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Thread: Clinical trial for women with SCI (bladder)

  1. #11
    Hi mlkost,

    How did everything go with your surgery. Hope you are recovered well and enjoying the benefits of your new bladder. We Would love to hear about your results and experiences.

    "The impossible is just that which hasn't been done yet.Impossible is nothing"

  2. #12
    Member mlkost's Avatar
    Join Date
    Dec 2004
    Schuylkill County Pennsylvania (Northeast PA)

    1 year later

    Well surgery went well. They staff was very helpful and nice. The worst experience during the whole ordeal was that Thomas Jefferson Hospital, Philadelphia is not accessible for handicap patients. Out of 998 beds two rooms were accessible. I was inpatient for 21 days and was put on a waiting list for an accessible room, finally got an accessible room two days before discharge. I was on the seventh floor of one bldg. and had to go to the third floor of another bldg. to get a shower. When it came time for bowl program it was absolutely horrible. I was shocked! For a University Hospital that does so much research. It is not meant for anyone paralyzed.

    Anyway as for the clinical study, the surgery went well. I was told that I would probably be discharged in approx. 10 days. I had a cystourethrogram which is done in radiology to test the bladder for internal leakage. They filled my bladder with dye fluid and had leakage where they attached the new bladder to the existing bladder. The required protocol from Tengion (the lab conducting the study) was not to be discharged until there was no leakage at all. Finally on the 21st day post op there was no leakage. During the following six weeks after surgery I had both a Foley catheter and a Supra pubic catheter to keep the bladder empty for healing. I healed very well. However, I still leak and am incontinent. I have noticed a much larger volume of urine. I still cath every 3 hours - prior to surgery I held about 200 cc. Now I hold 400. My concerns now are -- Is my kidneys working harder to produce twice as much urine? I asked Dr. and he said it is nothing to be concerned about.

    If anyone has any questions feel free to ask.

    I will check back soon

  3. #13
    Thanks for posting,

    what an ordeal at the hospital! I cannot believe the lack of acessible rooms, thats CRAZY!!! MOst people in hospital could do with more space, grab rails etc. Good on you for surviving in there.

    Hope you are all healed up and feeling great.

    I have a few questions if yuo dont mind,

    1. Now that you have had the surgery Do you think it is worthwhile fo others to wait for this procedure to become available, or would you go with bladder augmentation using the bowel which is currently available?

    2. Do you know why you are still leaking, and can anything be done to help with this?

    3. Hve you had trouble with infections, mucous or any other issues

    4. where and how big was the incision? Hope it healed up ok for you

    5. How long was your recovery, before you got all your strength back and felt normal again

    Thanks heaps for posting about your experience, there have been quite a few threads with people wondering about this trial. It's so helpful to hear from you that it has helped increase your capacity.

    "The impossible is just that which hasn't been done yet.Impossible is nothing"

  4. #14
    Member mlkost's Avatar
    Join Date
    Dec 2004
    Schuylkill County Pennsylvania (Northeast PA)

    answer to your questions

    I feel so frustrated at times because of the leaking. I always was an impatient person. I was hoping having a larger bladder would stop the bladder spazms and prevent the leakage. My Dr. said to be patient, that it takes one year to eighteen months for the bladder to wake up. He explained that the bladder is traumatized and stunned from the surgery. Even though surgery was successful it takes time for it to wake up.

    Some days I get so pissed off because of being wet. I will moan and groan to myself that the surgery was useless, especially in the morning when I wake up. I can't remember the last time I woke up dry without a foley catheter in. It has been at least three years ago. Then there are days I am amazed at the amount of urine I held. As for bladder augmentation you have a higher risk of bowel problems and infection. I do not have to take any kind of anti-rejection drugs. I do take Ditripan 30mg daily. I took that amount prior to surgery also. I have suffered several UTI's but no more than what I had before surgery.

