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Thread: update on tethered cord surgery

  1. #1
    Junior Member
    Join Date
    May 2002
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    erie pa usa
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    update on tethered cord surgery

    hi all, well i had my operation on may 28th. i vomited for over 24 hours, had a headache--yet, no one was suspicious that there might be a problem.on thursday morning the PA was going to discharge me--i had not even been out of bed yet! 20 minutes later he came in the room with my surgeon--i asked him why my belly looked like i was expecting quads! i had an ileus, plus, although the doc had forgotten to write the order i was supposed to have been laying flat for 48 hours because i had a rather bad spinal fluid loss during surgery. and to think his PA was going to d/c me. it took until sunday before the ileus righted itself, but on saturday a different PA found that my back was leaking fluid--quite a large amount. sunday before i was d/c'd it had gotten worse--but he knew how badly i wanted to go home so he let me go with a long list of instructions. we had a 2 hour drive home. as soon as we arrived home i was saturated. told to return to pittsburgh monday.

    before i get into my second admission i must say i have never been in a hospital with worse care than allegheny general!!!!!! they only do bowel routines on m-w-f---too bad if you do it any other way. they don't believe in using hoyer's as they are too dangerous??? the place was filthy!!! it was pretty scary!!!!!!

    week 2. i had to have a shunt placed in my back and all new sutures--lay flat for 4 days. i was d/c'd saturday and all seems well.

    i forgot the best part. the surgery itself was very successful. i am very happy with the outcome. my pain level is down more than 95% on the right side and about 65-80% on the left. my left had always been the worse. i would have the surgery done again in a heart beat but i would want to check out all the conditions in the hospital first. we had a lot of problems with the nurses. this is very unusual for us. i was a nurse and i have the upmost respect for them and i am very patient and understanding---but some issues just could not be ignored.

    well thanks for letting me let off steam and update you all. kathy

  2. #2

    Care received

    I am glad your surgery ultimately went well, but I would encourage you to write a letter to the director of nursing complaining about the poor nursing care you received, and their inflexibility and lack of provision of patient centered care.

    I would also recommend that you write a similar letter to the medical director's/chief of staff's office to complain about the substandard care your received from these PAs.

    I know at the hospital where I work, such letters are taken very seriously and there is always follow up required by the management people who supervise the staff involved. As a nurse, I am sure your letter will be treated with extra attention (unfortunately all patient complaints should be taken seriously, but some are taken more seriously than others!).

    (KLD)

  3. #3
    Senior Member krajaxa's Avatar
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    Dec 2001
    Location
    New Castle, PA
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    306

    allegheny

    You just scared me pretty badly. My hubby might have to have a cyst drained there. It's the only hospital that's close by and our insurance covers it. I wish we could go to UPMC where he had his surgery done at the first place, but our insurance doesn't participate. But hubby will keep his mouth running well, if he is not getting care he is paying for. He has proved that before. BTW, he needs to empty his bowels daily...

  4. #4
    Senior Member
    Join Date
    Jul 2001
    Location
    LaGrange
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    258

    What is un-tethering and why does it help...

    Talking about hospitals--I was in a med school hospital that advertises there SCI unit and rehab quality care--for my bowel program they kept giving me laxatives only--they said I would eventually go!!! I didn't know any better then, but I do now and next time they will run a bowel program on me...

    EM

  5. #5
    Gosh, sorry about all the hassles and complications you encountered but I'm glad things worked out in the end. Continue to get well!

  6. #6
    Junior Member
    Join Date
    May 2002
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    erie pa usa
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    26

    tethered cord

    hi, just another update for you all. i was d/c'd yesterday for the 3rd time from agh. i was still leaking and they were going to do a re-explore on wednesday but we had sooooooo many people praying for me that GOD intervened and stopped the leak! it was the miracle we were praying for.

    this admission went much better. the nurses were much more alert to my "special needs" i had no problems with bowel routines or turns---imagine that. after speaking up for my needs with many upper management people at agh i received the care i needed. sometimes nurses and dr.'s just don't think about all the differet special circumstances patients have--they become complacent with the same old routine. well as i put it to one nurse " how would would you like if i told you to follow the same bowel routine that you expect sci patients to follow? only have a bowel movement on m-w-f--too bad if it is saturday and you have to go. you wait until monday!!!!!!" she got the message. i explained that it was not healthy for most most sci patients to wait that long----we could become impacted or have autonomic dysrefexia or be just plain miserable and not really know why. we need to speak up for our needs and be insistent with the staff----they even came to love my hoyer lift and believe me i will be advocating vigorously for the hospital to get a new hoyer lift as theirs is outdated and dangerous.

    the hospital still receives low marks for cleanliness but my care was much better this time. i hope it was my last admission. i am still doing well with the pain some of it has returned but i am hoping that as my spinal fluid returns to normal that the little pain will also subside.

    sci-nurse believe me i will be writing several letter's now that i am home and feeling better. i have a pretty bad headache that my doc says will go away when my fluid returns to normal--i lost a lot of spinal fluid through all my leaks. thanks for all your encouragement, kathy

  7. #7
    Junior Member
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    May 2002
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    erie pa usa
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    26

    for krajaxa

    hi krajaxa, your husband will do ok at agh. you may need to speak up for your special needs, but if you do it firmly and insistently it will be fine. once the nurses understood they were much better. they weren't really skilled in the bowel routine i follow-----but they learned to do it my way. i just use dig stim--they wanted to give me suppositories and enemas----- i am going to be writing to the hospital about these issues so hopefully they won't happen again in the future. the cleanliness is a big issue for me as i have a groshong central line iv in my chest, i had the shunt in my back and a foley catheter--too many openings for germs to enter. i hope all goes well for your hubby. i am doing well and i really like dr. wilberger. who is your hubby's surgeon?

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