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  • Teri
    replied
    It's funny how dr's don't think alike. When we went on vacation last winter my dr wrote me a note, just incase I needed it and said I could go thru the security check at the airport with no problem. When I went the year before that uro said "NO",t hey have to do the hand search. Well, after some pretty humiliating stuff on that first vacation, I decided to try it the new dr's way and I didn't have a bit of trouble. No bells and whistles and no alarms going off

    Kimberly, I lost weight after I had mine put in and it finally found it's own comfy spot. Now that I don't have it anymore I still have the indintation on my cheek from how the dang thing was laying in there......I am soooooooooooo glad that I don't have any reason to show this scared up 53 year old body cuz it's really a turn-off

    Wishing you the VERY best~

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  • rjyoon
    replied
    Medic Alert

    I believe it's very important to wear a medical ID with an implant. I have one by Medic Alert (1-800-432-5378). My wording is "Bladder simulator. No MRI. No diathermy." When medical personnel call the phone number on the ID with my ID number, they get the full list of all the things that can't be done (e.g., no electrocautery). It's inexpensive for the peace of mind it brings me.

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  • chloe123
    replied
    Reply

    Thanx for the information. I did go ahead and call Medtronics and they said to turn the device off and go around and get patted down. The wand that they use has a magnet in it, so that would not be good. I had to go to the courthouse yesterday and showed my card (which they didn't really look at) and got padded down. The officer asked me where the implant was and they proceded to feel it. Oh well, better then a shock or jolt from going thru the detector. On the subject of the protrusion, Medtronics also said that that was normal to feel it thru the skin. That would probably be my biggest complaint is that it can be felt outside the skin and that the unit probably could be 1/2 the size. Even the remote could be a smaller unit, it is just so big to carry around in a just in case moment.

    Question, does anyone have an ID bracelet for this? I have heard it was a good idea, but wanted to make sure that if I was going to buy it, that it was a good one. Any suggestions.

    Kimberly

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  • DebbieB
    replied
    Hi chloe,

    I am glad to hear that your InterStim Implant is working for you now..
    As for you losing weight I have had my InterStim Implant for five years now and lost about 28 pounds this year and I to have notice that my Implant is protrude the skin in certain positions, my doctor told me that was ok for me not to worry about it.

    Well as to the question about metal detectors at the airport when I went to the airport in Janaury as I was going on a cruise to the Eastern Caribbean I had full body search it was not very nice at all it was the most embarrassing thing that I have ever happen to me.
    My doctor told me not to go through the metal detector at all and I show them my card and they never look at it..
    As for other metal detectors in stores and other places I have never had any problem with them at all...


    Hugs, Debbie

    Leave a comment:


  • chloe123
    replied
    Discomfort - sights of incision

    I had my permanent implant done 1/4/04. I had alot of pain with this surger, I couldn't lay in a position that would be comfortable. Found out after 5 days that the medtronics rep forgot to turn on my device during surgery. Relief wise for my symptoms: I was going to the restroom 40-60times per day, I now go 5-7 times a day. I was waking up every hour at night to use the restroom and now i go 8 hours with no waking up. I still have a bad urge when I do need to go, but luckily I don't go near as much. It has been a real success for me. The only thing that I would suggest to people thinking about going thru this surgery, is to make sure if your needing to lose weight, that you do it BEFORE your surgery as I gained weight right before the staged implant and right after. So, when they placed the permanent, I was alot heavier. Now I have lost 30lbs and I think the box is lower and causing some discomfort and I can also feel the box in its entirety and will even protrude the skin in certain positions. I'm not sure if that's normal or not. I do have a question. Is it ok to go thru the metal detectors at the airport or a court house? I have my card and wasn't sure if i should just be showing that.

    Leave a comment:


  • littlebear
    replied
    Theresa, I'm so sorry to hear about all you've been through. I'm glad you've posted, though--this community will give you lots of advice, support, and encouragement. Best wishes, little bear

    Leave a comment:


  • ICNDonna
    replied
    For Theresa

    It's been my perception that one of the biggest problems with the interstim is that information may not be being shared with doctors by the company. I do know that I have read many reports from people on these boards, who have had their leads either move or break and also reports of people who have had theirs removed due to ongoing problems. Your doctor has probably not heard about these people.

