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Posted 9/13/2010 6:21 AM (GMT 0)
I have cleared the psych evaluation and have just found this site so I am learning more about the implant other than the rose-colored dvd that the company sent.  I have a few questions and the St. Jude patient advocate I spoke with had never even heard the term "breakthrough pain" so I'm a little concerned. 

I was diagnosed with myofascial and facet pain syndrome in my back and neck following a car accident 14 years ago.  I have been through everything (except acupuncture) over the years but have never had surgery, which has been ruled out.  I was on vidocin 24/7 for over 5 years until it tore up my stomach.  I have been on 75mcg Fentanyl patches for almost 3 years.  Of course I've never felt a high from these drugs, but realize that having this much drugs in my system can't be good.  So here I am and I have some questions...

1)  During the trial period (which my doc says lasts about 4 days), how in the world can I know if the device is working while I'm still on the fentanyl?  Obviously I can't stop the med without major withdrawal symptoms so it's sort of a catch-22.

2)  I understand that a 75% reduction in pain is considered a success, but does that mean that I would still have to take meds all the time (although in smaller doses) in addition to having the implant?  And since my stomach was torn up by oral meds, would I just have to be on a lower dose fentanyl patch?

3) The doc said that the implant would be placed in my butt area, but I'm slender with not much padding back there.  Could it be placed in my tummy area so I could continue to sleep on my back?  Has anyone done that?

4)  Are people with implants able to move normally?  A couple of posts mentioned that you couldn't have jerky movements.  I have vomiting spells a couple times a month with my meds.  Wouldn't this affect the implant?

5)  A couple of posts mentioned not driving with the implant on.  The brochure didn't say anything about this.  What else should you not do?

6)  Have the FDA issues been addressed?

7) What is the longest time someone has had one inside them?

I'm sure I'll have more questions, but I want to hear from actual users, not anyone that has a financial stake in the process.

Thanks.

  

 

Posted 9/13/2010 4:47 PM (GMT 0)

Bzblues, Welcome to the forum. Each person responds differently to medications as well as the SCS units. One persons experience will be different from the next. I will try and answer some of your questions. I had my implant put in over a year ago. There are some on here that have had them for 5 years or more. Most people that I have had contact with have a trial period for about a week. The trial for me did not end up with the results of 75 % reduction of pain. I don't like the term reduction anyway as the SCS does not reduce pain anymore that pain meds. They all mask or cover-up the pain. Thus, if the SCS covers up a major portion of the pain, it is possible that you will need less pain meds. To think that a person will be totally off meds just by having an implant is not realist in most cases. On my trial period, I did reduce the pain meds so I would be able to tell if the trial was working or not.

The implant location can be placed in an area agreed up by the patient and the dr. I had mine placed above the waist, on the lower back. It is not affected by sitting or laying and my belt does not come close either. I have heard of people having them placed in the tummy area. After the healing, mine causes me very little discomfort where it is placed. Also after the area healed, I have no range of motion limitations due to the SCS. During the trial and after the implant that is a concern as the leads need time to become set in place. As far as driving, I use mine 24 hours a day and yes I do drive with it on. At first, I noticed changes in the intensity when I moved but that settled down in time. It has never caused me any problems while driving.

I am on more meds after the implant but that was due to being undermedicated before the implant. Some days, I set the control in the morning and leave it at that setting all day, turning it down at night when I go to sleep. Other days, I adjust the settings various times through the day. There are times when the pain is higher than normal and I turn my unit up as high as I can stand it (to a point where I can not walk) and let it zap away just to get away from the pain. Ask away with your questions as it is better know before it is implanted.

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