Hydrocephalus

[mizsuzsi]

Hi All,

I am visiting this site from Hungary,  Budapest, I am glad to see that a special association exists for AN patients.
I have an AN diagnosed in 2008, got a gamma knife treatment, so far the tumor size has not increased.
Few days ago hydrocephalus was found with papilla. I was suggested to implement a shunt (magnetic).
I was also told that the hydrocephalus is caused by a certain protein that is produced by the existence of the tumor, and very few patients suffer from such a consequence.
I would like to have two questions: do you have any experience about this certain protein, and how it can be cured other than the use of a shunt?
Do you have any experience about the use of magnetic shunt? Any effects to the shunt in magnetic areas (e.g. telephone, other).

Thanks for any of your comments,
mizsuzsi

[mk]

Hi,

welcome to the forum, although I am sorry you are having troubles post-GK. Indeed hydrocephalus caused by a protein released by the AN is a rare complication of radiation treatment. As far as I know a shunt is the only way to relieve the pressure (other than surgery).
I am not familiar with magnetic shunts - a few people on the forum have a shunt and may chime in (or you could do a quick search).  Hearing the term "magnetic" it immediately makes me think about problems with MRI scans. You should ask if this type of shunt interferes with MRI machines.

Good luck and let us know how it goes.
Marianna
 

[mizsuzsi]

Hi Marianna,

Thank you for your reply, its much appreciated. Indeed MRI will have an effect on such a magnetic shunt, but it can be immediately re-set by the physician dealing with the MRI. I have rather concerns in respect of everyday devices (mobile, hairdresser, microwave oven) how they impact the shunt. I was told that even in such a case the change in the functioning of the shunt can only be felt after few days - just would like to see others' experience.

Thank you again and take care,
mizsuzsi

[It is what it is]

I too am sorry to hear about this complication and hope others respond with their experiences.  My thoughts are with you.

Karen