LEDs on Medtronic device
 

Hi all,

I have a Medtronic system implanted and have an Itrel EZ 7434A hand held device.

I have noticed what I believe is a change in the LEDs on the back of the device but I can't find my patient user manual.

Does anyone have a scanned copy of the LED sequence that they could email me? I have searched the internet with no joy. I also don't want to bother my surgeon until I work out if there is actually a problem, as it may be that I am just having a blonde moment and the LEDs are perfectly normal!

I have tried contacting Medtronic in the UK and whilst they have been very pleasant, they have just referred me back to my surgeon.

Any help would be gratefully received!

Pharpar

Hi there
 

Hi Pharpar

Im glad you visited this forum because some of the lovely people here do have a Medtronic System implanted like you.

I have an Ans St Judes model which was implanted 6 months.....

Im not exactly sure what your LED's actually do, is it that they tell you when your unit is on? or your changing a programme? or that you are recharging?
Have you noticed that your stimulation has changed, is it weaker or stronger? these are just some things that have sprung to mind while Im reading your post.
But as I say there are some great people here who will definitely be able to help you Im sure.

Unfortunately for me when I had a problem with my LED light two weeks ago it was on my Charger......and it wouldnt RECHARGE my battery hence I had to have a new battery replaced last week......

I do hope you get the answers here but if you dont you will definitely have to speak with your Surgeon or your Rep if they are available.....

Good luck

Jackie :)

Welcome Pharpar!
 

It's good to have you!
I have a medtronic, but not the device you are referring to.
We'll sure keep a lookout tho....

I wonder..... if perhaps you could find your particular Itrel Model online....maybe the manual would be available for download, since you can't find your hardcopy? A shot in the dark perhaps...you did say that you've already tried searching the net tho.......

If you have a moment, we'd love to know how you are getting along with your unit? How long have you had it, etc? Getting good coverage?
We are always interested in how others are getting on with their units.

Wishing you the best!
Rae

Hi, Rae and Jackie, and thanks for your posts.

I've had the system since 2004, for RSD in my right wrist and hand. It helps some but I still have bad times when I need medication as well. Over the past year or so, I've also developed discomfort in my neck and shoulder on the right, which I think is from the pulsing. At times it's so bad that I have no alternative but to switch the system off. I've been back to the pain clinic and they showed me how to do self acupuncture which helped for a while but doesn't any more.

My partner rang Medtronic in the States last night (I'm in the UK) and told them the lack of response I'd had in the UK, so I got to talk to somebody. The LEDs on the back of the patient programmer indicate battery charge and they confirmed that the internal battery is getting low and needs replacing. I guess I now have to make the decision as to whether the pain relief is sufficient to warrant having the battery replaced, bearing in mind the neck and shoulder problems. I also get pulsing sensations where the battery is implanted and it can be quite uncomfortable at times, as if it turns.

It's great that this site exists - when I first had the implant, it was really difficult to find anyone to share experiences with, particularly here in the UK and particularly for upper limb problems.

If anyone has any questions, I'm happy to answer.

Best regards

Pip

Hi Pip :)
 

Hi Pip

Im glad to got to speak with somone in relation to your LED lights and that you now know what is actually going on.

Its great to read that you have had 6/7 years life in your battery thats good to read. Im sorry though that you are experiencing such pain from the pulsing. I can understand why you would want to turn it off. Ive only mine implanted since Aug 2010 (Im in Ireland BTW so relatively new here for us)and occasionally I have turned mine off if I feel it a bit overwhelming.

But I suppose at this stage of your implant you should probably now try to find out what is actually going on with your neck and shoulder. Is it related to your SCS? is it another problem to cope with ? all these I suppose will need to be addressed. Its a big decision deciding whether to replace the battery and continue with the SCS and I hope that you get some answers very soon.

Take care

Jackie :)

Hi Pip
 

Jackie's wisdom is right on point, to get into the doc and examine whether other issues are manifesting in the neck and shoulders before you make real decisions whether the battery replacement is worth the bother. As for me, I can tell you that were mine to go out on me I would be on it in a heartbeat with my doc as I have enjoyed such pain relief with the unit thus far. Mine is Boston Scientific.

May all go well with you,
Mark56:)

Hey Pip!
 

I love meeting folks from across the pond!
We actually have several here from the UK and Ireland!

