Private Support Chat For People With Stim Problems - Page 2 - Interstitial Cystitis (ICN) Support Forum

Jayne Marie · 02-06-2007, 06:20 AM

Thank you ICSonja!

Did you have much trouble finding a Neurologist that was familiar with the Interstim implant procedure? Medtronics has asked me to do a test to see if I am allergic to the device. I don't know if allergies could cause this kind of pain and blood pressure issues, but I guess it is at least worth knowing one more bit of data.

Thank you again.

Jayne

Shirley2 · 02-10-2007, 04:15 AM

This would be a good thing! I also had a interstim done i did the trial and then went for the prement one, but it did not work out for me

When i woke up i was put in the hospital, i was to go home that same day, but the doctor who did mine it my spinal fluid (spell check) and when i got up to go to the bathroom i couldn't hardly feel my legs. And i was on bedrest for about a month after that. And i don't know if now to this day is why i am having problems with my legs. Restless legs, real bad leg cramps in my left leg, it is just awful and lower back pain. Just want to know if this has happen to anyone else. They wanted me to have it done again after they took a little off my tail bone, and i said no way.

hope everyone has a pain free day

Katherine · 03-03-2007, 03:12 AM

I have had both removed am have permant damage from the stimulater being in wrong. Found out from the doctor who took it out that it was in upside down.
I was constantly getting shocked. I am angery about the permant damage but do not know what to do about it.

Katherine

icsonja · 03-07-2007, 07:19 AM

I am so sorry you all have had trouble with your stims, I can sympathize. I have been there and am still doing that!
As for the what can I do question, probably not much, most DR really cover their hind-end, especially for a device that is being used "off label", they will inform you about "informed consent" which was in some of the papers you signed prior to surgery, so unless you have a seriuos life threatening, long term disablbling oucome that you can PROVE was due to Dr error, and find a DR willing to say that, you can't do much, but warn others and help those who have the ame issues.
I did win a malpractice case, it took close to five years and it was obvious Dr error, but it was a very painful,emoitionally draining experience. I am glad I stuck it out and got some justice, but it was terrible on my entire family.
But if you feel you really may have a case consult an attorney who specializes in MedicalMalpractice and ask for a consult, it is usually free.
As for the damage of your bodies, that can be even harder, but my personal reccomendation is to find a good neurologist and have them check you out, they can usually advice what if anything can be done and even help with pain control.
I hope this helps some. Hang in there and its OK to cry.

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chloeriley · 04-28-2007, 05:47 PM

i am sooo glad this is here!! i hope ya'll still come to this part of the forum!!

A. Marie · 08-01-2007, 02:58 AM

Hi - I am new to this whole forum thing, so bear with me. I am in the middle of a horrible flare and decided it was about time I get in touch with others who are suffering with the same disease. I have been feeling so alienated. I had interstim implanted in December 2006 and then the permanent device in January. I have had some difficulties finding a setting that works for me. How often do you all change your settings? My doctor advised me to change every time I have a flare. Although I think the interstim has done great thins for my urinary and frequency symptoms, it certainly is not a cure. My most significant problem with the interstim is that I get shocked every time I walk into a department store. Any store that has the magnetic devised used to catch shoplifters shocks me. I have to turn my devise down to 0 every time I go shopping. It is really annoying. My doctor says this shouldn't be happening because I have the new child's size devise and this devise no longer has a magnetic strip. Any one else having a problem with this? Thanks.

icsonja · 08-01-2007, 04:39 AM

So sorry to hear of your problems, it is not an unusual story unfortunatley, I had shocks going in and out of stores even with my stim turned off, in one case at Home depot it knocked me off my feet it shocked me so badly,. I havent heard of a stim with no manetic strip in it, but then again there is alot dr's will tell you to sell a $40,000 device, as will the reps who promote them.....I have heard it all, and for some reason it is always "the first time they have ever seen this problem"
But I am glad you are getting some relief from your stim, that is good!
Be careful, the shocks can reset or even damage your unit, so ask to use a different door, show your medtronics stim card and turn it off when going in and if you see a big difference in how it is acting it may need to be checked.
I wish you the best and feel free to contact anytime.
my email is baezas@sbcglobal.net
Sonja

Katherine · 08-05-2007, 01:26 AM

I found out doctor put the thing in upside down.
I stayed in pain for months from it.
Glad they are gone
katherine

ads · 08-05-2007, 01:37 AM

Why can't you sue the doctor who put it in upside down? You have a right to all of you medical records. This is a case where the doctor needs to be accountable! I am so sorry this happened to you.

There was an active civil lawsuit of some sort against ANS several years ago, not sure of the out come though.

ads

Quote:

Originally Posted by Katherine

I have had both removed am have permant damage from the stimulater being in wrong. Found out from the doctor who took it out that it was in upside down.
I was constantly getting shocked. I am angery about the permant damage but do not know what to do about it.

