SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


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Old 06-07-2011, 02:31 PM #11
Rachel4444 Rachel4444 is offline
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Originally Posted by Mark56 View Post
Dear Rachel- We will all be with you through all of this, OK? That is what this forum is all about! Our subforum founder Rrae will be back from her hiatus soon we hope, and when you meet her, you are gonna feel like, WOW with her depth of knowledge, humor, and best of all...... her zowie smilies and such. I mean it is like she is super smilie knowledgeable so we get more than the stock standard .

Now, about the Interferential Stimulator... I was issued that creature as a stop gap, much as you probably have been... the notion was to see whether electrical stim was "apparently" helpful to me. The product came with mere basic programs and would only run for about 20 minutes at a time before needing to be restarted. The battery was only good for about four uses, so I would recharge it daily since I used it every day. The tech who issued it to me told me it was like having a TENS unit on steroids and wow was he right. It did help me..... but it was also annoying. The unit was, applied topically, of course similar to a TENS. The sloppy sticky electrode patches had to be applied to the skin. The electrodes were connected to the base unit via wires which ran out the waist of whatever I was wearing and I usually carried the base unit in my pants pocket, about the size of a large scientific calculator. One drawback was that the wires would catch on anything handy: drawer handles, hooky doos here and there, racks in stores, the seat belt buckle in the car, and every yank would kinda TURN me around. Yanking had its risk of pulling the wires loose from the electrode patches, and when a wire comes free from the patch you are in for a ZAP. Not fun. BUT, I used that gizmo until I was on my way to Trial for stim for sure, and then between the Trial and permanent stim implant surgery. It did help in addition to the meds.

My stim is a Boston Scientific Precision Plus SCS package and was implanted June 30 last year. We are just approaching my first year anniversary with my product, and I have used it constantly 24/7 since first programmed two weeks after my stim implant. As a matter of fact we will probably have a virtual party on NT here on the 30th to celebrate the first birthday of my stim, affectionately named PJ by our cohorts on here, because I am a person with a LOT of faith, so folks thought Praise Jesus seemed to fit me. PJ for short.

I did the programming of my unit myself under the direction of my company rep/tech who sat me in front of a computer two weeks after surgery [after the surgery pain had abated pretty much] and he had me "play" with a variety of settings since my experience with the stime is SO SUBJECTIVE. I knew what felt good and what felt awful. He and I worked together to set four programs in my unit which is accessed via wireless remote, AND here is the best part..... I attribute it to the fact that I set the programs up personally [no one else has written of this experience] - I have YET to require a tweak session with my stim rep. These programs I have are doing the trick for me, and I am well on my way via networking to rejoin my profession. I really want to get back into practice. All I use is my stim and my trusty cushion..... no breakthrough meds. There are times when I have pain spikes, but I turn up the signal on my device so as to overcome the pain completely and keep on keepin on. This is for me a miracle, a blessing, and a gift from God, talented product designers, and gifted physicians.

My recharging of the battery is transdermal and my base computer implanted resides in my right hip area just below the waist. Once the surgical pain healed, I noticed irritation for several weeks thereafter at the implant site until I became accustomed to it, and wore sweats and loose fitting basketball type shorts to feel sorta comfortable until that irritability went away. Now I can touch it and feel no ill effect. I wear my normal wardrobe. Voila'!

Oh, back to recharging. The recharger of this unit is probably the coolest I have seen on the market, as it is a capital D shaped device which sits in a charging base until needed. My remote alerts me to the remaining charge, and I have found that if I recharge when the base unit charge has depleted about 1/3 of the way down the indicator, then it is time to recharge. The recharger is activated by depressing a button on the device, whereupon it begins to emit a beep. The beep continues until syncronicity is established with my implanted unit, and I place it there directly against my skin while recharging occurs. If I practice recharging as I indicated above, the process takes approximately 45 minutes once per week, and I can easily do that late in the evening as I read prior to going to sleep.

Once, I had forgotten to take my recharger out of town to visit our daughter on a trip to her university in a nearby city. When we left town, I had not noted the unit was already at 2/3 charge. We were absent from home several days, and the unit went down to 1/3 total charge, beginning to give me warning signals recharge was necessary. Panic! We finished our visit, threw our belongings in the car and barrelled for home, not taking a leisurely drive which would allow frequent stops to see a shop or take a meal as we normally might. We made it home and the first thing I did was head straight to bed, hit the charger button and started recharging. It took two hours to recharge that time. I have been more cautious about the charging state of my unit since then.

