as a few of you know my SCS is no longer working and is off. it was not causing any further pain, so we were not going to have it removed. obviously because we don't want any more surgeries. but over the last week or so , the pack, on my left buttock. has been driving me crazy.( it takes a lot for something to bother me, as a lot of us) and now we are thinking about having it removed.
any thoughts?
should i just leave it in, in fear that the surgery will make it even worse??
or bite the bullet and have it out, i am only 18.

Dear T-

You know the range of emotion which surges through each of us knowing someone so young as you experience ALL of this difficulty. Our comments have betrayed our deep concern for you. Your family members and your caregivers are the first line of conscientious opinion which should bear upon the horribly difficult decision you face.

It is so VERY HARD for you to think in terms of what the long term may bring as I should imagine we are all of like mind hoping for you a long, joyful, healthy, and far less painful passage through humanity. What can we say?

Truly, we pray for you in this, and will continue to do so. Even so, there is an ultimate thought you approach with those I mention above. Being conservative has tended to be my approach as guided by my caregivers, and do understand this PLEASE..... in the almost seven years since my auto wreck on I-70 in 2005, I have endured surgery of varying types 29 times to put Humpty Dumpty back together again. As for ME, I have approached every time in the OR as fraught with risk..... why else would the physicians and care facilities have each of us, or maybe in your case, your parents sign off to the consent forms hoping to pull in place protections around them.

Even when it was time for my implant, as I have written time and again, I approached it with trepidation to the last night before the procedure. Everytime hurt. Some of my surgeries caused damage either from procedure or from scarring which produced life long lasting effects, nerve damage and such. Others granted me the means to be able to type this with both hands, though my doc feared I would lose my right arm because the nerve was all but dead before still another surgery. Then you know my blessing I count from the ultimate permanent implant surgery which has helped me regain some of life thought lost, such as regaining the abiltiy to practice law for others and not just for the company my family and I founded to help others who are like us here.

The future is yours. I would do nothing without prayerful consideration, but then that is the way I am assembled. I would consult those family and caregivers I first mentioned for they are the ones who KNOW your case. We who populate this special place would be ill equipped to recommend any particular course of action for you. For instance, working with your doc, you may find the present symptom is either manageable or a passing phenomenon. Thus, T, for you I leave the thoughts I experienced in my situation, realizing without appropriate care I would still be trapped full time in my bed of pain and perhaps missing an arm. I relied on prayer, on family whom I know absolutely and trust, and on my caregivers, all of whom are beyond reproach. Ultimately, the decision may well come down to you and your parents having a heart to heart discussion with your doctor.

Praying for you the absolute best T,
Concerned for you,
Mark56z

Mark is right, this is a decision only you and your family can make. I was just wondering if your doctor might recommend only the battery be removed and the leads were left in place? This might aleviate the pain on the left buttock, but not cause the pain of tampering with the leads.

I'm sorry you are faced with this decision.
How long did the SCS work before you noticed it wasn't doing it's job anymore? I've heard of 1 or 2 others in the RSD forum who still have their units in them but are not using them.

Have you noticed your RSD spread since this was installed? You might ask Dr what he thinks - if there are risks of spread.

If the battery is causing you this much discomfort, I'd probably want it out also.....but this is you and the doctor must ultimately decide.

Best Wishes in whatever you do!
Please keep us posted....

Caring,
Rae