Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Barb, had a leak post op the 2nd time in. And, the had to surgically repair it. She is not leak fluid externally, and it is not reaching skin level like when she had pseudomengicele. How old was Rob when he first had surgery?? Prayers are always welcomed!!! Tommi --- brbrrss wrote: > Dear Tommi, > > I, m sorry for not reading all the posts before my > last message to > you. It sounds like your daughter has just recently > had surgery. > Robby had a CSF leak after his second surgery, and > they watched it > for a little while. His incision became inflamed, > and began leaking > after we got home, so it was back in the hospital. > He ended up with > a staph infection and had to have more surgery to > repair the leak. > I think his headaches disappeared pretty quickly > after the repair. > But it is just horrible to watch them go through the > pain of those > horrible headaches. I am shocked to think that the > neurosurgeon > would imply that your daughter was trying to ditch > school.Maybe he > was joking, but completely inappropriate as far as I > am concerned. I > think I would try for a second opinion. The problem > that we have > here in the Detroit Area is that peds neurosurgeons > are pretty > scarce, so we are always looking for a good one out > of state at this > point. My family and I will say a prayer for your > daughter and your > family. > > Take Care, BarbR > > > > > > Hello Everyone, > > Our hospital stay is over, and hopefully she will > be > > home for a long time now!!!! But, what they did > find > > was a stable csf leak. Does/did anyone have this, > and > > if so what did they do?? > > Thanks, > > Tommi > > 's (13), Mom Chicago IL. > > > > Tommi > > 's Mom > > Chicago, IL. USA > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Debbie, had a pseudomengicele before, so this is not new to us, however we then also waited about 2 1/2 months before they repaired it. I don't know what the diffrence is this time, except it has not reached skin level yet. She now lies flat all the time, and has to wear the wonderful binder all the time also. She also is a pill that has both actominphine, and cafeine. She is absolutely miserable, but when I asked when I should be worried they said " a reasonable amount of time " , so I guess I will e-mail him tomorrow and ask what a " reasonable amount of time is " !! Thanks!! Tommi --- debbie@... wrote: > Hi Tommi, > > Just wanted to give you my experience with my own > CSF leak. Mine > happened after detethering #2 when the sutures from > my duraplasty > broke. It was pretty apparent what was happening > because the spinal > headaches were torturous and I had a massive, > spongy, internal > pseudomenigocele under my incision. > > My neurosurgeon said he didn't want to reoperate to > close it despite my > pleas because " most CSF leaks close up on their > own. " Perhaps so, but > certainly not mine. My leak went on for two years > and caused me > numerous problems before I FINALLY prevailed and got > him to operate to > close it. The leak caused me spinal headaches almost > every day, I had > two trips to the ER as a result of it (one of which > involved a spinal > tap for meningitis), and the formation of tons of > pseudomeningoceles of > spinal fluid, which, I believe, caused me to > retether. The > pseudomeningoceles eventually grew so numerous that > they crowded the > space around my spinal column and forced the dura > into the spinal cord > (I've seen the MRI first hand and have seen that I'm > retethered exactly > where the mass of pseudomeningoceles was.) > > I'm glad your hospital stay is done, but I'm so > sorry to hear about > this complication with . If they're refusing > to deal with her > leak now and are hoping it will close up on its own, > ask what their > timeline is for that. For example, if it's not > closed on its own in > three months, will they look at intervening in the > new year with > perhaps a blood patch procedure? If that doesn't > work, will they > consider surgery? (IF that's what and you > want.) > > After I learned a blood patch was not possible in my > case, I was > desperate for them to close mine surgically. Mine > just went on and on > and on and never seemed to get better. Since they > closed my leak > surgically in January of this year...no problems and > no spinal > headaches. > > Is having headaches at the moment? If so, it > helps to lie flat > on her back. Drinking something with caffeine also > helps. This > increases the CSF in the brain. > > Best of luck. Please keep us posted, > Debbie > > 2a. Stable CSF Leak > Posted by: " tommi " tommigrl1@... tommigrl1 > Date: Fri Sep 8, 2006 6:04 pm (PDT) > > Hello Everyone, Our hospital stay is over, and > hopefully she will be > home for a long time now!!!! But, what they did find > was a stable csf leak. Does/did anyone have this, > and > if so what did they do?? > Thanks, Tommi > 's (13), Mom Chicago IL. > > Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Barb, I am sorry to hear you had problems with the school, we are truly blessed with a great school district who will provide anything she needs including a tutor at home. But, the doc did prescribe a caffiene medicine it also has acteminophine. It doesn't really seem to work, but they did tell her to drink a lot of fluids. It is so hard to force her to drink ) She is lying flat a lot, almost always!! If the wonderful school district we live in would provide a bed for her in class it would all be good!!! Thanks, Tommi --- brbrrss wrote: > -HI Tommi, > > I,m sorry to hear that your girl is still having > those darn > headaches! I know that when Robby had the leak they > were > encouraging him to drink caffiene ( coke,pepsi, MT. > dew, his drinks > of choice)as it helped to replenish the spinal > fluid. Lying flat > also seemed to help him. Rob is starting the 7th > grade, and I > homeschool him and my other boy who is 10. It works > for us because > he was missing so much school, and middle school was > not very > accomodating with his health situation. > > Take care, BarbR > > -- In tetheredspinalcord , " brbrrss " > > wrote: > > > > Tommi, > > > > > > Rob had his first surgery when he was 5, then 2 > more a year later. > > One to untether, and one to repair CSF leak. > > > > BarbR > > > > > > > > > > > > > > Hello Everyone, > > > > > Our hospital stay is over, and hopefully she > will > > > > be > > > > > home for a long time now!!!! But, what they > did > > > > find > > > > > was a stable csf leak. Does/did anyone have > this, > > > > and > > > > > if so what did they do?? > > > > > Thanks, > > > > > Tommi > > > > > 's (13), Mom Chicago IL. > > > > > > > > > > Tommi > > > > > 's Mom > > > > > Chicago, IL. USA > > > > > > > > > > > __________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
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