    My suggestion would be to seek a second opinion before going for a replacement.

    Warm encouraging thoughts,
    Donna

    Leave a comment:


  • christine41
    replied
    Originally posted by TheresaD
    Hi. This is my first time posting. I'm having a terrible time with my stim implant.
    Last year I had it implanted and things were fine. After a few months I stopped feeling the pulsating. I went to the doctor and we discovered that the lead had fallen and was no longer working. This had only ever happened once before to someone in Japan, or says my uro.
    In January I went in and he fooled around with it saying that it probably wouldn't work, but he'd give it a try. Well, it didn't work. It's even worse then before and now we have to start all over with him taking out the old one and putting in the new one. The pain that I'm in is excruciating at the incision point, and it's becoming infected a lot. Which scares me. It's definitely a defective product, and am actually considering taking legal actions, because of how much pain and money this is costing me. But I'm not sure if I should or not. I don't know if I should bother.
    Any suggestions would be much appreciated. I feel for all of you that have had bad experiences. It's good to know I'm not alone.
    Theresa
    Theresa,

    My heart goes out to you as I know how painful IC can be. Have you considered not having a new Interstim implanted? I would seriously discuss this with your doctor, especially if you are not benefiting from the Interstim. I know when I had the DMSO installations, I ended up in worst pain than I was in prior to the installations. I recently read an article wherein researchers are questioning if DMSO can/does cause permanent nerve damage in some patients. This was over a year ago and at that point I decided against any further invasive treatments. Also, I elimanated many of the IC medications I was taking. I find the pryidium works and a low dose antibiotic occassionaly. I manage the chronic pain with a pm doctor and medications.

    Thank you to all who replied and it is good to know we are not alone...

    Leave a comment:


  • TheresaD
    replied
    Hi. This is my first time posting. I'm having a terrible time with my stim implant.
    Last year I had it implanted and things were fine. After a few months I stopped feeling the pulsating. I went to the doctor and we discovered that the lead had fallen and was no longer working. This had only ever happened once before to someone in Japan, or says my uro.
    In January I went in and he fooled around with it saying that it probably wouldn't work, but he'd give it a try. Well, it didn't work. It's even worse then before and now we have to start all over with him taking out the old one and putting in the new one. The pain that I'm in is excruciating at the incision point, and it's becoming infected a lot. Which scares me. It's definitely a defective product, and am actually considering taking legal actions, because of how much pain and money this is costing me. But I'm not sure if I should or not. I don't know if I should bother.
    Any suggestions would be much appreciated. I feel for all of you that have had bad experiences. It's good to know I'm not alone.
    Theresa

    Leave a comment:


  • DebbieB
    replied
    Hi Christine;

    I have had the InterStim Implant for five years now and it was the very last resort of doing every possible meds and treatments available..

    It is something you should read all the information on this procedure I suggest that you find a doctor with lots of experiences and ask to be able to get in contact with one of patients and hear what they had to say about the procedure and the doctor doing it..

    I did not have problems with adhesions at all..

    I only had problems with the InterStim Implant the second year that the lead wire crack in half at the center of the spinal core and later learn that the lead wire was a faulty lead wire.

    You can read about it on the web site at www.interstim.com
    It is not for pain and I was told right up front that is would not help the pain but in my case it helped my pain as I was a lot different in many cases we are all so different and it may help one and may not help another this is like any kind of procedure that you try...

    I know a lady that had her InterStim Implant done in 1982 and doing just great with her it has been around for a while..
    They are updating the InterStim Implant in the way they do the procedure then the way I had my done five years ago..

    Debbie

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  • ICNDonna
    replied
    Jolene is correct. The reports just aren't out there for review. I absolutely agree that this should be considered only when all other treatment options have failed.

    Donna

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  • dyno
    replied
    Christine,
    I have not had the Interstim, but have researched it and know what I have read here on the boards.

