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.
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.
My son John now has a VP shunt placed on 12/1/06. They left the LP shunt in place because they felt it wasn't working. Is there any chance that the LP will still work if it wasn't broken completely? They said if headaches come back he would be put on medication to control the headaches. I am concerned because with all the other doctors we have had if the headaches came back they would put in a different shunt. John usually has a normal life headache free when the shunt is working. John last spinal tap he had headaches when the pressure was even at 21. The spinal tap before that was 31. They felt he sould not have headaches at 21, and thought he might need a shunt and Lasix. The valve is a mid-range pressure with antisiphoning. Do you have any suggestions?
My daughter is now 5 and was diagnosed with pseudotumor cerebri at age 3. I have her at Cleveland Clinci now and she goes next week for her 6th spinal tap. Her pressures have been between 41 and 55. She was put on the max amt. of diamox in september which was a 1000 a day, now that she is having so many side affects with the diamox, they lowered it to 775 a day, It's looking like we'll be discussing the shunt, but I don't know if that's the thing to do yet? Please help with any ideas or any directions to go.
Looking back on all the shunts I would not change a thing. It is scary at first, this is your child, and let me tell you last week was no different. He had his first VP shunt put in on 12/1/06. His first LP shunt was 5/2/99, 9/99 and a few more after that. But the times we have when the shunt is working is wonderful, he is headache free!
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.
Thank you for your reply. We go to Cleveland on 12-14-06 for her 6th tap and then talk to the Neurologist afterwards to discuss everything. I've been doing alot of researching on the pseudotumor cerebri, and mostly all of the children with this have something else wrong with them, so it makes me wonder if something else is going on with Haley they just haven't found yet. And some children have had only one tap and they're fine or been on the Diamox for 3-4 mths. at 200-250 mg a day. Haley is at 775 a day and on her 6th tap. Just doesn't make any since to me.
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