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Medtronic Neurostimulator for bladder problems

JaneR
  • By JaneR
  • Posted August 14, 2009 at 11:32 am · 17 replies
  • In Treatment
  • Shared with the public
0 Recommendations

Hi everyone,

I am new to this site so don't really understand how to use it yet.

I have a Medtronic implanted device since 2001 and have been having serious problems for about three years.

When things go wrong no one will talk and groups that do talk about it cut you off because you want action by the governing bodies that permit these devices to be implanted and used on patients.

But when things go wrong there is no one to listen and no one cares.

You are just left to walk around in agony and confusion and the device is still inside you and no one is monitering it or you.

Has anyone complained to the FDA or others and what response have you got.

Jane R

Explore topics in this discussion:

Surgery Pain Confusion Morphine

17 replies

lkay

there are all sorts of problems and recalls with medtronic implants - pacemakers, morphine pumps and the interstim..... here's the link to the official recall.

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRes/res.cfm?ID=53499

you mighwant to google the interstem name and see what else you turn up.......... good luck - Laura

JaneR

Hi Laura,

Thanks for the info and the link.

I really appreciate all of this help.

Jane R

karenmc

Hi Jane,
I'm in the same boat as you! I almost can't believe how things turned out after 2 interstim implants. I have been having so many problems and my health has gotten so much worse than before the implants. I can't wear shoes most of the time because of nerve problems and a slew of other symptoms. My last visit with the doctor who implanted the devises ended with her chucking me from the office. An administrator came into the exam room and wanted to know why I no longer had Keystone Healthplan because the removals would only require a referral. But because I had only medicare now, it only pays 80%. The doctor refused to see me and now I'm left high and dry. Every other doctor I contacted won't help because there is a problem and they all say the same thing...go back to who put them in.
Any advice? I'm so drained from this whole ordeal!

JaneR

Hi Karen,

This is a very common way for Medtronic to treat people when the device goes wrong and it usually happens after the followup surgeries to try to put things right.

When they took out the old battery and put in a new one my problems excalated and, of course, the doctor nor Medtronic had ever heard about this happening!!

I have been getting bogged down in my e-mail with horror stories from all kinds of people who have had this happen and have been thrown out of the doctor's offices or tossed off their insurance benefits as they know Medtronic will pay them well to keep it all hidden.

I am in the middle of exposing what has happened to me and I will keep you updated.

I know that I am going to be left walking around with the parts of my old implant left behind and no one taking care of the new one that was put in last year.

It is time to get this out in the open and have Medtronic face up to the fact that it cannot just keep "burying their mistakes".

They are rich and powerful but a "bunch of very angry, ticked off patients" left walking around in these messes cannot be ignored.

On one other site I was virtually "driven off" because I bought up this subject and every one I tried to contact that had posted about these problems "disappeared" and the link was "closed"!!

No one likes to be on the wrong side of Medtronic.

I am waiting to hear back from a Senator who has taken an interests in medically implanted devices but he had never been made aware of the "horror stories" out there.

Talk to you soon.

Jane R

Maggie2300

Hi Jane

Have you tried the support group called I_shine, this is a yahoo group, as I am sure they would help you and support you as they all also have the same problems as you.

Thinking of you.

Maggie

JaneR

Thanks Maggie

I have been chatting with them and it is really helping.

Someone called Karen also has the same problem that I have.

I had to make the decision and call some difficult shots (that is why I am up at 4am in the morning) and it will leave me without a doctor and no one to care.

So I have to do things that will help others and pay a very heavy price for doing it.

Where we will all go from there with our injured bodies is anyone's guess.

I cannot lay down and sleep as the pain is so bad and as I am not on benefits at work anymore I am not covered for the drugs that work and I am trying to appeal to the Government system to cover them for me.

I am just terrified of being left with the old device in there and the new active one in there an no one to help.

Thanks so much Maggie

You are a true friend

Jane R

karenmc

Hello Maggie and Jane,
Thanks for your responses! I feel like I'm in the twighlight zone with these surreal experiences! Most people would not want to know this sort of thing happens. It's more comfortable to walk around with a false sense of security.
As far as the other site I noticed that it has the same layout and fonts and design work as the medtronic site....hmmm!!!
Jane I would love to help with this issue in any way that I can, and not just for myself. I don't even know where to begin! I need to get these out and have hit nothing but a brick wall!
Anyone out there know a doctor who may be helpful?

JaneR

Hi Karen, Maggie and everyone that has responded to me about this device.

I can see that I am definately not alone and that if we join together we can move mountains and it does not matter which country we live it, we have a voice and we have numbers and facts that cannot be ignored.

I will reply to you all tomorrow as I spent all day filling out Government forms and then going to the Post Office to send registered mail so I at least have the proof that I got my answers in on time.

Love, hugs and prayers to everyone.