So you have a cervical unit....
Jackie, Mark and I have lumbars.... you know I was wondering, since you have mentioned RSD.....
My 'official' diagnosis on my SCS surgical charts say 'RSD/CRPS'....yet I've been referring that horrid pain to more of a peripheral neuropathy type of thing......but I've been dealing with issues (especially lower back) that might indicate a possible spreading of the RSD.....
Has anyone made mention to you that this could be the case with your neck and right shoulder? Or is it a totally different type of pain/discomfort you are experiencing?

The possible RSD spreading in my case is brand new to me and I'm going to be talking to my Dr on this next week to see if indeed this might be what is going on. At first, it was lower back piercing pain....but as of late, it's been more of a 'burning' (all too familiar :eek:) that seems to be trying to creep up in to my torso. Until now, that burning pain was only in my legs, of which, My SCS has done a wonderful job of covering over the pain....with exception of BT meds......

Do you think RSD could be spreading?
I'm going nuts over this prospect in my scenerio!

Glad you've found our forum. Please stick around! We truly do all we can in helping one another.
Like you said, it was very very difficult to find online discussions of SCS's....

Rae
:hug:

Rae after just reading your last post it kinda popped something into MY HEAD now too!!!

Over the past few years Ive had this 'burning' at the top of my shoulder just where it attaches to my head:eek: you know the pain you would get if you had maybe a crick in your neck! or sitting at the computer for a long time?

But Ive noticed it has gotten worse lately for no apparent reason.......even if Ive just been out walking....now YOU have made me think!!! after what you said about RSD spreading.....I dont think mine is RSD more Neuropathic(and surgery related) but still..............hmmmmmmmmmmmm something I should probably be asking questions about.......see how much help you are here!:hug:

Hmmmm indeed....
 

Jackie I didn't know you had this nagging pain going on.
Well, like I said, this is 'brand new' to me.....and I don't want to jump the gun, or get all over-dramatic about it, but it really helped me gain a bit more insight when I popped over to the Spinal forum here at NT.....

As a matter of fact, I will go over there and get the link to my thread from the Spinal forum..... I'll put it on your thread k.....
Yes, indeed this is something to think about.

I mean really. We all know that our spines and the nerves within are what connects our entire body. So, when something isn't 'right'....it's a matter of pinpointing what our pain signals are trying to say to us. Some of our nerves just simply go in to 'overdrive' ..... that 'fight or flight' thing.
Nerves are misfiring and we must find the reason.
I'm sick of just trying to cover over everything with meds.....I want to find the PROBLEM.
I'll be looking for a specialist very soon. I have some family matters I must attend to, but I'm dedicating the month of March to finding the 'right' specialist for whatever the heck it is that I need!! :eek:

wish me luck......:rolleyes:

wishes and Prayers there for you Rae
 

Gotcha Covered my friend. May your situation be fully discovered in these coming weeks.

Prayin,
Mark56:smileypray::smileypray::smileypray::smileyp ray::smileypray::smileypray::smileypray::smileypra y::smileypray::smileypray::smileypray::smileypray: :smileypray::smileypray:

THanks Rae got that!!!!:hug:


Will just take it one step at a time.............lets hope we all get to the bottom of all this eh??!?!?!?!


Jackie:grouphug:

Hi. My husband has just had his spinal cord stimulator removed. As he was packing the controller away I decided to Google the model number to see if anyone else had had problems with them, it brought me here.
Is this what you are looking for?
https://lh6.googleusercontent.com/-i...7434A.jpeg.jpg

I hope it is of some use. We are in the UK if you need any more info from the book.

Thanx bobbob!
 

How wonderful that you found this site as you were googling the similar model! Pharpar hasn't posted since February, so chances are she won't see your post. If she has an email address on her profile page, maybe I could refer her to your post.

Now that everything is electronic, it's hard to actually find a hardcopy manual these days! At best, we have to access the manual via CD-ROM or log on to the manufacturer website. But hey, we're saving trees, so it ain't all bad :p

I'm sorry your husband's unit didn't work out. How long did he use it?

Rae

Hi Rrae.

