Author Topic: post radiation hydrocephalus  (Read 4396 times)

flier58

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post radiation hydrocephalus
« on: October 07, 2010, 06:30:14 am »
Did anybody have an experience with hydrocephalus after radio???   I had CK in Nov 2006.  Summer of 2010 was tough on me ... Finally did my MRI and it shows hydrocephalus.  I feel like I'm dying after reading the info on web.  I am 52 yo woman and have a very bright and inquisitive 7yo boy.  MY deficiencies are still manageable.  It seems to be progressive disability.  Any advice?
Flier58 

jerseygirl

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Re: post radiation hydrocephalus
« Reply #1 on: October 07, 2010, 10:11:33 am »
Hi,

To my knowledge, hydrocephalus of any kind for any reason is handled by a shunt or (I know you don't want to hear it) tumor removal. Shunts can be different: lumbar-peritoneal (LP) or ventricular-peritoneal (VP). It is a short surgery, no big deal. I had post-surgical hydrocephalus when CSF was not draining properly, so they implanted a shunt to help CSF drain better and prevent its build-up in the brain which otherwise is called hydrocephalus.

Another way they can go is to surgically remove the tumor which is obstructing CSF drainage. I heard of both scenarios happen (shunt post radiation and surgery post radiation) but only your  doctors can judge what is better.

The danger of untreated hydrocephalus is long-term brain damage and I mean the real one, with memory and other cognitive and movement issues. As CSF builds in the brain (hydrocepahlus exists or progresses), it compresses ALL brain, including cerebrum, which is usually not involved in AN and thus creates issues that AN usually does not  cause.

Hydrocephalus can cause excruciating headaches and they usually motivate the patient (and the doctor) to seek treatment, however, if there are no headaches, it  can go untreated with long-term consequences  as the result. Regardless of your symptoms, if I were you, I would insist on treatment ASAP. After all, this is your head and your life.

                           Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Lizard

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Re: post radiation hydrocephalus
« Reply #2 on: October 07, 2010, 10:16:14 am »
I'm sorry to hear about your post AN treatment issues.  Hopefully if you get the shunt you will begin to improve.  Try to stay positive, I knows its hard, but your son will help you through. 
hang in there,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Anomar11

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Re: post radiation hydrocephalus
« Reply #3 on: October 09, 2010, 07:30:35 am »
Flier,

What does Dr. Chang say?  I also had CK with him 11/08.  You're in my prayers.  Hold the faith that this can and will be resolved.

Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9