Announcement

Collapse
No announcement yet.

ANOTHER FRUSTRATED INTERSTIMER...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • chady
    replied
    Debbie,
    I am so sorry to hear that you are having those problems...have you tried turning it down lower or as low as it will go, or off/
    My trouble is swelling in the spinal area,cannot walk far at all, cannot sit like normal as the spine cannot take any pressure on it,cannot stand even to do my hair in the morning,have severe pain in the spine and the neuro cannot really even touch there due to it,one leg is very effected and has alot of numbness and lack of feeling in part of the foot,the circulation in the one leg is bad and the foot will discolor,cannot lay on my back,sit erect like I said, I have to sit on one side or the other due to the pain and presure in the spine which has now traveled to about the waist line,have tremors in most of the body and problems where the generaor is with permanent nerve damage also where the generator was before it was revised,cannot drive except to maybe the store and back due to difficulty sitting and pain,walk with a limp,cannot move the toes as you would normaly due to the nerve damage in the spine all of which is being tracked by a doctor until one removes it.....have morphine to help with the pain if need it but, I have IBS and that is hard on that and I refuse to live on pain medication forever,cannot lean over or bend over at the waist,cannot lift at all not even a 5#bag of flour.
    I do hope that you or no one else gets those kind of consequences...mine has been in too long according to the doctors but, I can't get it out as others have run into also..so like the lawyers say each doctor that refuses to remove the device is causing more problems....he says that is not good and hopefull there will be a doctor soon that will care enough about my body and nothing else...the company will not help me and has not from day one nor the doctors that operated on me..other doctors are afraid or do not know how.
    Please watch over yourself very carefully only you really care about yourself and what happens to you....do not risk your well being and your ability to be mobile or live happily. Any more problems than you are having please get it out...mine too started slow and in the legs.
    take care of yourself
    you are in my thoughts

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Hi! Chady
    I asked you several question the other day before your response to Mary about your interstim? HAVE A NICE WEEKEND!!!

    Leave a comment:


  • mary a
    replied
    I'm not going to have it taken out... It is a test that will tell my doctor what exactly is wrong. It will measure (I don't know how exactly) my bladder nerve response to the impulses of the interstim. Depending on this, he will decide if he has to move the lead to a different placement, or maybe check another sacral nerve. It is not invasive, and this test is something new that can help my doctor make decisions, not only asking you what you feel and looking at your toe or rectum as in the test and implant.
    I may have sounded very frustrated sometimes, but now that I have an appointment date again (I hope the hospital don't cancel it again!) I'm more relaxed.I don't know what will I decide, but since I have not had any permanent nerve problems from the interstim, I'm still positive that maybe with a relocation I will have the results I'm waiting since my implant surgery (october 2001)
    My appointment is aug 1, but maybe I'll have to change it (I have too much work on those days) and I will see if I can change it to the second week of august.
    I really thank all of you for your posts. It will help me decide what to do after this test. I'm very hopefull yet... I know from this board patients that had a revision, and after that they found the results they where looking for. And at the same time, I'm more informed about permanent problems that other patients have from this implant. I think that with every medical procedure, surgery or implant, there can be are irreversible problems. I'm very sorry for all of you, and I pray that I don't end with this kind of nerve damage some of you have.
    I will post later in the day telling the final appointment date.
    THANK YOU ALL !!!!

    Leave a comment:


  • ICNDonna
    replied
    The only time a negative post about interstim would be deleted would be if it contains negative comments regarding a specific identifiable physician or posts which direct negative comments towards any other individual posting here.

    If you have a question about a particular post, please email me either via private message or just scroll to the top of this page and click on ICNDonna.

    Thanks.
    Donna

    Leave a comment:


  • chady
    replied
    Mary,
    Do you have a scheduled appointment to get your interstim out yet?
    Also why is it that when negative post are made about the interstim they seem to disappear so fast. I do not understand that. What is the reason for that?

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Hi!! Chady
    What problems do you have with your interstim? Why did you have the interstim put in? Did you have any good results with you? I've been having some problems with my interstim. I've been having some lower back pain on the left side where the lead is placed. I've been having some leg pain. Do you still have your interstim in? Have a nice day!!