So, to wrap this horribly long post, I feel blessed to have the unit. I feel freed to seek re-employment, one thing that was taken away from me by pain. There are some constraints, and I have committed them to thought as BLAST- do not bend, do not lift, do not stretch arms above the head, do not twist. To this day, I have been careful, because I want to get back into the swing of things, in a big way.... I want to be free to do many of the things I could no longer do with my family, friends, co-workers after that car wreck so changed my life. I wanna dance without a cane, I wanna hike, I already ride a bicycle, I already take in movies in theatres, I already take opportunity to go to restaurants and to visit friends, I already drive my own car again, I wanna earn funds via my skill sets so as to help support my family, a goal which I feel will soon be met. I have started a community group of the unemployed who seek work, facilitating the betterment of their presentation and search/networking skills so they might also find employment, and a real blessing has been seeing folks "graduate" from our group. This is cool, because it started just with our own church folks and spread to include all of the churches in our community. Kind of a pay-it-forward sort of a feel good thing.

One last thing.... before going to any doctor appointment, prepare written questions you have so as to be prepared and not pull away from the parking lot going "darn, I forgot to ask THAT!"

You will know from your Trial whether you will do well with the unit. I had mine for a week on Trial. The Trial insertion went smoothly although not without pain. The removal after a week was a snap..... however the BURNING pain was immediately back with a vengeance, so I had come along with meds and my Interferential Stim to get it going before I left the doc's office after removal of the Trial Leads.

In my prayers you shall remain,
Mark56Z
Hi Mark,

Thanks very much for the reply, that's really useful. I have been away from my computer for a couple of days hence the late reply. I am going to continue reading through the post you directed me to, it is really useful and great to know how the whole process went.
I keep checking the post every day hoping to get my appointment through for the trial operation but no news yet. I am having it done on the NHS so may take a bit longer. Will keep you posted.
Thanks again and great to make contact with you
Best wishes
Rachel
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Old 06-07-2011, 05:35 PM #12
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Default Hi Rachel,

Welcome to our friendly forum, were a good bunch and we like to offer support and a helping guiding hand when we can.
I got my SCS last December and the trial a few weeks before that, my trial didn't go as planned but my Dr decided to go ahead with the implant anyway and boy what a difference it made to my life, I was like a new person, gone was the pale face that was always in pain and in it's place was the old me. I had the implant for left back and leg pain. I have gotten alot more relief from my leg than my back. Within a few weeks I was back walking a fair bit and feeling more comfortable in myself.
My Dr is considering adding another stim for my right side with greater emphasis on my back pain.
At the moment my baca isnt good and im in alot of pain with it but ill get there,

Best of luck with everything and take it easy after the surgeries,
You know where we are if you've any other questions or queries

Lots of hugs

Sinead xxx
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Old 07-31-2011, 05:54 AM #13
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Hi Mark,
Hope you are keeping well? How are you?
I have got my date for my trial SCS operation. I'm having it done on the 16th Aug, bit nervous nut excited about the chance that it may work!

Rachel x
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Old 07-31-2011, 10:10 AM #14
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Smile Excited you have a date!

Howdy Rachel! It is good to know you have a date on 16 August! I hope and pray you receive a full week of Trial use to determine the full effectiveness of the device. While I had it, I wandered through all four programs they placed in the unit, trying different intensities of signal strength, judging how it was helpful.... or not. A couple of the Trial programs were not the best, but they were outshone by tthe othere programs.

Since the Trial was performed with me awake to provide immediate feedback, it was a bit unnerving, AND VERY POSITIVE, as I knew from that moment THIS WAS GOING TO WORK. May you be so fortunate as to feel the blessed peace of that first buzz of the signal to know it interrupts the pain.

Now, as to how I am doing over a year out from my permanent implant..... I drove our motorcoach from the Denver area over three mountain passes to reach the tiny community in which my mother-in-law lives and yesterday the whole of Mom's seven gathered children honored her in style unknown to this community with the "Birthday Party of the Century" the town now calls it. My little family and I provided music and Mom danced with her four sons as I sang Sixteen Candles. She was THRILLED beyond measure and the look on her face.... priceless. I sang O Sole Mio in the Italian, and our daughter Em played a Beethoven sonata all to moist eyes and rousing cheers and applause. This was ALL worth it! Every bit!!

This whole birthday endeavor I could not have done before achieving the permanent implant. I feel blessed... indeed blessed and praise God for inspiring inventors to bring this technology to us so we might each have opportunity to live more fulll lives.

I'll be praying for your Trial and your approach to it for peace, assurance, questions answered, AND that it works for you as it has me,
Fondly,
Mark56:gro uphug:
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Old 08-15-2011, 11:48 AM #15
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Really pleased it is going well for you and it's great the birthday event went so well, sounded like great fun!
I am going in tomorrow so fingers crossed it will work, will let you know when I get home at the weekend.

