THanks Rae got that!!!!


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


Jackie

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?


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

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

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 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. 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! 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

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

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

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

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!

Rae

Yup, YUP!!

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

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

All the more reason to pray for the best result!

All the best,
Mark56zzzzzzzzzzzzzzzz