    Leave a comment:


  • dalsup
    replied
    After 4 months of Elmiron therapy my physician referred me for Interstim installation. After watching the video and asking about success/failure rates and complications, I told my doctor he was crazy to think that I would subject myself to this. Especially the fact that I would have a buzz in my butt and could get shocked going through security at stores. I was very depressed because he told me that I was just going to be one of those people that the current method of treatment would not help. Well...... I decided if they can stimulate my nerve so can an accupunturist. I have been seeing one for about two months once a week, and what an improvement. She is also working on detoxing my liver from the 15 medications I was on at one time. She is also treating me with an herbal tincture for depression and it has worked much better than the three antidepressants the psychiatrist has me on. So one by one I am dumping the antidepressants and sexual side affects. [img]wink.gif[/img] Ya never know what might happen. I just would hope anyone considering intersim think long and hard and do a lot of research. Ask to talk to your doctors other patients about it not just the ones it worked for. Good luck on your healing.

    Leave a comment:


  • mary a
    replied
    I sent the message by email, thanks everyone for your support, I{ll tell you when will be my new appointment date, and after it what did I decide to do next.
    <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" />

    I REALLY THANK GOD TO LET ME FIND THIS SITE AND KNOW ALL OF YOU!, I DON'T KNOW WHAT WILL I HAVE DONE WITHOUT ALL YOUR SUPPORT!!!!!!! <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

    Leave a comment:


  • songbird7
    replied
    Prayers on the way for you immediately. May you get the help you need.
    Gentle healing and hugs
    Songbird

    Leave a comment:


  • chiaq
    replied
    mary; i know how you feel. i don't have the interstim,but i have the neurostimulator which is pretty much the sameexcept the neurostimulator is put in to help with pain.i was susposed to have a new surgery done on mine last month . i had some problems that came up and had to put it off. when we got ready to do it my insurance is dragging their feet on paying for it. mean while i have a stimulator i could use if i wanted to lay down all of the time. i have to have it turned up so high it hurts my rectom so i only use it once in awhile.i am worried now what if the ins. doesn't pay for that or for my dr to finish this one .it is a shame .these surgeries all should all be approved even the ones later .i am sorry it just ticks me off the way we shuffeled around deedee <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Mary, I had the revision done because was not getting any response from it. I was going about 45 times before inplant and I was down to 8 times a day in the trail study. When they turned on the interstim I was getting sensation in my rectum and was going about 32 times in day. I had it reprogram about 5 times and then the doctor thought maybe the lead had moved. So I had X-ray done and he decided to move it to another spot. I had to spend 1 night in the hospital. It took him about 2 hours to do it and when I woke up in the recover I had more pain then from the first time.

    Good Luck!! You may e-mail if you want to ([email protected])

    Leave a comment:


  • mary a
    replied
    I had my surgery on october 2001. I had more or less 5 adjustments, but when the rep. tries a different electrode my leg rotates too much if I'm lying down, so he always returns to the same electrode that does not make my leg move too much. It has not helped me, but my doc and the rep think that maybe it is too deep or maybe anther sacral nerve can work. After this test, I will have answers, and I will know what is next... Why did you had a revision surgery for? Was it as invasive as the implant surgery? did you had to stay overnight in the hospital?

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Mary I'm sorry that your apt. was cancelled. Is your interstim working at all? When did you have your interstim implated?

    I had my interstim implated April of 2001 and then I has revision done last Aug. 2001. So, I had my interstim reprogramed about 10 times but it works 50%. I had it reprogram last Thru. and the rep told me there is no more reprograming she can do for me.

    I'm prayer for you so you get a apt real soon!!

    Leave a comment:


  • MelanieJ
    replied
    {{{{Mary}}}}}
    You'll be in my thoughts.
    Sending healing wishes,
    Melanie J.
    <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

    Leave a comment:


  • mary a
    replied
    an update:
    my appointment was cancelled by the hospital, not my doctor...
    I have to wait for maybe 1 more month... I'm very frustrated!!!!!, I really need this interstim to work, or at least know why it is not working!!!! I was so excited that my appointment was coming in just 3 more days... At this point I really don't care to go thru a new test in another nerve or a new revision, I just want this frequency and urgency to go away!!!!!
    PLEASE PRAY THAT I GET A NEW APPOINTMENT AS SOON AS POSSIBLE!!!!!!! <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> [img]mad.gif[/img]

    Leave a comment:

Working...
X