My husband had his implant fitted in 2003. There was a trial going on at a local hospital and even though he didn't fit the criteria they said they would fit it anyway. He had the trial fit then they fitted it permanently. He wasn't happy as he felt the surgeon cutting him and he had to go and make phone calls asking what to do next:confused: It worked for a few weeks but then it started to become unstable and caused him more pain. The clinic wouldn't believe there was a problem until they checked it and found a lead casing was cracked. They said they could change the lead. He was reluctant as having it fitted the first time left him in so much pain I had to take him to A&E for a pain killing jab.

He had the lead replaced in 2004. Again it worked for a few weeks and then failed again. It would change levels without the controller being anywhere near him. He went to see the nurse who tried to reset it. It worked for three weeks and then the site of the stimulation moved. He contacted the hospital on numerous occasions and they never got back to him. Finally in November 2005 after we wrote a letter outlining all that had happened, they finally saw him. The lead was damaged again! they wanted to replace it again but he flatly refused as he had had enough and wished it had never been fitted. They switched it off, supposedly.

Every now and again the implant would switch itself on. One day it took him about 10 minutes to walk 50 feet as he had to take a step between each pulse.

Then last year he was finally sent to a pain clinic at another hospital. They assessed him and decided on a plan of action. He cannot take oral pain medication as he has quite severe acid reflux. They tried him on pain patches, hardly worked and bad side effects. They want to try him on medication that is given to epileptics but they won’t until he is referred again for his reflux. He asked the surgeon at the clinic if he could have the implant removed, they agreed straight away and didn’t push him to have the leads replaced. He actually asked if they could remove his leg as it was that causing most if his problems.:eek: They said no.

So last Wednesday a very nice team removed the offending article.

Sorry for the long ramble but this is the first time I have come across people who have these implants. I am interested in knowing if others have had failures. Apparently the surgeon remove two that day so I can’t help thinking they are not all successful.

My GOODNESS bobbob!
What an ordeal you and your husband have been thru!
It sounds as tho the medical 'team' was not on the same page in the least.
Thank you for typing out the details of what he went thru. This is good stuff for others to read.
It seems most folks who get these units will need some sort of adjustment or tweak session(s). Very rarely will a person be up and running from the get-go. Our beloved Mark56 is the exception however. His story has amazed many people. Here is his thread in which he continues to document how the SCS has benefited him
http://neurotalk.psychcentral.com/thread117854.html
It's a great read.

One of the biggest culprits which requires repeat visits is lead migration.
Myself included, but I confess that it was my doing. I overdid it as I began to feel better and one of my leads came loose from the dura and slid down 6 inches! :eek: I don't know HOW long it had been since it happened but when I finally got a lumbar xray, that's when it was discovered. And, like you shared, it took some prodding to get anyone to give me the time of day. Lord. But (get this) >> I was doing just fine with the one good lead so we just decided to have the bad lead taken out rather than go back to the OR to fix it. I'm amazed that one lead is doing so well in covering my bilateral leg neuropathy-type pain.

Other issues can't be helped, such as scar tissue or lead breakage, as was your husband's case.

It is very disappointing to me that patients don't seem to get very good follow-up care. Some do, but alot of people are left feeling like the lone ranger once the high-dollar procedure has been done.

I would venture to say that communication is key, especially during the initial implant and getting coverage where it needs to be. Precision is paramount for a successful outcome. But it's kinda hard to be precise when you're in the twilight daze undergoing this radical procedure.

Oh my, NOW look at who's rambling :rolleyes:

I hope others will chime in and share their experiences. Actually, we should start a whole new thread on this topic so that it'll be easy to find for those looking to see possible forseeable problems.

Rae
:grouphug:

Still waiting...
 

Well, I finally got to see my consultant and Medtronic rep in April and have been waiting since then for the funding to be approved for replacement. This is now scheduled for 21st November, just hoping the battery lasts that long!

Thank you for posting the scan of the booklet - that was exactly the page I was trying to find!

I have one more question! They are upgrading the system to a rechargeable battery, but I also want them to move the battery. It's currently in my rib cage and being a lady (which some may question at times!), it's not the most comfortable place - I'll leave your imaginations to fill in the rest!

Does anyone have the battery inserted in the lower stomach area? I believe that is my other option, and wanted to check what the feedback was on this area.

Thanks as always for your help!

Pip

Well Hello Pip!
 

It's good to see you again! I was beginning to think we 'lost' you :o.

Wow, you've been waiting a long time!
I probably need reminded of where your stimulation is reaching.

