My 37 year old daughter has been diagnosed with pseudotumor cerebri in late 2007, after a hospitalization for a bad headache and vomiting for 9 days. That was diagnosed as "meningitis". She was told it was viral and she could go home, as there was nothing they could do. it had to run its course. Over the next year and a half, she saw various physicians, neurologists, neurosurgeons, etc. and was finally diagnosed with Pseudotumor cerebri. Apparently it is not well know, most docs don't know much about it. She had a VP shunt put in on July 9th. She woke up without a headache, and we all celebrated that she was well. She recovered from the surgical pain, only to begin to have the pressure pain in her head again. On August 24th, she again had a VP shunt placed, the old one was removed. The neurosurgeon told us that it had malfunctioned, and it was very unusual. This is now Mayo Clinic that we are dealing with, supposedly the best in the business. Today is September 2. My daughter just called me to say that she was on the way to the ER, apparently the second shunt is malfunctioning!!! They adjusted it in the ER and sent her home. They said she should see some relief in about 2 days. She does have an appointment with her neurosurgeon in two days, so that will be covered. My question is this.... Why is this happening? all of the research I did stated that a VP shunt should last 5 to 10 years, maybe a lifetime. So far her two shunts have each lasted 9 days before malfunctioning. The doc said she is not doing anything to cause this. Has anybody else had a similar experience with a shunt? My daughter is becoming increasingly depressed, despite being on an antidepressant, being sick so long, and now not staying healthy for long.
I have been checking every day but have not had a response. Has anyone out there had a family member or yourself had multiple shunts placed for pseudotumor? Docs? have you had a patient with this postop course? My daughter is not obese, so she does not fit the picture for the typical pseudotumor patient. Can anybody give me any advise or encouragement? nanur1
Hi...I am so sorry ur DD is going thru so much.....
Unfortunately shunts do tend to malfunction and get clogged.......
Do u know if she has ne other related conditions?...Syringomyelia, chiari......Ehlers-Danlos, tethered cord?
Puesdotumor cerebri can target thin or regular builds......
U may want to try the Autonomic Dysfunction forum and or the chiari malformation forum here on MedHelp......we have members with this condition that may be able to share their experiences with u and ur DD.
Pseudotumour cerebri may occur in non obese persons as well. A ventriculoperitoneal shunt may malfunction and need to be replaced. The condition may recur if the pressure within the brain increases again and again. This may occur a number of times. The shunt gets obstructed. Disconnections in the system accounts for few of the malfunctions. The more distal the connection was from the ventricle, the higher the likelihood of disconnection. Furthermore, occipitally placed shunts had a significantly higher tendency to dislocate than frontally placed shunts. A new theory states that increased intra-abdominal pressure has been reported to constitute an infrequent cause of ventriculoperitoneal (VP) shunt malfunction. Please check if your daughter has some abdominal symptoms. Hope this helps you. Take care and regards!
I am also dealing with Same issue.It seems I have been in hospital or er more then home.I just went into er 4 weeks ago and they did a cat scan and I had a brain bleed. And they done emergency transfer to another hospital. My neurosurgeon had a lp done and It was 45.Does anyone know if a high LP can give you a brain bleed.
Hi I am a PTC patient going threw a lot of the same things that your daughter is going threw. I am not over weight either but I had a sever trauma to the head. (Ex husband) I have experienced blindness and sever headaches since 2006. I have had 16 lumbar punctures and finally got an lp shunt placed on June 23, 2010. It was working great then it started leaking from the sight on my spine and I had a large collection of fluid on my spine. On July 23, 2010 I had my first revision because the regulator quit working. I had the surgery and was feeling better. I even went back to work. 3 months later I started to get pressure headaches again. I have since had to go on disablity and I am blind completely in my right eye. I had another revision and they trimmed the tube that drains into the abdomin. I'm still having sever headaches and I'm noticing vision changes in my left eye now. I'm very affraid one day soon I will be completely blind. I can also sympathize with the depression. I am just sick of being sick! With all the medical technology out there you would think they could help us! Thanks for listening and I hope all is well.
I saw the neurologist on last Monday, 8 days ago. He says he believes I have pseudotumor cerebri and sent me for an MRI, which was done yesterday. My follow up appointment isn't until March 4th. The headaches are getting worse and more often. Is there anything I can
do to get some relief and function until then? I have 2 kids that need my attention and I can't hardly lift up my head.
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