Jane R

karenmc

Hello again Jane,
Thanks back to you too! Who did you send letters to?
I found out that there is a bill called the medical safety device act 2009 (S. 540). It is out there because of the Supreme Court Decision in the case Riegel v Medtronic Inc. case # 04-0412 which protects any medical device passed by the FDA from being held accountable for any problems or injuries. It inadvertently also caused a chain reaction to protect the medical professionals and not the patients. I sent letters to many officials but these things take so much time!
What do those of us do that need medical help now and now where to go? This is a rhetorical question of course, I'm just venting!

Maggie2300

Hi all,

I think this bill is just crazy and don't know how it could have been passed, I live in Australia and I am becoming very glad as our medical system is so much easier. But having said this you have a new President who seems hell bent on changing your health system so maybe now is the time for letters from you all, to who ever you can think of and maybe you could get some changes made, don't give up and all stick together

Good luck

Maggie

karenmc

Thanks for the positive message Maggie!
Good Luck back at you too!

JaneR

Hi Karen and Maggie

What has happened in the States I do not believe has happened in Canada yet so I am hoping that the Senator here that I have written to will "sit down, shut up, and listen"!!!!!

There are a lot of patients in the States who received this device before it was appproved by the FDA so they should join together and try to do something together.

I am hoping here in Canada that as Medtronic did not put any warnings in the book that I was given when the device was implanted that I will have a "little" bit of protection.

This should serve as a warning to anyone who reads these posts and are thinking of getting these devices to check out who will take care of them when they go wrong, if it can be removed when it goes wrong (last year they put in a new device and had to leave the old wires behind), we were "verbally" told this but when I got a copy of the surgery report there is absolutely nothing in that telling me or anyone that the old wires are left behind and why!!

They refuse to correct the report and say it will "only be done for legal purposes" when they know I cannot afford a lawyer!

Therefore I am sending this report to the Senator in Ottawa and a copy to the media to put him on the spot.

We don't have a lot of "freedom of speech" in Canada either!

Now I cannot lay down at night as the new device is so close to the skin it won't be long before it breaks thru.

The advice from the implanting surgeon 3 weeks ago was: do not lose any more weight as it is the "fat that is holding it in", don't lie on that side, and "tie a chusion around it when you sleep"!!!!

As if sleep is not hard enough to come by, sleeping with a chusion tied to your "bum" is really going to enhance the process!

The Colleges of Physicians and Surgeons here just cover up the mistakes, bury the mistakes and do nothing for the patients. They only protect the doctor's.

The Governments do not care either. Once they get voted in all their promises of help as soon forgotten.

It needs to happen to someone important and with "clout" or someone in their families and then something would be done.

I will try later to give you the name of the Senator here in Ottawa and then we will see what his office has to say.

Good luck and try to rest and I will chat with you all later.

Jane R

karenmc

Jane,
I totally feel for you! I go to a sleep center now, something since inerstim! I also had the same thought about if it happened to someone with clout we would not be in this situation. How is it that the ones with money have no repercussions or responsibility but us smaller folks have to be insured to the hilt by law and are more accountable for our actions?! It's so screwy!
I know people are in pain and desperate, but it's so wrong for some to use that as a means to fill up their pockets!
Good Luck Jane and all in our boat! If anyone knows how to make change happen, please let me know how to help!

Maggie2300

Hi Jane and Karen

I think you have hit on a very good idea, with going to the press, if you can get this on a TV and in the media I will bet they start ringing you and doing something to shut you up. That would be why we don't hear of famous people with any problems, as meditronics fix there problems before they become an issue.

Glad my urologist told me to stay away from the intersim, he even said I would have a problem finding anyone to insert it here, so Australia must know about the problems.

Love
Maggie

arabella

I have had the implant for a little over a year. The pain is horrible in my lower back, legs and implant site. My walking has been severly affected and i now am seeing a nuerologist. I used to be a highly active individual and now I am unable to work or leave the house rarely. At night the pain wakens me and my moaning keeps my husband up. I have noone to relate to and no Doctor to help. The pain is said to be caused by something else. (unknown) My heart goes out to all who are in a simialar situation. For those who are considering the implant, know this.......You may not be getting correct information about the possible side effects. Also consider the fact that you may need a MRI in the future and will have to find another medical alternative for testing. Please research this procedure and visiting this web sight is a blessing to have. I am so greatful to finally have a computer and have found this web site.
Take care... I know bladder problems can be disabling. Arabella

JaneR

Hi Arabella.

Did you send your report to the FDA yet.

I will be back on line soon. I am just trying to deal with the death of my grandson which keeps coming in waves.

Some days I feel really good and others I just cannot face things.

Let me know if you sent in a report.

Thanks so much.

Jane R

arabella

Dear Jane R,
SO sorry for your loss. I will keep you in prayer. I have not sent a report to the FDA as of yet. Everytime I open my mouth in this rural, isolated area I have trouble. I am going through a medical crisis and need to keep my hard to come by doctors. I will never give up and my voice will be heard. It is too bad that some of us have to bite the dust before a negative situation is exposed and delt with humanely.
It is the repetition of the "Dark Ages" which draws
attention to mankind. A much more faverable outcome is bound to occur for people with bladder issues. Bless you for all that your going through and doing. Arabella....

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