I have a 17 year old daughter that was born with a tethered spinal cord. She had her first surgery at age 5 to untether it. 3 years ago she had to have it done again, this time though she will not stop leaking spinal fluid. She has had 8 surgeries in the past few years and everytime her lower back collects a huge amount of spinal fluid. Finally last January the doctor decided to place a shunt in her back that drains into her stomach. She did okay for about a year- still had awful spinal headaches and some fluid was still visible. Then last month all of sudden the fluid really began building up. We took her in and they did surgery again to find out what was going on. The shunt was in place and working, but she was leaking around where the shunt was inserted. After 3 weeks of having to lay flat it seemed like it had worked. once she got up and started moving around the fluid started accumulating again. I don't know what to do! The doctor requested and MRI for this week on her brain to see if she might be producing too much spinal fluid. She does not think that's the problem but wants to start thinking outside the box. The doctor has ran out of ideas and I don't know what is going to happen next. If anyone has had this problem or knows someone that has- please let me know what they did to fix it. I feel so helpless and frustrated, I want my daughter back to having the normal healthy life she was living before that surgery 3 years ago.
Hi there. I empathise with you completely for all that you are going through. since there is continuous CSF leak from the back, this needs to be investigated. Why should the CSF be leaking from the back despite the shunt. Is there a possibility of sealing the point of leak and dural tear with an epidural blood patch under fluoroscopic guidance? Check up with your neurologist, along with taking a second opinion from another neurologist. Strict asepsis needs to be observed since handling with CSF may cause meningitis and further aggravate the scenario. Take care.
Oh, Marie, I feel for both you and your daughter. I have had a tethered spinal cord from birth. I had it untethered once, a tumor taken out from inside the cord once, two fusions and a spinal cord stimulator implanted. I presently am doctoring for a CFS leak at L4-L5 - I'm four days out of a blood patch that is working!! I have had them work before and then blow a hole, so I will be taking it real easy for two weeks. If I can be of any help or a listening ear, let me know. Both of my sons had medical issues growing up and as a Mom your heart and soul ache for them and yet we try to be strong for them.Please let us know how the appointment goes. I also wonder if you are comfortable with your specialist and how many of these has he or she handled?
Jessica had her MRI today- turns out she has Chiari 1 malformation. This could be why the fluid is collecting in her back instead of circulating like it should. We are excited and nervous to have the surgery done which will be March 14th. After talking to the doctor it makes sense that this is why she has had these awful headaches and why the fluid is collecting in her back. I really hope this works--I will send a post as soon as we know if the surgery was successful!
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