Well, up until today things have gone pretty well so far with my trial SCS. I had some kind of harsh stim from the right lead in my ribs, but found a way around it by unplugging that lead, so that I was getting good coverage in my left leg and fairly good coverage in my lower back. Went to bed last night and didn't need the SCS at all until this morning. I plugged in the left lead, and....nothing. No tingling, buzzing, warmth, nothing at all. Boo hooo!!

The right lead produces so much rib stimulation that it practically makes me jump out of my skin, so today I haven't used the unit at all. The pain is back, of course. I would've called my rep, but tomorrow I have an appt. with my doc where they're going to take everything out anyway (can't wait to get these itchy bandages off!). I'm guessing that somehow during the night I turned the wrong way or something and it caused the leads in my spine to move. Oh well, at least it worked so that I know it's going to be something that CAN reduce my pain. Sure would have been nice to have one more day of relief, though.

Today's kind of a rough one for another reason, too. It's the anniversary of the death of my sweet little boy who passed away due to complications of cerebral palsy. Even though it's been several years, the grief is always there. You just don't ever "get over" the loss of a child. Tomorrow would have been his birthday...he died the day before his 14th birthday, so this time of year is kind of a double whammy for me. I just keep remembering that "The will of God will never take me where the grace of God cannot keep me." I do know that my precious baby is in heaven now, able to run, jump, play, and make noise, like he couldn't do here on earth! But oh, how I miss him.

Praying that you all are having a peaceful day....
Jan

You precious lady, Jan, and your little boy..... you bring tears to my eyes, for in loss any of us has suffered, while the understanding may one day dawn, the emptiness of that special place where we hugged our loved one remains. Cleo and I know through miscarriage of a twin and the passing of our stillborn granddaughter a year ago the day before Samson came this year.

Now with each we can respect that both must have been in trouble. We know for sure our granddaughter was. And the tears pour just now as I think of your baby. We will hug our children and grandchildren as we go to glory.... and it is amazing as I have set with elder friends of ours and my paternal grandma, each has had the sense of approaching glory.... such an open window on the forthcoming.......

I am probably asking a question you have already answered, but since you unplugged the one lead, have you tried plugging the other into that same plugin? Thus, you might test its running, although the program might not be quite what you had it set to emulate. Maybe if plugged into the other socket, it might function? Probably done that already. You see, since we are both Boston Scientific, I imagine your Trial unit is in a white velcro soft belt around your waist complete with the little pocket for the generator. The same type generator with which you will be implanted is used in the Trial, by the way.

HUGZ APLENTY,
Prayers too,
Mark56zzzzzzzzzzz

My dearest Jan

I am thinking of you this sad day. The death of your young boy must truly be heartbreaking. One never gets over it. I remember my mother RIP telling us she lost a son at 9months from Down Syndrome back in 1956 some years before I was born. And even after many many years she recalled to us his death it still had her in tears. I am so sorry for your loss. He is indeed up in Heaven looking down on you and saying 'I'm ok. I'm happy now. You be happy too for me'

I have a daughter who has a moderate learning disability. She is 19 and here on holiday with us. Children with Special Needs are sent to us because God believes we are strong and we can cope with whatever happens. So Jan I believe you were chosen because you are special. Never forget that. Never forget your little boy. I am praying for you today.

I'm sorry your stim stopped what a bummer. But at least you know it DOES work. Hopefully now you won't have to wait too long for the perm one

Thinking of you

Jackie

I'm so sorry to hear about your son, I can't imagine the pain of losing a child and how much this day still must hurt you. But he is very lucky to have had a mother who loves him so much and you will always have a special angel watching over you. I will pray that God brings you and your family comfort today.

In regards to your SCS, that is strange that it would stop entirely. I would think that if a lead moved you would feel the stimulation somewhere else rather than not feeling anything at all. Are you making sure that you're plugging the lead in the right spot, it's pushed all the way in, and the batteries aren't out? Either way, though, at least you know it works for you and hopefully you'll be able to get the permanent implant scheduled soon.

Thanks so much for the kind words regarding my son. I can't tell you how much that means to me. Today would have been his birthday, so I can imagine a big party going on in Heaven!

Got the leads out today, so am feeling a little less sore. I had tried everything to try to get the thing to work again--replaced batteries, switched leads around to plug into each socket, tried every combination I could think of, but the left lead was just dead. I think it must have broken or something, which was what the doctor and Boston Sci. rep thought as well. But at least now I know that it will work to manage my pain, if they can get everything placed correctly. I'm still going to think it over and do a little more research before making that final decision. It sure helps to come here and benefit from everyone else's experiences, too!

Gonna go take a shower and a nap now that all that tape and bandage stuff is off me.

Hugs,
Jan

You had a successful trial Jan! Now for that restful sleep without bandages and tape. May your pain be minimal as you await next steps.

Prayin,
Birthday's in Heaven,
Mark56zzz

Thank you for sharing something so very intimate and personal...... we love you and your family here.

...I 'stumbled' onto this thread.
My heart and prayers go out to you, dear Jan.
Quite interestingly yesterday (7/30) was my dad's 90th birthday and my son's 22nd one. My dear dad is still going on powerfully for Christ as he has since HE was 22 years old, on the battlefield of Normandy, fighting in WWII, and got shot by a German 'burp-gun'. He hit the ground, put his helmet over his head and had a lot to think about...and that's when he made his decision to follow God (it's also the closest he's come to death...two German soldiers came up and poked at him with their bayonets. To this day he says if they'd had any idea he was alive they would have run him through to the ground).

Time makes a big circle and now his grandson turns 22...and is so much the opposite.

My heart grieves for you...I have definitely heard you never 'get over' such a loss.

Is always difficult, bitter, sweet, emotive, spiritual to the nth, a time of receiving as others gather around and provide the Father's comfort. I often recall Christ and his grief at the passing of Lazarus. Then I am reminded of the tears which fall from the Father's eyes at the trouble of the "least" of us. We embrace one another in outpouring of Love here. Agape is good.

and I am blessed,
Mark56

I've been gone for a week and am just now seeing this thread.
Oh how my heart goes out for you. You are a precious woman through and through, having suffered the ultimate pain of losing your child. I am so very sorry.
You have so much spirit in you. It shows thru in your writings. Your humor, your caring nature and so much more. You also have the gift of music in you. I truly believe music is a powerful vessel which reaches thru to the spiritual rhelm. Music is a beautiful thing and it keeps us connected to our loved ones who have crossed over to the other side.
I have a younger brother who is there. We used to play our guitars together and laugh all the time. I lost him 10 years ago and the sadness is always there, but I look forward to the day when we will be reunited.

How wonderful this day will be for you and your son....
God bless you, Jan....and also your precious boy...



Rae

Wow....you all are just so amazing. I truly feel your prayers and love in your messages. It's horribly hard losing our loved ones, but not having to go through it alone makes it so much more bearable. I love the saying, "A sorrow shared is cut in half, and a joy shared is doubled." So true. I do know that I will see my sweet boy in Heaven one day, and he will be able to do the things he couldn't do here on earth (he was quadriplegic, had seizures, cortical blindness, and many other challenges). He is no longer in pain. He lit up my life and the lives of so many others, just with his smile and innocence and sweet spirit. What a gift he was, and continues to be.

Thanks to each of you for making these couple of days not quite as painful. I'm sending you all humongous hugs...
Jan

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