Katherine

icsonja · 08-06-2007, 06:59 AM

Hello to all, to Katherine, I am so sorry about your situation, and Ads, I do know how you feel, I am sorry you are both having to deal with bad stim outcomes.
As I said before, you can of course attempt a lawsuit but I know from my owm MedMal case that is very uncommon for a plantiff (you) to win against a Doctor, my case was not about interstim, but was a very seriuos case of malpractice, Doctors on cocaine, one with an invalid license, and 15 surgeries to try to put me back together again, I had a VERY good case and it still was an uphill battle for 5 years,it is almost impossible to get a Doctor who will testify that another Doctor did something wrong, it is the "wall of silence" as my attorneys told me, most all Doctors feel that to tesify aginst another Doctor leaves them open to be sued and not get support from the medical community. We hired
experts" to work on only med-mal cases and they are very expensive.
As I said I did win, but by the time my team of attorneys got 40% and we paid all the "experts" and investigators and the myriad of other thing, , we then had to pay all my outstanding medical bills, (which most people dont realize, even if the judgement is for you and the Doctors are found guilty of malpractice, YOU not them are responsible for paying for your medical bills that resulted from the injury, in fact I had to pay in full for the surgery that almost killed me) so after paying $480,000.00 approx in medical bills and all the other stuff I mentioned, I was left with $22,000.00 I had gotten a 7 figure settlement too, so it is alot of awful , stress for very little outcome.
I was most happy with the fact that I did get both DR's license revoked, for 5 years one died in a plane crash before that and the other appled and got a limited license, he just cant do surgery untill 2009, but he is still practicing.
So as someone who fought, my advice is this, get your medical records (all of them) and take them to a med-mal attorney for a consult, they should be able to tell if you have a snowballs chance in you-know-where.
I wish you luck, in whatever you decide, and if you need some honest support, I'm here.
Interstim is a huge money making device, with kickbacks to Doctors who put them in from Medtronics the company who makes them. There was a series of article about that in the New York Times , I think it was last year, you can google it or I think it is also somewhere posted on this website.
Please go to the FDA MAUDE database and fill out the forms about your interstim problems, you will find you are not alone. There are alot of other interstim stories to read there. Have as much info about your stim as you can, such as model# and serial # (it is on the box and the remote) but even if you dont have the # fill it out anyway. Every persons story counts!!!!
I wish you the best and hope you will have a easy day, I know better than to say "pain free!) but as good as you can be

Thank you for talking openly about this issue, it is not always popular to talk about the negative of interstim, but it is so very important, THANK YOU!!!!

A. Marie · 08-06-2007, 09:12 AM

Sonja, I'm interested in reading the New York Times articles on interstim and am unable to locate them. I have used Google and registered on the New York Times website. Will you let me know if you have another way to locate the articles? Thank you.

icsonja · 08-07-2007, 08:18 AM

Hi, here is a couple of ways to find this article, first you can go to the ICN home page and click "search" it will be a google search and type in Medtronics+kickbacks and it will send you to the New York Times site, you can register for free and the article will come up. Or you can google Medtronics+kickbacks and it shouls come up....hope this helps

angelaharrell · 02-04-2008, 12:31 PM

An auto accident back in August destroyed the battery of my interstim. After an extremely painful shock in my left leg (implant in left hip) my toes on both feet were left with a strange tingling sensation.

A surgery to replace the implant, not the lead wires, was performed immediately following the accident.

Since August, 5 months now, I still have numb toes. My Doctor at the Mayo has tried different settings for my stimulator. Stumped as I am, his best guest was that the problem could be from inflammation as a result of the accident. I've been on anti inflammatories for several months and still have the sensation of "Sleepy toes".

The problems I had with the stimulator before the accident were more than a little irritating. I had thoughts of having it removed altogether but had never followed through. Now with the onset of new problems it's all I can think about.

My question is has anyone else had these kind of problems with the device following an accident or otherwise?

***dyno*** · 02-04-2008, 01:10 PM

Post #28, right above this one by angelaharrel has been reposted here:

http://www.ic-network.com/forum/showthread.php?t=46210

capricorngirl · 02-29-2008, 08:21 PM

I have had my interstim since 2002. Had to have the device and leads redone in 2007 as they had moved and were shocking me and the you could see them both bulging thru my skin. I have not had any help with pain relief with the interstim but like you, ever since having the interstim I have severe lower back pain (where the leads are) that radiates down my legs, hips, thighs, and feet. I went to the dr and was told it was nuropathy pain. I was put on Nuerontin and slowly increased my dosage over about 6 months. This seemed to help for a while but I am not at the max dose and the pain is coming back. Makes me wonder if the leads cause any form of nerve damage? Sometimes the leg pain is so intense, my legs swell and I can not sleep. I am allergic to anit infalmitories so I basically have to suffer. I had a hysterectomy and bladder tuck on 2/21/08 and was in such intense pain after the surgery it was awful. While in the hospital my legs/feet swelled so bad that the dr could not even see my ankels. This is common for me and I have to wonder if it is at all connected with the interstim as I did not have any of these problems until I had the interstim placed. I am at this point considering having it removed. It was very effective in the beginning for controling frequency, but not so much anymore. I am up about every 30 min during the night using the bathroom and it is much worse if I have done activities during the day. I hope that things work out for you and as you said, the best thing you can do for yourself is keep a positive attitude and surround yourself with wonderful people that understand and support you.