    From my understanding, Interstim has been around for awhile, I am thinking maybe some where around mid 90's, but I am not sure on that, but the last I heard there has been no 5 year study released yet. It is not approved for IC, it is approved for frequency. It is not approved for pain. It is suppose to be a last resort treatment when all other more conventional treatments have been tried and failed.

    Leave a comment:


  • christine41
    replied
    Originally posted by Teri
    It has been 6 months since I have had the device removed and I am still having involentary jerking movements in my arms and my legs.....I can't imagine what damage is going to show itself down the road
    Do any of you who have had the interstim have a history of adhesions? I am curious what role adhesions could play when having the interstim (surgically) implanted..

    Also, how new of a treatment option is interstim? I had read it is not yet approved by the fda for IC and am wondering if this is still the case?

    Thank you to all for sharing your experience with the interstim -- both positive and negative. I printed out the questionare and am saving it. Very excellent list of important issues to consider.

    Leave a comment:


  • Teri
    replied
    It has been 6 months since I have had the device removed and I am still having involentary jerking movements in my arms and my legs.....I can't imagine what damage is going to show itself down the road

    Leave a comment:


  • rachelm
    replied
    Well I did go to my pre-opp appt. with my list of questions. My fiance felt that it was a bit over the top but I explained that they were just a guide for me and I had already found answers to several listed. I didn't go down the list as an interview although if I had it would have been perfectly fine. My dr. is known throughout the hospital for his caring and listening skills with his patients. It's always so interesting to hear what other professionals like nurses and orderlies have to say about my dr. that I love so much.

    I feel fortunate to have found him after only 9 months of searching. I trust him completely but I will continue to ask questions as I feel I need to. His nurse is also always there to listen and help me out as well. As a matter of fact I was in their office this morning very upset because my fiance was bothered and angry that I felt the need to call the on call nurse over the weekend. He waited until we were out the door before he unleashed this on me and it hit me really hard. He is unlike many men and has been extremely supportive along the way but I think he's just wearing from the stress of my illness while we get ready for our wedding. Needless to say he took me to the dr. and they agread that I definitely needed to be seen so I felt validated. I was still and emotional wreck and the nurse could tell that I had been crying. I waited to Brian was away before I told her what he was upset about. She told me I did the right thing and it's always better to be safe than sorry.

    This process has been an emotional journey for me last year with the diagnosis and the addition of new drugs and now as I adjust to the InterStim implant. I will continue educating myself about this disease and the possible treatments for it. I will never appolagize for inquiring about something happening to MY body. Anyway my fiance later appologized and admitted that he's been stressed lately. I know that I probably overreacted but for God sakes cut me some slack because I have a 3 inch gash in my butt!

    I had my stage 2 implant on Thurs last week and am doing very well despite my concern of infection (which is why I called the nurse) The huge welp like swelling went down today but it has been draining like crazy so I'm having to change the bandage every hour or so to keep it clean. Brian, my fiance, is doing this for me which is helpfull. I feel great except for the sting and pressure at the incision site that is subsiding each day. My pelvic pain has been greatly reduced and if I do as well with the implant as I did with the trial I will be able to go off all pain meds!! I'm hoping that my recovery goes smoothly because my wedding dress has to be altered next week and I'm on a strict time line leading up to June 26th. My family has been very helpful so I'm not stressing about the details yet. As long as my miracle box keeps on ticking I'll be o.k. I was very releived to hear my dr. say that he only has to do revisions about 10% of the time because he places the leads and confirms the stim with the patient half awake. I never felt anything except a little zap the first time and the second time not at all. I'm nauseas but that's not uncommon for me. I will be going back to work and grad class tomorrow at which time I will be teaching in front of my fellow classmates and prof. I'm praying that this all goes smoothly and I'm promising to take it easy throughout the day.

    I finally got the nerve to turn my box up a notch yesterday and it worked! I just needed to know that I could control it in case something was wrong that needed to be fixed. Thank you all so much for your support! Sometimes even our most understanding loved ones don't get it like you. Take Care!!

    Jill, yes you may certainly use the list of questions. I will be passing it out to our support group as well.

    Thanks,
    Rachel

    Leave a comment:

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