Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Hi. I am 37 years old. I have spina bifida and of course along with a tethered spinal cord. I had surgery as a newborn and again in 2001. I had a mri done about 3 months ago which i seen to show an excessive amount of spinal fluid in my lower back surrounding my spinal cord. the neurologist at the pain center said it was nothing to worry about so I didn't contact my usual neurosurgeon. this weekend i took a fall off my porch and had to have my back xrayed. the doctor asked if they had any sort of drain in me to drain out the spinal fluid. He said that the leak was pretty bad so apparently in the last 3 months it has gotten worse. i know i have had splitting headaches. like i said no back surgery since 2001 and i had a lumbar spine puncture for possible ms but that has been over a year ago. i will call my regular nsg tommorow, but what would cause this? and what can me done for it? any answers would be appreciated. I also have a ileostomy and the barium has stuck itself to my colon. they called last night saying that i had a very excessive amount of barium on my colon and they stressed excessive amount. i am falling apart here. any help is appreciated. Sara Neal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2011 Report Share Posted February 22, 2011 Hi Sara, Welcome to the group So sorry to hear you are having problems. Not sure what would cause the leak but I guess the LP could have either not healed or caused a weak spot that spontaneously opened. Or...sometimes people just spontaneously pop even without a history of an LP. Either way, I am surprised you havent experienced some neuro decline with that much fluid around your cord....ummm what made you fall? As for what can be done they will probably do a blood patch to try to repair it, maybe do some needle aspiration for the fluid. Those headaches are killer! I had a leak after my surgery and that was the worst part of it all lol. As for the barium...they really need to get that out of there! I am not sure what can be done...because I know that stuff solidifies. I hope it doesnt require surgery I would think that it could lead to a bowel obstruction if they dont address it though. How long ago did you have barium?? Im so sorry for all the challenges you are going through right now but we are here for you. Blessings, Subject: barium and colon To: tetheredspinalcord Date: Sunday, February 20, 2011, 8:36 PM  Hi. I am 37 years old. I have spina bifida and of course along with a tethered spinal cord. I had surgery as a newborn and again in 2001. I had a mri done about 3 months ago which i seen to show an excessive amount of spinal fluid in my lower back surrounding my spinal cord. the neurologist at the pain center said it was nothing to worry about so I didn't contact my usual neurosurgeon. this weekend i took a fall off my porch and had to have my back xrayed. the doctor asked if they had any sort of drain in me to drain out the spinal fluid. He said that the leak was pretty bad so apparently in the last 3 months it has gotten worse. i know i have had splitting headaches. like i said no back surgery since 2001 and i had a lumbar spine puncture for possible ms but that has been over a year ago. i will call my regular nsg tommorow, but what would cause this? and what can me done for it? any answers would be appreciated. I also have a ileostomy and the barium has stuck itself to my colon. they called last night saying that i had a very excessive amount of barium on my colon and they stressed excessive amount. i am falling apart here. any help is appreciated. Sara Neal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2011 Report Share Posted February 22, 2011 Sara, I'm sorry too! I'd try some intense probiotics, like Primal Defense, for your colon problem. You can probably get it at the drug store, or a GNC, or somewhere like that. I hope everything works out well for you! Holly ________________________________ To: tetheredspinalcord Sent: Sun, February 20, 2011 9:36:07 PM Subject: barium and colon Hi. I am 37 years old. I have spina bifida and of course along with a tethered spinal cord. I had surgery as a newborn and again in 2001. I had a mri done about 3 months ago which i seen to show an excessive amount of spinal fluid in my lower back surrounding my spinal cord. the neurologist at the pain center said it was nothing to worry about so I didn't contact my usual neurosurgeon. this weekend i took a fall off my porch and had to have my back xrayed. the doctor asked if they had any sort of drain in me to drain out the spinal fluid. He said that the leak was pretty bad so apparently in the last 3 months it has gotten worse. i know i have had splitting headaches. like i said no back surgery since 2001 and i had a lumbar spine puncture for possible ms but that has been over a year ago. i will call my regular nsg tommorow, but what would cause this? and what can me done for it? any answers would be appreciated. I also have a ileostomy and the barium has stuck itself to my colon. they called last night saying that i had a very excessive amount of barium on my colon and they stressed excessive amount. i am falling apart here. any help is appreciated. Sara Neal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2011 Report Share Posted April 15, 2011 Sara, I am curious about an update. What was the cause of the spinal fluid build-up? Has it resolved? Will it have to be sugerically corrected? I am 39 and had detethering surgery six months ago. I just had a mri for the post surgerical follow-up. There is a significant amount of fluid in my low-back. I won't have an opportunity to talk to my doctor for a couple of weeks. But it does explain why I am still so numb and still have significant pain. I knew that surgery wasn't going to correct everything, but did indeed expect better results. thanks, Carol > > > > Subject: barium and colon > To: tetheredspinalcord > Date: Sunday, February 20, 2011, 8:36 PM > > > Â > > > > Hi. I am 37 years old. I have spina bifida and of course along with a tethered spinal cord. I had surgery as a newborn and again in 2001. I had a mri done about 3 months ago which i seen to show an excessive amount of spinal fluid in my lower back surrounding my spinal cord. the neurologist at the pain center said it was nothing to worry about so I didn't contact my usual neurosurgeon. this weekend i took a fall off my porch and had to have my back xrayed. the doctor asked if they had any sort of drain in me to drain out the spinal fluid. He said that the leak was pretty bad so apparently in the last 3 months it has gotten worse. i know i have had splitting headaches. like i said no back surgery since 2001 and i had a lumbar spine puncture for possible ms but that has been over a year ago. i will call my regular nsg tommorow, but what would cause this? and what can me done for it? any answers would be appreciated. I also have a ileostomy and the barium > has stuck itself to my colon. they called last night saying that i had a very excessive amount of barium on my colon and they stressed excessive amount. i am falling apart here. any help is appreciated. > > Sara Neal > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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