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Old 09-02-2011, 06:36 PM #1
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Unhappy St Jude SCS

Just wondering if anyone here has the St. Jude SCS??

If so, does it help lumbar/lower body---leg and foot pain---?
This is where I would need mine implanted.

What is your percentage of relief?

I am awaiting consultation to have the trial/temporary implant.

Any information good or bad will be greatly appreciated!!

Thank you...

Abbie
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Old 09-02-2011, 11:20 PM #2
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Thumbs up St Jude

Dear Abbie-

I was originally supposed to receive the ANS EON mini by St Jude and had researched it thoroughly in advance of showing up for my Trial Surgery only to learn within the hour prior to surgery that this smiley faced young man walked into my prep room to introduce himself as my rep and, oh, by the way he was from Boston Scientific. I was suddenly in lawyer mode about to go through the roof and cross examined the fellow before anyone proceeded to stick something into my spinal cord space.......

That behind me, I had performed such complete research on the St Jude model, I knew going in it was similar in many respects to the Boston Sci unit with which I was implanted. In my doc's office I had actually seen the specimen implant, realized it was about the size of the Boston Sci, which is about the size of a silver dollar by diameter and three thicknesses thereof. The wiring harness between emplaced computer/battery unit consisted of two wires which would connect to the inserted leads or paddles, depending on the selection made by you and your surgeon. The recharging unit was trasndermal, similar to my recharger for Boston Sci [that reminds me, I need to recharge this evening]. The remote control was a radio freq unit similar to a TV remote, again like the unit I have from the competitor.

I watched the DVD information disc my doc had for me pre-Trial, read every word online I could find, then resorted to speaking with a couple of actual patient ambassadors......... Now THIS is where St Judes has Boston Sci all beat in the marketplace. They planned and provided actual patients for contact via telephone or email regarding questions. THIS REALLY IMPRESSED ME, and you should take advantage of it as well. Both of the patients with whom I spoke were frank and forthcoming even to the point to discussing what about taking care of toilet needs post surgery. Boston Sci has earned an F on this point, even though I volunteered to aid them in this way, I believe they are far more concerned with selling shares in their company than patient care or preparation. Gee, my blog thread has seemingly become the source for physicians to refer their patients if they are considering Boston Sci....... not so good for an up and coming durable medical equipment manufacturer.

St Judes regarding the coverage of lower body trauma and nerve issues was going to be the same as I have come to experience with Boston Sci. The placement of the leads or paddles has everything to do with the targeting of the nerve bundles which address the extremities desired. Regarding myself, I have permanent nerve damage from L5-S1 throughout my entire legs. The surgeons selected T8-T9 space as the go to point for insertion as it would assure potentiality for coverage of the parasthesia affect [the numbing as it were of the nerve desired]. I have achieved programmatically coverage from about my waist down. Certainly, the St Judes model should be able to address this if surgeons, rep, and patient are all on the same page.

One cool thing I give an A+ for my rep was that he intuited my understanding around computers, so he sat me in front of a computer interfaced with my implant and guided me through programming my own bionics. SO MANY of the complaints I have read registered on this topic and the follow on tweaking and tweaking sessions that go on could be avoided resulting in diminished expense, cash outlay, insurance involvement if the patients were ALL allowed to program, with guidance, their own bionics. Use of the stim is hyper-subjective and ONLY the patient knows and understands how certain stim affects portions of their target zone, and whether it is effective or pain producing. If you have any control over this aspect, demand personal involvement with hands on control of the programming. I have four programs in my unit which I established and have never needed a tweak session since my permanent implant surgery 30 June 2010.

From what I understand, the durability and reliability of both products are about the same, and my surgeon implants several different models of product depending on pain doc reference, patient choice, and his professional opinion.

ASK questions of your docs, both pain doc and surgeon to get the most up to date information. Ask to speak with patients implanted with the device if you can, and definitely avail of the St Judes patient ambassador program. The video is a lot of hype and sales. The moments speaking one on one with a patient who has received the unit is GOLDEN.

May you truly be blessed with your experience as I have been,
Prayin,
Mark56
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Old 09-03-2011, 03:56 AM #3
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Smile Hi Abbie

Hi

I have a St Jude Ans SCS. It was implanted in August 2010

I have Failed Back Syndrome. I have pain in my lower lumbar area and down my legs. The SCS works great on my legs but I have trouble trying to get it to work on my lower back. This might happen if I lay down with the SCS turned up fully. But you say for your legs and feet well im surethis could help as Mark also said.

Before I was implanted I too was sent a video. This was from the actual company and naturally they were very one-sided. However, I do find their Reps to be very good particularly my last Rep as he seemed to hit the right places for my legs while walking.

I live in Ireland and the Reps come from the UK so I have to occasionally wait for Appointments for reprogramming. But if you are from the US it seems to be so much easier as they are based there in Texas.