It seems that most people have their battery placed in the hip/butt area. Doesn't seem to pose a problem with charging, as there is an 'extention' that can reach around there to make contact with the battery.
That way it wouldn't be in the front.

Thanks for the update! We'll be anxious to hear how it goes next month!

:hug: Rae :hug:

Yup!
 

Yup, YUP!!

Howdy Pip, glad you are soon to receive needed help....... indeed.
Mark56:D

Hi Rae and Mark
 

Rae, you hadn't lost me, I'd lost you! Changed jobs and couldn't find the link again!

Mark, thanks for the kind words.

My SCS is for RSD in my right hand and wrist so the paddle is right at the top of my back - sorry, don't know all the terminology! I guess that's why they put the battery pack in my rib cage, as it was nearer than my butt, so less wiring to do. This means that until they open up the battery pocket, they won't know if there's sufficient spare wire to be able to move the battery. If not, they'll have to go back into the paddle site to re-wire, which wouldn't be a great option.

I guess it'll be a case of waking up and finding out what's happened whilst I've been out of it!

Watch this space!!!

Pip

Hey Pip
 

All the more reason to pray for the best result!

All the best,
Mark56:hug:zzzzzzzzzzzzzzzz

Hi Pip, I just saw the doctor today for what sounds like what you are experincing(SP. Brain turned off). He had a series of x-rays shot and told me that he believes that the shoulder/neck problem is due to weakness caused by the RSD. I also "guard" my arm and that puts additional stresses on that area. He does think that it is RSD related. The plan of action right now is to undergo an injection into several of the cervical nerves for diagnostic purposes. If they provide any relief I will have another series of injections that may possibly help for a year or longer.

If this does not work, I am seriously considering getting a LEGO arm that I can just take off and hang in the closet when the shoulder is acting up.

Good luck and prayers, Lisa

Goodness Lisa!!
 

Prayin the injections will work. Is it also possible that along with the injections some physical therapy might help in avoiding teh guarding which has exacerbated your weakness? Just a thought. It can be pretty gentle stuff, and even done in a warm therapy pool, so aggravation of the muscles is lessened while exercising.

Hoping and Prayin,
Mark56:grouphug:

Another Mark with a SCS
 

Interesting to read about your issues with your SCSs. I had mine implanted in Feb 1999 for Thoracic Outlet Syndrome. As you can tell I need a battery replacement but have been putting it off. Have to do it soon though. My leads are implanted at the base of my neck and the "Brains and Battery" are just above my belt in my back on the RT side. They had to snake an extension cord to reach the leads. It covers my entire left arm up to shoulder. Now I was always skinny, around 125-130lb but had gained weight before the implant, 180lb. I had to go back to bury the plug for the extension plug 2 mo later because it was bothering me. I lost 60lb in 60 days! They did a little procedure to bury it and adjusted the signal some. The Doc said that maybe the nerve that controls hunger was being effected. No kidding. A lot of you folks with shoulder blade, shoulder pain should look at the TOS forum as RSD and TOS are kissing cousins and most TOSers have both. BTW the yellow light on the 7434A controller if on longer when you shut it off, it is time to get a new battery or at least talk to a Doc. Good luck. Remember the first 100 years are the hardest.
Later Mark J

Thank you for that Mark J!
 

Very much appreciated! I had no idea TOS and RSD were so closely related!
That's amazing that you've had your implant for over 10 years and are just now getting a new battery!
What manufacturer is it?

I'm gonna have to take a peak over on the TOS forum.
Thank you so much for sharing!
I hope you stick around, looks like you could give us some good pointers!

It's great to have you!

Rae
:grouphug:

Hello MarkJ!!
 

Thank you so much for sharing! I appreciate deeply your wisdom regarding the the first 100 years being the hardest. Frankly, a friend of mine who hails from a Kansas farm and is a retired math genius at 92 years young would definitely agree with you!

Humbly,
Mark56:grouphug:

Hi Lisa,

Good to hear of someone else who has an SCS for an arm - it seems we are few and far between! I also tend to "guard" my arm and I'm sure this does put extra pressure on shoulder and neck, but not so much that it would cause this ache.

Lego arm? If you find one, let me know! LOL. I'd be very interested!! Although I have requested amputation in the past and they proved to me through mirroring acupuncture that removing it wouldn't necessarily remove the pain. Darn that for an idea then!

Good luck with the injections, I hope they help.

Pip :)