Private Support Chat For People With Stim Problems

[iris2]

I thought I needed permission to post here? I sent a private email to a moderator the other day but I'll post much of it here.

I had the Interstim implant final operation in July. For the first several weeks it changed my entire life it was great. After the initial 3 or 4 weeks I started having sudden onset pain and had to increase my narcotic pain medication. For 3 weeks I had a terrible stomach ache until I realized I had constipation but it had not been so bad as to be obvious. Since 2003 I had been able to mitigate the constipation, regardless of how much narcotics, with fiber and magnesium and very occasionally "senokot". I started turning the device off for two hours several times a day. This seemed to mitigate both the increased pain and the constipation. I also increased my instant release pain medication and decreased the long term medication. It was working but the constipation seemed to be having an additive effect in that it continued to get worse every week. It was becoming quite a balancing act. My uro insisted on prescribing a narcotic to take every 24 hours, (but morphine instead of Oxycontin) and both he and the medtronics guy told me to leave the Interstim on all the time, the medtronics guy suggested turning it down even further than I had. So for 2 days I did as told starting on Oct. 5th and that was the last time I have had a bowel movement on my own. I turned the Interstim device off and left it off on Monday Oct. 19 a week ago ( my frequency had increased as constipation causes flaring and the device cannot overcome it), stopped taking any long term narcotics, decreased my narcotic use overall, first took senokot daily , then suppositories, then enemas. Nothing much enough to eat and start the process over the next day.

The uro refuses to address any of it and insists it is all narcotics even though I am almost off all of them. The Medtronics guy stopped interacting with me.
I spoke with Medtronics who suggest conservatively changing the settings which is impossible until I find a new doctor because the one I have now refuses to believe it is the Interstim. I asked him t change the settings and he refused to believe I was having problems. Said it was from the narcotics and then insisted on increasing my long term narcotics which at that time completely stopped my bowels from functioning. I have an appointment with a GI guy but what is he going to know about this?

I guess when I asked my doctor specifically how many he had done and how many had had problems he was avoiding the truth. Apparently he believes mine is a great success. But then why won't the medtronics guy get in touch with me?

At what point should I get a lawyer? Or should I just jump in front of a fast moving freight train? Not trying to be funny at all.

iris

[maryla]

Iris,

I hear you! I had a horrible time with my stim too. It worked great for a little while than it stopped working and started to erode through the skin. It also started colon spasms for me that are horrible to say the least.. It was the large one with 2 leads. I had it removed after 10 months. It is just so frustrating that we are not taken seriously by some drs. I hate that! I hope you find someone to help. Before I had mine put in, I ask the uro if there ever came a time that I wanted it out would he do it? So he did

hugs and blessings

[tigger_gal]

IMO you should contact a lawyer, if for nothing else a free consolt and see if you may have a case.
Call Medtronic at (800) 328-2518 (toll free within the U.S) or (763) 514-4000 (worldwide). Ask to talk to someone in the patient hot line.
I think getting reprogrammed may be a plus but not knowing what is going on is frustrating.
If you can get an x-ray to see if your leads have moved.
rule of thumb you do not need to feel your stim for it to work and meds will cause constipation so will a long term stimulation.
I often turn mine off sometimes for a few weeks at a time, just to prevent any damage.
I would talk to you grneral practioner see if there is anything he can do, also the GI may have some idea of what to suggest.
If you have any questions feel free to pm me. one last question, do you have the old one or the new one where you can change your settings.
Good luck

[iris2]

I was turning it off every day for 2 hours about 2 or 3 times and it was working fine. I was already starting to have bowel problems and the doc kept saying it was the narcotics. I started taking morphine ir which helped a lot. All this gave my intestines SOME chance to work. Then i saw him and he said no I have to take 'Avinza" a 24 hour long narcotic and the medtronic guy ( who will not talk to me anymore) insisted I never turn it off. That was the last day I had a natural bowel movement. Weird thing is even after I turned the thing off I still feel a small amount of pain in the "bycycle seat" area. I was thinking it was what someone said and the lead had moved. My doc will not address any of it. I get the feeling it would be like him admitting a failure. I asked him how many he had done and how many had had problems and he said like 2. Yea right.It worked so well for a few weeks I wish I could find out what is wrong and maybe he could move the leads ( or a new doc) . My family thinks I am full of it. I said I should get a lawyer and they pupued it. I am really alone here.I called medtronics and although nice full of it. I called the other medtronics guy who had worked with me who said right away that after a short period they were not supposed to work with me. The other guy had been talking to me a lot and all of the sudden would not answer any email or call. I badgered this one and told him all I wanted was a few names of doctors that did Interstim. He was really mad but finally capitulated.I see a GI guy on Tuesday but what the H*** can he do??

I can't even type how I feel. I am not eating anything anymore because It just makes me so sick when I eat. I'm starting to feel sick from Popsicles and jello. God knows what the colorings and additives are doing to my bladder. Which now has a mind of its own. Flares for no reason or I have no problem at all. I am so upset I could go on and on. I am so low on energy I instead of taking a shower and dressing I am waiting for a freight train to come through my house and end it all!!!


I stopped taking the narcotics several days ago. No difference.

But really thanks. Not that I want others to be suffering but you gave me some answers and I don't feel so alone.

Irene

[aliciacaldwell]

hello my name is alicia and i am quite interested in this post i had my trial and my 2nd placement done in october of 09, my main problem always was pain and not frequency it was the complete opposit i could not pee ever!!! my uro demanded i get the stim said it was the only thing she would give me for help never explained a thing to me and the trial was te worst thing i ever went through i swear, i went in for the trial and they decided to tell me i couldnt be in twilight they said they needed me awake and just numb all the research i had done never said anything like that, my fiance said he could hear me screaming from down the hall!! it was so bad that i remember the nurses and my uro pushing my shoulders back down to the table b/c i was movig after they had made th incisions they then decided it was too much on me and put me out!! a 2 hour thing at the hospital quickly camee to an 8 and a half my fiane was so frantic when i woke up and so happy to finally see me, i woke up in extreme pain and vomiting severly they say from the stress for those 2 weeks i was stll not able to move called my uro everyday bawling she said iwas fine it was normal i then emailed her one night i just couldnt move my legs and i had small amounts of puss on my incision on the right side she said you will be fine i will evaluate at your next visit,i couldnt take it so my fiance took me to the closest er the next morning, i had an infection and a hematoma on my spine they then put me in a peramedic and sent me down to the hospital where my uro was and said they would have to fix it since they did the surgery, well my uro came and saw me then said to go home and sh'd see me in 2 days for the final stage that the er i went to lied and there was no infection that she could see, i went and got my final on oct 28 of 09 and i was sent home with nothing for pain at all she said id be fine well i call almost everyday crying of the pain i still have,my toes curl on me constantly, my left side and down my leg is excrusiating, i must have lost weight as well because now the boxs and the wires are both very visible on my left the wire is sticking up so far that i can put my finger underneath it and the skin it is under i have begged my uro to see me and help and she has told me and my pain therapist that i am a drug seeker and she did the implant right and advised me she would no longer give me perscriptions nor will she have a visit with me untill july, even when a bm is about to come about since i also have ibs i get shocked in th rectom area i dont know what else to do but i do advise anyone who is even considering this surgery think very very hard first i regret that decision everyday i took for granted the small amounts of pain i had for the years before the stim for now i can no longer move i now sleep o a futon in my living room cause i cant walk up my stairs i am only 23 and i cant move and be normal please consider all aspects before you get this done to you