pseudo tumor cerebri/ chiari/ LP shunt

[jwebs]

I wanted to add after reading some of the other forums. My son is not over weight and when diagnosed with PTC in '99 was very thin. He was getting over a terrible viral infection and was hospitalized with IV antibiotics '99. His vision had become crossed and blurring occured and only after seeing several doctors: peds, neurologist, optomotrist, ER each saying he was fine and sent home with an eye patch/glasses/and wait and see approach. This did not sit well with me so I did alot of searching and had his eyes dilated for a second time in which they saw the increased pressure on his optical nerve and at that point he could go blind at any minute I was told. We rushed him to the ER were they gave him a spinal tap and the pressure shot over and onto the floor. So this is why I am concerned about still finding the next step to take and that I will not miss anything. And I so want to rule out the chiari. Even though they feel he does not have it on the CT. Thank you for you time.

[CCF-Neuro-M.D.-SH]

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.
   As mentioned in the previous post, some PTC is caused by decreased reabsorption of CSF (sometimes viral/bacterial infection can clog and scar arachnoid granulations- the site where CSF returns to the blood) or venous clots. The MRI with CINE flow study will help assess this, and I would also add an MRV (magnetic resonance veno-gram) to assess for venous clots.  Your son should also have formal visual fields tests to look for scotomas (blind spots), that can be caused by papiledema.  If blind spots are found, he may require a surgery called optic nerve fenestration to prevent further visual loss.
I hope this has been helpful.

[jwebs]

The neurosurgeon tried to adjust the valve on my son two times but the setting doesn't change.  Do you need to get the valve in the exact place? Will an inch off change the setting? He feels the valve is broken and wants to leave the LP shunt in place and put in an VP shunt when his head/neck pain return. He has had relief from this neck/head pain since the spinal tap last week.

[nanceet]

Be careful with chiari.  This is not a cure either.  I have been decompressed for Chiari.  You can go on the website and read about this.  There are pros and cons regarding this.  Of course, it is better at a young age, but chiari is a strange conditiion... along with pseudo tumor cerebri.  I also am not overweight and have high pressures. This is not an exact science. Good luck!
Nancee