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Neurology (Expert Forum)
pseudo tumor cerebri? opening pressure 31. LP shunt
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
pseudo tumor cerebri? opening pressure 31. LP shunt
by jwebs, Nov 18, 2006 12:00AM
My son was diagnosed with PTC in '99 and an LP shunt was placed. He has had at least 4 shunt replacements. The last was done with a Codman programable LP in '02. He has suffered from little headaches until now. I felt the shunt was not working because he gets little relief from the head/neck ache when he lays down. Before this always took care of all the problems. We were in the ER last week and they did a head CT and an ab xray. the shunt is in one piece and they said the cerebral fluid and ventricles look fine. We then went to an optomotrist who dilated his eyes and said he had the start of papilledema and went directly to the ER. They saw the papilledema too and sent him home on Diamox. The next day he had trouble walking from pain in both knees and tingling in mouth and nose. Neuro. said he had chronic daily headaches. That day we went into the neurologist he took him off of diamox and set up an appt with ophthalmologist and he said he didn't have papiledema and no PTC.He had a spinal tap the next day with opening pressure at 31. Back to neuro. he has an appt. 11-21-06 with neurosurgeon to adjust setting or replace shunt. I am concerned with chiari but they assure me this is not. But with neck pain for hours on end twice a day and he trips sometimes when he walks or runs. They say they don't see it on the CT. No MRI has been done. Any info you can give would be wonderful. Or questions or test to be run would be helpful.
Doctor's Answer
by CCF-Neuro-M.D.-SH, Dec 07, 2006 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The problem you describe is complex and an often confusing one. Pseudo-tumor cerebri (Benign incranial hypertension) causes an elevated intracranial pressure with resulting headaches, possible visual loss, and possible hydrocephalus (causes large ventricles). The cause of this condition is not known, but is thought to be related to decreased absorption of CSF back into the blood, and has been associated with venous clots in some cases. Treatments for this condition include medications that inhibit carbonic anhydrase (diamox, topamax), repeated lumbar punctures and CSF shunts. Optic fenestrations are also done to prevent visual complications in some patients. The problems that many people report are that headaches continue despite shunting, and that shunts have frequent complications. The symptoms you described of tingling in the mouth and nose etc are frequent side effects of diamox. I would recommend that you start a weaker carbonic anhydrase inhibitor, Topamax. This medication is also good for primary headache prevention. I would also recommend an MRI of the brain with CINE flow study (measures CSF flow). MRI is more sensitive and can pick up changes related to possible hydrocephalus and/or chiari.
I hope this has been helpful.
The problem you describe is complex and an often confusing one. Pseudo-tumor cerebri (Benign incranial hypertension) causes an elevated intracranial pressure with resulting headaches, possible visual loss, and possible hydrocephalus (causes large ventricles). The cause of this condition is not known, but is thought to be related to decreased absorption of CSF back into the blood, and has been associated with venous clots in some cases. Treatments for this condition include medications that inhibit carbonic anhydrase (diamox, topamax), repeated lumbar punctures and CSF shunts. Optic fenestrations are also done to prevent visual complications in some patients. The problems that many people report are that headaches continue despite shunting, and that shunts have frequent complications. The symptoms you described of tingling in the mouth and nose etc are frequent side effects of diamox. I would recommend that you start a weaker carbonic anhydrase inhibitor, Topamax. This medication is also good for primary headache prevention. I would also recommend an MRI of the brain with CINE flow study (measures CSF flow). MRI is more sensitive and can pick up changes related to possible hydrocephalus and/or chiari.
I hope this has been helpful.
Thank you!
You might want to go to www.pseudotumorcerebri.com. I found this website not to long ago. I wish I had known about it 1999 when we were first diagnosed.
Good luck to you and your family!