    For about the first 6 months after surgery there was a large amount of sediment and blood in the urine. As for the incision I was cut from my navel to the pelvic bone through my C-section scar. I also had the supra pubic cath inserted and a drain tube. I had c-sections in 1985 and 1988 and was cut across side to side. I healed up very nicely. Staple sutures were removed about seven days after surgery. I had constipation for over a week and started vomiting. I had to take more laxitives than I usually take and had a NG tube inserted through my nose into my stomach. That was one of the most horrible things I ever had to do in my life. If I would have been in a room with an accessible bathroom I would not have had to go through the trouble of dealing with constipation, NG tubes or vomiting. During my stay I was set up for physical therapy. I got my strength back in about two weeks. At the time of my surgery I was working part time from my home. I had my laptop computer with me at the hospital and was doing work 16 days post op...
    I had my one year checkup on 1/21 and talked about the leakage. He suggested a procedure of taking tissue from my abdomen and putting it around the urethra to reinforce it. I said lets do it. He has to check with Tengion (the lab) to make sure it does not interfere with the protocol. Anytime I am laying down I leak. No matter if it is for one hour or all night long. This is the reason he wants to reinforce the urethra.

    I was told not to drive for at least two weeks after I was discharged. I was so tired of being inside I was driving the day after I got home. I have a daughter and a niece that played basketball and was at their games the same week I was discharged. I never missed any of their games except for the few while I was in the hosp.

    Here is the link of my surgery. Copy and paste it to your browser. CBS recorded my surgery. It does not identify by name. Just as a women with spinal cord injury with an overactive bladder. Dr. Patrick Shenot is my Urologist who did the surgery.

    I will check back soon

  5. #15

    Thanks for your post, and the video. I must say it was AMAZING to see your 'new' bladder before they put it into you. Incredible technology. Just wish it worked out better for you.It must be so frustrating to go through surgery and still leak.

    I have had a foley in this year, first time in my life with no leaks. Thats why I'm reluctant about any surgery.

    I hope they can do another procedure to help you. What about an artificial sphincter, would that work?

    Does your urologist have any idea when this procedure is likely to become available to others outside the tengion trial?

    It seems silly for myself and other cc ers to consider a regular aug using intestines if this new improved technology is available soon.

    Hope you have some luck with your next procedure, keep us posted.
    "The impossible is just that which hasn't been done yet.Impossible is nothing"

  6. #16
    Hi all

    So I was just wondering whether anyone knows what's happening with this research/procedure now? I looked up the clinical trial site and it says the study has been terminated.

    It seemed so promising to grow your own bladder as oppossed to using a patch of bowwl. Does this mean it doesnt work and has been cancelled, or is further testing // refinement going to be done?

    Be interesting to hear

    This is a link to the clinical trial site about it
    "The impossible is just that which hasn't been done yet.Impossible is nothing"

  7. #17
    I certainly want to know more about this so will check in periodically!

  8. #18
    Member mlkost's Avatar
    Join Date
    Dec 2004
    Schuylkill County Pennsylvania (Northeast PA)
    Hi Miss Sept. & Brenda. The clinical trial I participated in is now closed. I received a letter over a year ago stating that all research and studies from this trial were complete.
    However, I was dropped from the study early because of other complications. After the trial. I still continued to leak. The problem with the leakage actually had nothing to do with the clinical study. It was all within the urethra. My urethra was just worn out from constant catheterizing. In March 2011 I had to have more surgery. I had a huge ovarian cyst(soccer ball size) that was giving me problems and had to have a hysterectomy. I talked to my urologist (Dr. Patrick Shenot) @ Thom. Jeff about having bladder augmentation and sling to my urethra done at the same time. Dr. Shenot talked to OB/GYN and scheduled procedures for one surgery. I was glad they could kill two birds with one stone so to speak... I now have a giant triple size bladder. Everything is going well. THe only down side is mucous from using bowel tissue for augmentation. Sometimes the mucous blocks up the catheters. I am so happy I do not leak anymore. I still catheterize every 4 to 6 hrs.
    If you or anyone is having urological issues I highly recommend Dr. Shenot @ Thomas Jefferson, Philadelphia! I feel he is the best of the best for spinal cord injury and neurological bladder problems. The whole urological staff and dept. are great people. Very friendly and helpful.

  9. #19
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    I was offered the sling surgery ... was told it was major. Going to try and limp through 2013 with my bladder.

    I am still against an augment .. unless they can use a tissue expander like they do in plastics.

    Thanks for posting your experiences. Leaking here too after 20+yrs of crede/valsalva.

    Just increased my foley to size 18fr and that helps tremendously .. but I know it won't last as my urethra adjusts to it.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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