I have the leads placed in my back with a small box in my left upper butt!!
I did have a problem with my internal battery not recharging back in Feb of this year but thankfully that was addressed with a new one being implanted and the company were rapid in sorting that out. I was only about 10 days waiting for that operation.

Well Abbie I'm not sure what else I can help you with but you ask me whatever you want and I will try my best to answer your queries ok

Take care

Jackie
 
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Old 09-03-2011, 04:37 PM #4
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Smile

Thank you Mark and Jackiey!!


I have RSD full body but my doc is mainly concerned with having the SCS to "treat" my lower body. My pain is a constant 9+... often a 10. I've been on numerous pain medicines.... many did nothing... right now I'm on Dilaudid... it seems to be working but I have to take it so often to get any relief.

I don't know what to expect from an SCS... I don't know if it will take my pain away??? OR will it just lower my pain???

I've had tens units and tried the Dynatron STS which both caused my pain to increase and spread!!!!!! And those were electric stimulation on the outside of my body... So I am scared beyond words to have electric stimulation on the inside of my body?!?!?!?!
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Old 09-03-2011, 04:49 PM #5
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Default St. Jude SCS

Hi guys,

I've never heard ot eh St Jude SCS and naturally I don't know anything about it.

I wonder if we start a tread to get a picture of what type of SCS those of us on here have? I'd be certainly interested

Abbie, I hope what ever you decide to have implanted I hope it works out well or you and you don't have to go through the mill for anything else afterwards.

Keep in touch,

All the best, Sinéad xxx
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Old 09-03-2011, 05:09 PM #6
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Heart RSD and SCS

Dear Abbie, as I have written in the RSD Forum on behalf of my Sis Terri, who has full body RSD. Her case advanced too far too rapidly for docs to even consider SCS as a paliative measure for her. She has had bilateral amputations of the legs above the knees and now feels the phantom pain of the missing limbs due to the brain and nervous system trick played on the soul who must bear such treatment. She exists now on Morphine and Fentanyl in such large doses as to pretty much keep her "dumbed to the pain."

Her matter I bring not as a means to frighten, but with hope you are a patient whose situation has been caught early enough that SCS might, just MIGHT provide some stime relief from the wickedness of nervous system pain. I know that monster so well personally in my body, that I finally looked forward to the Trial implant as you too will approach. That is a temporary placement of leads in the spinal cord space connected to the St Jude works you will wear around your waist for up to one week to learn whether ANT benefit comes to you through it. At the end of the Trial period you will either KNOW SCS is for you, or you will be beggin for its removal. As for me, I feared the appointment to remove the Trial leads because so much relief had come my way from the mere Trial episode.

Prayin for ya,
Mark56z
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Old 09-03-2011, 08:26 PM #7
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Default Abbie

My pain doc is using more and more St Judes per his nurses.
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Old 09-04-2011, 05:42 PM #8
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Heart Abbie...

I'm so sorry you are dealing with full-body RSD.
Whether or not to go with SCS is certainly a tough call to make. If your Dr thinks there might be a chance at improving your quality of life via this unit, and if you have confidence in him, I agree with Mark - go for the trial, even if for just a couple of days.

Please let us know which way you go with this, ok.
There have been several with RSD comment on these units and I've seen testimonies go both ways.
It's such an individualized form of pain management, so there's really no way to know for sure. I think I'd lean toward giving it a good test run, especially if Dr thinks this could benefit you. Perhaps the stimulation it offers will come as a welcome soothing relief....and reduce the level of your pain to half of what you currently suffer.
My unit covers the same areas you describe and I've been able to lower the amount pain pills. I'd say approx 75% relief. I still wear Fentanyl patches (50mcg) for a steady flow of pain relief, but it sure beats having to wear 100 mcg patches and take all the hardcore pills all the time. It was putting my liver and kidneys thru the ringer!

You are in my prayers,

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Old 09-05-2011, 12:29 AM #9
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Thank you Mark!! I appreaciate the eyeopener... I've been through the Fentanyl and the Morphine... both SEVERELY allergic -- Anaphylactic swelling of throat and lungs.

Thank you Sophie & Pooh for your kind words!!!

Thank you Rrae for your understanding!!

I guess the first step it to go to the consultation with the Doc.. then decide.
Which has yet to be scheduled...they are going to call me...guess they have to check with my insurance first
My Neurologist thinks the SCS may be of benefit but understands my fears... he did re-iterate to me that is why they do a trial first.

I am fearful that it won't work.... But MOSTLY that it will add to the pain!!! I can't take any more pain!!!! I stub my toe and feel it in my scalp!!!! <--- No joking.

Well I better log of... it's late...

Abbie
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Old 09-08-2011, 03:41 PM #10
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Consultation scheduled for the end of the month....

Will let you know how it goes....

Thanks again!!
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