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!
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?
Prayers for both of you,
Adventurer53
Yes, she had about 3 blood patches before placing the shunt. They did not work at all. We go in to today for a MRI and to speak with the doctor again. Thanks you for your advice!
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.
Hi...I also have tethered cord, but have not had surgery yet...but I also have chiari and had that surgery...may I ask, was ur DD checked for chiari?
Did they try a blood patch?....
And was her dr a chiari specialist?.....have u tried getting a 2nd opinion?
I am so sorry that ur DD is having to deal with all this...we do have a chiari forum here on MedHelp and those with TC will be found there.
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc
"selma"