Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Mine hasn't come back. I wouldn't take that as any sign because mine was gone long before my second surgery. --- tommi wrote: > Hello all, > I was wondering if maybe someone could help me > understand something, has no feeling she says > when she urinates. She knows when she is full,and > has > to go, but does not know when she is going. I asked > the NSG, and he said that could take awhile to come > back, but it is scaring me, anyone have it come > back? > I thought once it was gone, it was gone! > Thanks! > Tommi > (13) Mom Chicago, IL. > > Tommi > 's Mom > Chicago, IL. USA > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 my feeling never returned after the two release surgeries. I can feel when my bladder is very full, but not until then. Plus I can't feel when I've gone until it gets further down my legs:) feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Mine, also never returned, however and someone correct me if I have the inches wrong, but nerves heal at something like one inch every three months. So, there is always, always, always hope. Look at people who get feeling back years later, or can feed themselves three-five years after becoming paralyzed. As long as she's trying to feel it and always attempting to see if she can " feel " it, it gives her brain an area to concentrate on (IMHO.) Kathy feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Thanks, Maybe not the news I wanted to hear, but at least I can prepare myself to be strong for ! Kathy all you were missing from you e-mail was the rah rah rah!! Thanks! Tommi 's (13) Mom Chicago, IL --- Moulton wrote: > Mine, also never returned, however and someone > correct me if I have the inches wrong, but nerves > heal at something like one inch every three months. > So, there is always, always, always hope. Look at > people who get feeling back years later, or can feed > themselves three-five years after becoming > paralyzed. As long as she's trying to feel it and > always attempting to see if she can " feel " it, it > gives her brain an area to concentrate on (IMHO.) > > Kathy > feeling > > > Hello all, > I was wondering if maybe someone could help me > understand something, has no feeling she > says > when she urinates. She knows when she is full,and > has > to go, but does not know when she is going. I > asked > the NSG, and he said that could take awhile to > come > back, but it is scaring me, anyone have it come > back? > I thought once it was gone, it was gone! > Thanks! > Tommi > (13) Mom Chicago, IL. > > Tommi > 's Mom > Chicago, IL. USA > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Hi Tommi, used to mix up her bowel and bladder signals. She knew she had to go, but seemed surprised when it was not the kind she thought it would be! This did get better after surgery (filum release). Sure hope everything works out for . Best wishes, 's mom feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 NOPE! Our daughter had absolutely NO feeling she was going either way and since she had the bladder aug, etc. she feels everything! It is awesome! Don't be afraid! Your child will re learn the feelings/signals! Natilee feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 What is bladder aug.? Thanks, Kathy (Probably if I've been able to keep up with msg's I'd know what it is - sorry.) feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 It is like a Bladder enlargement. There are several Links about it on my Site. http://www.mybookmarks.com/public/SB_Parents Go to the Subject: Tolieting Problems and Needs Sorry it is disorganized........that Subject grew and I just haven't taken the time to reorganize it. Me Nebraska, USA mymocha@... > What is bladder aug.? > > Thanks, > > Kathy (Probably if I've been able to keep up with msg's I'd know what it is - sorry.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Moulton wrote: >Mine, also never returned, however and someone correct me if I have the inches wrong, but nerves heal at something like one inch every three months. > My nsg said something like an inch a year. It has been 7-8 years post op for me. My " numb-level " was at the top part of my left thigh. The difference between full feeling and partial numbness. That level is about 2 inches down from where it was 7-8 years ago. Also when I was younger, I severely cut my left middle finger. It took about 5 years before I had feeling at the end of the finger again. Even today, it will get cold very easily. I just read an article in this month's Popular Science. It was about injecting some kind of fluid into the area where nerves are damage. This fluid provides the environment for nerves to grow (absolutely nothing to do with stem cells). They severed the nerve root to the eyes of a mouse, did the injection, dont remember how long, but the mouse regined eyesite. By 2010 they are supposed to be able to start trying this on human stroke vicitims. Looks promising for us with nerve damage from TSC. I will see if I can find the article on-line and post it. I do not have the magazine where I am at right now, wont be back home until Sunday. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Sumchyk was found muttering these words: At first I had no feeling and self-cathed, now it is hypersensitive and I have to take medication for urge frequency (ditropan) -- but I only had surgery in March so still in early healing stage. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Sorry.....I'm starting to talk like the doctors do ...uuugggghhhhh - please stop me! Ok...just kidding... Bladder Aug is actually Bladder Augmentation. A reconstructed bladder. When our daughter was 7yrs old she was still in diapers. She had absolutely no bladder or bowel control so I think you can imagine. Our doctor (AWESOME!) reconstructed her bladder because it was the size of a small apricot and had no muscle at all to it so she had no bladder control - she leaked all the time and didn't empty her bladder completely because she had no muscle to push it all out. The doctor took part of her bowel since bowel grows and attached it to her bladder and her bladder has grown. In the beginning of the procedure we had to cath her every 1/2 hour since her bladder wasn't used to holding so much. And we gradually went up to about every 3 hours or so. She now has a normal functioning bladder. I hope I explained this well. If I did not please feel free to let me know Natilee feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi You explained it great. My problem with my bladder is the sphincter though (God, I hate that word for some reason....I feel like my nineteen year old son when I say it, for some ungodly reason, I cannot say it without blushing or laughing...horrible...I know.) Okay, back to business - The first sphincter at the bladder neck is clamped shut. Do you n know enough about bladder augmentation to know if the surgery helps that problem, or is it just for bladder size/muscle tone? Thanks again! Kathy co-owner, co-moderator feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hi! I am not sure about that....I think our daughter's sphincter :} was tightened or something like that. I know she has a 'sling' or something like that so she doesn't leak urine through her urethra... Sorry....not too sure about the bladder neck and all that....are you having problems? I'm pretty sure the doctor who is familiar with the bladder augmentation should have knowledge about the sphincter as well. Any thing else I can do for you let me know! Natilee feeling Hello all, I was wondering if maybe someone could help me understand something, has no feeling she says when she urinates. She knows when she is full,and has to go, but does not know when she is going. I asked the NSG, and he said that could take awhile to come back, but it is scaring me, anyone have it come back? I thought once it was gone, it was gone! Thanks! Tommi (13) Mom Chicago, IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Kathy, I think augmentation is mainly for small/spastic bladders. I had one friend whose doctor described it as " hostile bladder. " V Quote Link to comment Share on other sites More sharing options...
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