Thanks so much for your support!
Rachel xx
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Old 08-15-2011, 12:28 PM #16
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Default Good luck Rachel4444

Hi Rachel4444

The very best of luck tomorrow with you SCD trial. I hope you get the relief you so need from it......we will all be thinking of you..

Take care

Jackie


Quote:
Originally Posted by Rachel4444 View Post
Really pleased it is going well for you and it's great the birthday event went so well, sounded like great fun!
I am going in tomorrow so fingers crossed it will work, will let you know when I get home at the weekend.

Thanks so much for your support!
Rachel xx
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Old 08-15-2011, 12:39 PM #17
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SO happy you are keeping your thread alive, Rachel!
We're anxiously awaiting an update.
Try not to become overwhelmed with everything. I recall getting very stressed, when it really wasn't necessary and I put myself thru alot of anxiety.
One thing I wish the personnel would've done - it would have been wonderful if they would've given me the post OP instructions BEFORE the procedure! When you come out of the OR in your twilight daze, it's kinda hard to comprehend what they are saying.

Relax into it and be sure to communicate clearly and precisely to the medical staff in the OR. This is the most important time to get the stimulation exactly where it needs to be.

You will do fine - you are well-prepared for this!

Rae
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Old 08-15-2011, 02:15 PM #18
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Heart The DAZE Post Op

Such is the reason why as Rae posts it is good to have your spouse, significant other, or a family member along who can remember all of the post op restrictions. I do remember being told I was SOLIDLY taped up and to leave it alone...... so we did, then infection developed at the surface of the lead entries to my spinal cord. Yuk. Pus, smell, the bleck which would make someone sick to see it, and it was our daughter who pointed out the fact that it appeared I was "bleeding" in the grocery store as my shirt was wet from an explosion of YUK.

So, take a listener along if you can so they hear the post op blah blah. Try to follow the instrucions. Watch out for infection.

AND

May your Trial be a blessing to you Rachel!
Prayin,
Mark56
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Old 08-24-2011, 03:20 PM #19
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Default Trial done and a success!!

Thanks Rae, Mark and Jackiey for your kind posts!
I had the trial leads removed yesterday, it was nice to get them out of my back but I am missing the stimulator!!
It took a while for them to be able to get the stimulation all the way down into my foot, and in the end I had stimulation down both legs and both feet - which isn't a problem
It has definatly helped with the pain - by about 30% and maybe even 40% at its very best during the night. The swelling and colour and tempreture changes which happen numerous times a day on a 'normal' day almost stopped which was great! I had the trial for a week, and the last three nights with the stimulator were some of the best nights sleep I have had in 18 years!!
I was lucky and didn't get an infection (well not in my back anyway - I got a tooth infection on Friday and right side of my face blew up to about three times its normal size - but hey hoo!!! )
I am now on the wiaitng list and they hope to operate end of November or the beginning of December - sooner the better although I am a bit nervous

I'm going to write down a whole load of questions I have and go back and ask them before the surgery. I believe I may have to have the battery changed every 2 - 3 years which I guess could be a further 20 operations if I live another 40 years!!

Just wanted to say thanks for all your support and any words of wisdom are greatfully received, I don't actually know anyone or have never met anyone with a spinal cord stimulator so I have really gained alot from reading all your stories.

Thanks again,
Rachel
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Old 08-25-2011, 12:36 AM #20
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Heart Rachel!!!!

You go girl! You go for the gold and sieze life as though you are fully in touch with the blessing each day the measured pain management through use of the stimulator can deliver you!!! I pray you reach your personal goal of achievement in pain management since you have elected to proceed, and that through it you become fully vested in the passing forward of your blessings to others who will follow you wondering what is this technology all about! You deserve the best!

My Seventeen Second Miracle today was being at the gas station as a young mother coasted her fuel-less Honda SUV to a stop alongside our Eagle Talon. She definitely needed help getting the next twenty feet to the pump and there I was with cane in hand........ Nope, she would not allow me to push, but she, my wife, Cleo, and a bruiser of another guy joined hands pushing the Honda as I "drove" the powerless vehicle safely to the pump for her fuel. So cool! We all were able to participate in the miracle of helping one another succeed. Then I let her know she had just received her Seventeed Second Miracle of the day and encouraged her to read the book by that title. She was so pumped, I believe she may in fact do so.

Now it is to you Rachel. You are in line to be able to pass miracles of encouragement to others. I KNOW by GOD I would never have been at that fuel pump, able to organize help for her to get into position for fuel had I not received the MIRACLE of my Boston Scientific Precision Plus SCS. Opportunity for you to gain life anew is possible and I pray awaiting you.

Remembering how hard it was for me to "give up" the test leads and return to the PAIN I understand how you will feel as you await your date in line. May you be able to manage and cope with your pain in the meantime.

Prayin for YOU,
Mark56z
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