I am a new member. In 1999 my sister had surgery to insert a shunt for her Chiari 1. Early 2013, she was diagnosed with recurrent Chiari, cervical stenosis with syringomyelia and syringobulbia. She had surgery early March - shunt inserted and laminectomy with fusion and instrumentation. Three weeks later, she was leaking more spinal fluid. Another surgery was performed - a third shunt inserted. She has been in the hospital since her March surgery. She developed pneumonia and paralysis. Currently she in a rehab hospital and making good progress. Three weeks ago a new bulge formed on her upper back. MRI shows she is leaking fluid again. The surgeon has recommended another surgery.
Is it common for someone with Chiari to keep leaking spinal fluid?
Has anyone else had anything similar to what my sister is going through?
I look forward to hearing from anyone. I am so thankful for this support website.
I am so very sorry your sister has had such a hard time. I have an involved neurological history. but I don't have any personal Shunt experience. It is not common to have multiple CSF Leaks but possible. Can you send me a private message and tell me who her NS is please? If they are recommending surgery she really doesn't have a choice. It has to be repaired and stopped. No one wants infection setting in. CSF generates at a rate of 3 cc's a minute. Hopefully this will be her last surgery. Where does the MRI show she is leaking fluid from? I hope you will get many responses on your discussion. I will research anything you need or help you in any way possible. I know some incredible NS in your State. I hope she is seeing one of them or that her NS is just as wonderful. At times it's hard to hold onto hope and patience when someone we love is suffering. Please know everyone here understands that. I will keep you all in my prayers. Abby has given you some great medical information. If you have any additional questions or need anything please let us know, we can reach out to Medical Specialists for additional clarification. How is your sister's spirits? How is she handling this all? I have been very ill for stretches of time and know that is very hard. I hope your sister and you and your family have a great support system. Know you also have us. Even if you just want to vent. Please know we are here.
Good evening LJ,
I am sorry to hear of your sister’s CSF issues. I had a surgery to treat aqueductal stenosis of the brain about year ago, which was an alternative to a shunt, called an Endoscopic Third Ventriculostomy (ETV). Although I had never had a mechanical shunt placement, my doc did mention that he does the ETV sometimes when shunts continually fail. This may not be an option for your sister, or even ineffective in her scenario or in CSF leaks, just wanted to mention the ETV to you.
Best of luck!
Hello my name is cynthia and are you sure your not talking about me ? i was suppose to have surgery last august the same as her march surgery,I have had 2 shunt surgeries and decompression surgery i was to scared to have yet another one and i never thought that the tonsils in my brain but they are falling. i never know what to expect from my body.i understand but have no idea what to tell you but be there for her even when she is cranky believe me all the pain and symptoms can realy get to a person.she is lucky to have you .Hang in there and have faith for you both cuz i would bet you she losses it regularly.