only on a low setting. I am seeing the doctor and the rep. tomorrow about this. My pain level was always about a 6-8 out of 10 now it is mostly a 1-2. Except today , my back started hurting like hell, about a 9 or 10 level of pain. Will find out tomorrow what is going on with the SCS. Had four weeks of hardly any pain. still take pain meds with the SCS. I am worried it may come on while I am driving and cause me to wreck if it turns the unit all the way up.
Posted 8/14/2013 7:21 AM (GMT 0)
I've had my SCS since mid 2006. I have had multiple problems with it - mainly related to lead migration and the need for multiple revision surgeries - but I would not be without it for a moment.

Josh - what your PA told you is quite correct.
When working on its optimal settings, mine creates a sensation very much like a smooth, rolling massage. It creates a different sensation - a sort of gentle tingling, though it can be very unpleasant, even very painful, if the wrong area is stimulated or if you get a 'bad' program.

It's important to have as long and as active a trial as you can safely have - and also to make sure you are very honest with yourself and your doctor about how much pain relief you really have from the trial unit. Most doctors insist on minimum 50% pain relief (ideally 60, or even 70%) before they will consider implanting the permanent unit. I didn't have to myself, but most will also get you to see a psych to make sure your expectations are realistic and that you will not be badly affected if the trial fails.

Surgery - mine have been variable. My first one barely hurt. I took paracetamol for a couple of days and then was fine. My last lead revision was the polar opposite. I had major nerve root bruising and it was terribly painful.

If you've any other questions, please ask :-)

Laura
Posted 8/14/2013 9:42 AM (GMT 0)
Thanks for everyone's replies and suggestions! :)

Went to the search function and read more experiences.

Kinda hesitant...so will exhaust all further options before I get it done...
Posted 8/14/2013 4:06 PM (GMT 0)
Josh, I forgot to mention that one company that makes these units is Medtronics. They have a wonderful website that is user friendly and very informative.That would be a good place to check out, www.Medtronics.com.

You may want to trial using a tens unit. They are helpful to some people, I loved mine. Your insurance should pay the rental for one. Maybe you can discuss this with the NP or the dr. Yes, you have to do have to do a trial on the SCS unit.

RM that is awesome that your unit actually feels like a massage.

Susie
Posted 8/15/2013 11:48 AM (GMT 0)
Josh, not to diss Medtronics, but mine is a St Jude's and they work differently. Please also ask your provider which brand/brands they use and perhaps how much help that particular brand has been to their patients. There are several makers and at least two entirely different types of stimulation. I don't have all of the information, but my dr explained why he chose the one he did for me because he initially told me mine would me Medtronics and then changed to St Jude's after really researching the best one for me. Each patient is so different and it is good to have a dr who looks at it from the point of what is best for the particular patient.
Posted 8/15/2013 3:05 PM (GMT 0)
Oh...wow...didn't even think that I'd have to see which "brand" was approved.

Also, will have a looong conversation with Dr./PA about which brand is best FOR ME(just hope Insurance doesn't jump in and fudge it all up. As per usual.).
Posted 8/15/2013 4:18 PM (GMT 0)
Josh some of the company's require a psych eval so the process is slow going. Also, you will have to do a trial.Your dr will have a particular unit that he likes best for his patients. Keep us posted.....Susie
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