Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Thanks Kathy, Yeah, has been leaking since about August. After she had pneumonia, and hello she coughed her head off, if you can pop a stitch from peeing....I can't even imagine what could happen from coughing! Thanks Again, Tommi --- DK Moulton wrote: > Hello and Congratulations on your daughter being a > good, strong advocate for herself. These are skills > she will need for the rest of her life; irregardless > of a disability or not. > > My first surgery, the leak didn't appear until after > about six days at home. It was either from bending > over then kneeling on my kitchen floor to clean up > spilled milk, or straining to try to empty my > bladder ... both occurred on same day as the leak > started. > > My fourth or fifth untethering the leak started > about two-four weeks post-op. No clue what started > that leak, but that one was to the outside and as > I've mentioned, had me flat on my back for 50+ days > before my nsg agreed it was necessary for surgical > intervention. > > Time after surgery with a leak is not relevant, as > you and your daughter now know, as I know and as > others know... > > Kathy > Update > > > Hello > Well we finally have the NSG convinced it is the > Pseudomeningocele > causing all of her headaches. He has agreed to do > another MRI, to > see if the size has changed at all. Then if it is > the same size he > will do surgery, if not then he wants to wait to > see if it goes away > on it's own. I was totally confused, and asked why > was it before > when she had a Pseudomeningocele the NSG repaired > immediately. He > really did not answer the question but said he has > never seen a > Pseudomeningocele appear a couple of weeks post > op, that it is > usually immediately after surgery. Her last > Pseudomeningocele > appeared a couple of weeks later! What is anyone's > take on that? > Also, I was so proud of how handled the > situation, she showed > me how grown up she really is! She told him that > he needed to fix > this, because if it wasn't bad enough she has the > neuropathic pain, > she now has this pain to deal with, and that pain > is immobilizing. > I am so sure he was thinking to himself.....her is > a hormonal, > teenager. But, she then clarified that also, she > told him you better > believe I am depressed.....imagine if you knew > that all day everyday > all you could do was lie down. She told him to put > himself in her > shoes. She is missing everything, she told him > everything is not > waiting for her to feel better things are going on > and she is > missing them!! Hurray for her! I really had to say > nothing... > That is when he agreed another MRI should be done, > and told us to > wrap her neck. He said that would help speed up > the CSF flow, but I > have to tell you it hasn't worked! > Thanks for listening.....Also, if anyone has any > other experience > like this PLEASE share!! > Thanks, > Tommi > 's (13), Mom Chicago, IL. > > > > > > [Non-text portions of this message have been > removed] > > Tommi 's Mom Chicago, IL. USA ________________________________________________________________________________\ ____ Sponsored Link Mortgage rates near 39yr lows. $310k for $999/mo. Calculate new payment! www.LowerMyBills.com/lre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 - Dear Tommi, so happy that someone is finally listening to you! Robby had a csf leak about 2 wks post op and the headaches were unbarable for him. I can't imagine your doc letting your girl go that long. We were told in the hospital for Rob to drink caffiene soft drinks because caffiene helps replenish spinal fluid. All the best for you and your , will continue to pray for you both. BarbR. -- In tetheredspinalcord , " Tommi " wrote: > > Hello > Well we finally have the NSG convinced it is the Pseudomeningocele > causing all of her headaches. He has agreed to do another MRI, to > see if the size has changed at all. Then if it is the same size he > will do surgery, if not then he wants to wait to see if it goes away > on it's own. I was totally confused, and asked why was it before > when she had a Pseudomeningocele the NSG repaired immediately. He > really did not answer the question but said he has never seen a > Pseudomeningocele appear a couple of weeks post op, that it is > usually immediately after surgery. Her last Pseudomeningocele > appeared a couple of weeks later! What is anyone's take on that? > Also, I was so proud of how handled the situation, she showed > me how grown up she really is! She told him that he needed to fix > this, because if it wasn't bad enough she has the neuropathic pain, > she now has this pain to deal with, and that pain is immobilizing. > I am so sure he was thinking to himself.....her is a hormonal, > teenager. But, she then clarified that also, she told him you better > believe I am depressed.....imagine if you knew that all day everyday > all you could do was lie down. She told him to put himself in her > shoes. She is missing everything, she told him everything is not > waiting for her to feel better things are going on and she is > missing them!! Hurray for her! I really had to say nothing... > That is when he agreed another MRI should be done, and told us to > wrap her neck. He said that would help speed up the CSF flow, but I > have to tell you it hasn't worked! > Thanks for listening.....Also, if anyone has any other experience > like this PLEASE share!! > Thanks, > Tommi > 's (13), Mom Chicago, IL. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 I'm new to this group, and posted I think last week about my daughter, . She had her surgery to detether her cord on Thursday and that went very well. The doctor said it appeared that everything sprung back to where it was supposed to. She is still in ICU, as they decided to do a bowel flush on her because her intestines were so terribly backed up from being chronically constipated for so long. We are hoping that she will be completed with that and discharged tomorrow. Jon Quote Link to comment Share on other sites More sharing options...
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