Boiling Mad......ggrrrrrr

[codyryonwoodward]

Okay to make a long story short. Got interstim implant in 2001. Have had numerous reprogramming..can't tell you how many. Since not to long after surgery toes on left foot big and toe next to it started to curl. Last 2 to 21/2 years unit has not worked like it did in beginning. For the last 1 year sometimes when I have a bowel movement I get shocked so much so I have to turn unit off just to get up...If I dont it shocks me worse. I have gone back to my pre-interstim urgency, freq. and pain. But pain is worse now. I have told the nurse who reprograms me the above problems and as for the Dr. he knows.

Now for the fun part. I lost my medical ins several months ago. I have applied for SSD but I am now waiting my appeal. When I ask my Uro to write me a letter for SSD he never would. In his notes he states I have been doing fine since the interstim. I have never made those comments to him. In fact I have my mom as a witness because she usually goes with me.

So now it cost me $50 a pop just to have unit reprogramed that does not last. When I have told nurse about probelms with my toes and bowel movement they told me that was normal. Last nurse I saw last week said she has never seen anyones toes that did that when I asked her to try and program it not to do that. So I called medtronic and they did research and called me back and told me that is NOT normal and that it is a side effect or complications from the unit and to contact my uroloigist. Thing is I have told him but nothing is being done about it I think its because I do not have insurance. There is no one else in North Louisiana that does this. I feel like since I was one the first ones he did all he wanted to do was put it in and let me go so he could get practice at doing it.

Last time I went in last week he would not even give me anymore pain medicine said there was a new law about not prescribeing pain medicine after having a adjustment and that you have to wait 6 weeks.

I DO NOT KNOW WHAT TO DO. Does the unit have a warranty and if so is almost 3 yrs later to late . I hope someone can help me, no one else seems to want to:toosh:

[dyno]

I can't offer any help but I am sorry you are going through this. I would encourage you to report this to the FDA. I have seen Jill mention this before. I am sure she can help you with the people to contact about this. It is important data they need to know about.

I went back and found when Jill mentioned this.
This is what she said:

:You can find more info on that at: http://www.fda.gov. These reports are VERY IMPORTANT to do because it gives other patients the chance to learn from your experience.

I hope you can get some help and I will be praying for you.:grouphug: :kissing:

[Sandy N.]

I am so sorry you are going through this.First of all is there any way you can get medicaid for health insurance coverage,especially if you have a medical issue. Second it is not normal to have your toes curl and I have heard of that happening. When mine started to do that With a temp lead I was told turn it off. I hope things get better soon. Talk to someone else at Medtronics until you get an answer you are comfortable with.

[icnmgrjill]

Cody....

I think you need to contact Medtronic again and again until they step in and assist you. We would hope that they would have some type of mechanism where patients who have concerns can receive help.

Also, please file a report immediately with the FDA to let them know of the side effects that you are having, especially the intense shocking when you are having a bowel movement. They need to know this. You would file it as part of their medwatch system..... http://www.fda.gov

Lastly, I'd sure like to see a copy of that law he cited. Could you call and ask for a copy of it, or of where we can find it. As far as I know, there has been no laws created specifically for pain medication and how it's used with neuromodulation. Good question to ask the company too.

If you'd like to talk, call me at work next week. I'd like to help if I can .... and I could bring this to the attention of one of my contacts at Medtronic.

Jill

[Teri]

Cody~I am so sorry that this is happening to you.....maybe people who are willing to try the implant need to sign agreements that if it needs to come out, they will take it out.

It happened with the dr who put mine it. He just wouldn't return my calls. He knew the implant was not working. The rep had worked with me for 1 1/2 hours. The dr came in and looked at the exray's they took and I was waiting for 6 months to get a surgery date for a revision and it never came. I had to find another dr and I think I was one of the lucky ones cuz most dr's are afraid to clean up after other dr's.

As for you uro's report to SS, I think you might need to write him a letter and tell him what your life was like before IC and what it's like now. I did that with all of my dr's because it just isn't some thing that you can cover in a 15 minute office visit. You really need to stress to your uro what your days and nights are like and if you need to grab him by the arm and tell him to sit down and talk to me, than so be it. That's what I had to do with one of mine......I was scared to death but I was tired of being just a name, I wanted to be a PERSON.

I will be sending extra prayers your way:pray:

[carly]

Sometimes I think I am the lucky one because my implant didn't work from the beginning, so I never had it implanted permanetly. I agree you need to push medtronic. No-one will even consider a implant if they do not help when there are problems. I am on SS disability, but I have a concern about some doctors thinking the implant will eliminate disability. Good luck, I will keep you in my prayers.

[codyryonwoodward]

Thank you to everyone. And to Jill a big hug sent your way. You went way above and beyond the call of duty. I did call the number you sent me and spoke to Tinie. She took all the infomation and would try and get me some help. I know they want to stand by the product they use and make I just wish the Urologist would do the same for the procdure he did. But that is the rat race of being a doctor I assume.

Having to deal with IC is bad enough, but having to deal with this, not having insurance and trying to deal with SS for my appeals case is just totally unbeliveable. Not to mention all the others things. I just wish some of these people could just walk in our shoes for one day and having to deal with urgency freq and the pain. I would not wish the disease on my worst enemy.

I thought in the beggining this dr was the best. but he is the same dr that will not write a letter on my behalf to SS nor will he give me anymore pain medicine because I have the interstim. I called on Monday to try and get a referral to the pain Dr, but of course no one will return my call. Thank god for my OB/GYN he will write scrips when I need them and he did write me a letter on my behalf.

Anywho THANKS EVERYONE for the help. This is the best web site:grouphug:

[Mimi-in-Chicagoland]

Have you turned your implant off? That would be what I would do. I think the #1 issue Medtronic faces is poorly trained doctors. I'm sorry you found one, Cody. I hope you can find someone to fix this. I will say again...you should not feel any pain when your implant is working right. Maybe a bit of discomfort at the implant site once in a while (you do have metal in your rear) or if you turn your implant up really high you'll feel it, but it won't be painful.

I'm also sorry he won't write you a letter...obviously your quality of life is not the same. You need to keep a voiding/pain diary for a few weeks to show him. (I can think of a few people that need to experience IC)

[codyryonwoodward]

Mimi thanks for the reply. Yeah I have turned it off. I feel like I was one of his ginue pigs in the beg. He had done maybe 3 or 4 when he got to me. Oh well...His attiude towards me has most def. changed since I have been complaining of problems with him and I am sure no ins affects his opi. to. Sorry for the spelling its been a long day already.

They still have not called me back about the problems and what medtronic said to me the first time. I guess since he wont give me the referrel I need to the pain dr and since he will not give me anymore pain meds I will have to contact my OB/GYN. Thank god for that man he is the best. He was also the first one to think I had IC when no one else would listen.

Thanks Patricia