SCS New Implant
 

I had a SCS implant put in on April 5th for severe sternum costochondritis and have yet to be able to use it. When I had the trial, it was 100% effective. It felt like a miracle that I was able to go hiking, do housework, basically everything I've had to give up for the last two years. Now that I have the permanent one though, they can't seem to program it correctly to give me any relief.

I've been extremely disappointed. The St. Jude's rep was wonderful during the trial. They followed up, answered questions, happy to help. Now that I've got the permanent implant I can barely get phone calls returned, etc.

At what point do I know that this just isn't going to work and needs to be removed? Do they just throw away the data they use about programming during the trial? They kept asking me then which programs helped and which ones didn't while I was in the trial, but now never refer to them. Do I just have to keep reprogramming every week? Is this normal?

I hope they get you on track fast !
My surgery date is may 28th and I hope my scs will be better ! I feel for you!

hi
 

i've had experience with the reps at st jude. you need to ask for another rep and they will give you one who should be able to help. do you feel stimulation in the area that hurts?......pal pete

None at all. With the first rep, I could never make him understand that I needed the stimulation across my entire chest area and he would only program for one side or the other, neither of which came anywhere close to the affected area. The second rep at least understood that I need both sides. So now I have sensation under both armpits instead of one, but nothing in the center of my chest where the pain actually is. I'm getting really worried that it was misplaced, but they keep saying, no, we put it where it's supposed to be according to the x-ray.

Sorry you are having such trouble Arvella. I agree that you need to request another rep. I have two St. Jude stimulators (cervical & thoracic), thankfully my reps are pretty good a very responsive.

They should have all your programming data in your file, but if you are referring to the programming data from the trial that information would be fairly useless for the permanent (except for where to place the leads). Leads are more secure now then in the trial and stimulation is usually a little different. I did have to go back almost weekly at the beginnng for reprogramming, after a while it was no longer necessary as they were able to give several useable programs on each stim. It is not uncommon to need several tweaking sessions at the beginning. Don't give up.

Wishing you the best,
Nanc
:hug:

Hi Arvella
I have a Boston Sci stimulator. There are three reps who cover the area I live in. My first rep was great, spent a lot of time getting the stimulation in my upper abdomen, right in the center where I needed coverage. The initial implant took a long time to cover the right spot. Then my rep was transferred to another area. The other reps tried to tweek as necessary but never quite covered the spot. My first rep happened to fill in in my area and immediately was able to adjust the settings. It's all about patience and experience. Don't give up. Let your doctor know how frustrated you are and ask for another rep,, maybe the territory manager who might have more experience.
Good luck.
Sandy

I had a St. Jude paddle placed in March of this year. I also had better coverage with the trial. Absolutely everyone I talk to says it takes many reprogrammings to get it right. I was told from the get go that I'd probably be seen at least monthly for the first year. It's frustrating, but I wouldn't give up on it now. Look at everything you went through so far.

My rep was super responsive and very sweet. He suddenly quit after I had my first post op programming. I was quite upset because I felt like he knew me and what I was looking for. The rep I have now is equally as nice and emails me back almost immediately, even if it's a night or weekend. He even get a new charger overnighted to me.

There should be several reps covering your area and I don't doubt that you can get assigned to a new one. When my rep's phone number wasn't working (because he quit and I didn't know) I called the number on the back of my ID card. They gave me the number to another local rep, who got me hooked up with the one who would be following me from then on out. If you're not happy with your rep I encourage you to call St Jude and explain the situation.

Hey Arvella!
 

Keep on trooping on!

Do Not Give UP!

PUSH the company to respond to your needs and let them know the rep situation. They are in a sales and service of durable medical equipment industry and NEED to have patient satisfaction reported so others will be just as willing to have their equipment implanted!

Those records regarding the Trial stim settings should be accessible and usable to guide a rep to repeat the stim phenomenon for you, so PUSH!

Hoping and praying for you, :hug:

I went again last week with a new person (3rd rep) and still no luck. Now they're talking about going back in for revision surgery which means having to wait for several weeks to meet with the surgeon, wait for several more weeks to get insurance approval, and then wait again to get the actual surgery and heal from it. I haven't been able to work in over a year and now my money has run out. I was a teacher, so I don't get social security and I had to pull out all the retirement money I had with the teacher retirement fund to pay for the surgery. So now I'm completely screwed. I eat one package of ramen noodles a day and that's it. Is there any way to get help faster? If I could just work again, I'd be all right. I don't have any family and all my friends dropped me the minute I got sick, so there's no one I can turn to.

dear arvella
tried to pm you
did not allow me to

wish you would apply
for any and all help
available
we are in similar
situation with job
i work on a municipal level
i just applied for food stamps


someone who cares

211
 

Pleas find any hotline ..they will direct you correctly...try dialing 211
food stamps for sure,,,
please reach out into your community...there is help
Johanna

Prayin Arvella
 

With hope you will be delivered into the meeting of your needs. We in this house know well how it felt to have so called "neighbors and friends" turn away. They were people we had known nigh unto twenty years, and this was the result..... we did not understand.

Then through our church and our next door neighbors we received blessings well beyond conceivable as our money was running out. I know in our community the local churches provide a collaborative sharing place where folks in need of sustenance items may receive help. Perhaps in addition to the government assistance methods mentioned there are similar helps in your community.

Prayin for ya, :hug:

Try and get your doctor involved. I know he doesn't have much to do with programing and he's made his money but the squeaky wheel get the oil.
Praying for some relief.

Sandy K

Hi Arvella
 

I am so sorry for what you are going thru. It's not right for you to be left like this. I like the input from the others.....don't give up. Indeed, be the sqeeky wheel and don't be afraid to reach out for help. There are lots of caring people in the world.
I'm sorry to hear what you said about your family and friends disappearing. I know that feeling. This pain we all suffer is a silent battle, as most people simply don't grasp what we are going thru. Please don't make the mistake I've made in the past by isolating yourself.

My thoughts and prayers are with you,
Rae
:hug:

Yes, I'm completely isolated. Outside of programming and doctor's visits, I don't have any contact with anyone. I so long just to be able to talk about anything with someone. Sometimes I feel like I've forgotten how to talk and quickly become hoarse and lose my voice when I do try to speak at the doctor's office. I don't have a single day where I feel good and when things get really bad, I can't call any one. My lawn hasn't been mown in over a year and my house is falling apart, but I'm physically unable to do anything about it and can't afford to hire anyone. I can't apply for disability because I was a teacher and, therefore, no in the social security system, but I wasn't a teacher for long enough to build up much in the way of retirement savings or to qualify for help under that system.

Oh Arvella
 

Your situation is so heart rending. I do understand about the isolation, as I for years was consigned to my bed where I watched the world pass by [kinda like the time traveller in H.G. Wells Time Machine]. Then the resulting inability to help around the house did lead to deterioration which was difficult to overcome when we tried to, and did, sell it.

I just wanna reach out and give you a hug, :hug:
at least I am good for that, :hug:

do not be fooled
my friend is capable
of putting a smile on your face
and much more as many
others do

someone who cares