Does anyone have experience with hydrocephalus?

[jimssister]

My brother, Jim, has GBMIV and had surgery on Dec. 30, 2008. He went through 6 weeks of radiation and temodar and then 5 days of 400mg temodar. He has not been able to work since the diagnosis. Two weeks ago a large blood clot was discovered in his leg and he was put on a blood thinner. A week later he had a terrible fall head first down a flight of stairs. Today the MRI results came in. No new tumor growth, it hasn't gotten smaller, and he has water on the brain, hydrocephalus. He is almost paralyzed on the right side now, cannot feed himself or walk, he cannot communicate and is "out of it".

Has anyone had this complication? It is so worrisome.

Thanks!

[brainman]

Hi Stacie. I am so sorry about your brother's GBMIV. GBMIVs are monsters. The effect they have on an individual depends on its specific size and location. Even after surgery, radiation, and chemo the damage is already done. Most individuals never fully recover. In fact, most individuals have significant losses.

My mother had a GBMIV. She opted for no treatments. She died just 2 months after her official diagnosis.

I had/have a lower grade glioma. I did have all forms of treatment... surgery, radiation, and chemo. Yet, I still have speech problems, weakness in my right arm, and have to take anti-seizure meds.

Falling is not at all unusual. Both my mother and myself fell. It is not that unexpected since one side of the body is weaker than the other.

Hydroencephaly while not common is also not unheard of. Most people with a primary brain cancer have swelling of the brain tissue. That is not that different from hydroencephaly... both are caused by accumulation of fluid.

You and your brother are in my thoughts and prayers.

[jimssister]

Thank you, Jim. I'm glad to connect with this group of caring people.

This kind of tumor, GBMIV, is a monster, as you say. Do you know the cause of brain swelling? My brother's tumor is not growing and he's been taking steroids for a while now. And do you know the likelihood of recovery from the hydroencephalitis? A shunt has been discussed but tripling the steroids is the treatment for now. We'll learn more on Monday when Jim's onc contacts the neurosurgeon and the n-onc at Dana Farber.

I will post Jim's story soon.

Stacie

[brainman]

Stacie, the swelling is like a bruise. Like any other tissue, the brain can swell when injured. I am not sure what can case just swelling in most people but hydroencephaly in some. Yes, they will try to resolve the problem first with steroids and if that does not work, they can add a shunt to drain off the fluid. The shunt may or may not be removed at some point... depending if the fluid keeps draining.

[jimssister]

Thank you, Jim. So many things to learn about with this disease! My brother, Jim, started the high dosage of steroids on Friday and my sister-in-law said yesterday that Jim was able to put together a complete sentence and sit on the couch yesterday. It's working!

It seems a shunt may not be possible given the location of the fluid. The oncologist is checking this out with other docs (Jim's neuro and the n-onc at Dana Farber). In any case, the recent improvement is a good step and hopefully will continue.

It looks like Jim will start Avastin tomorrow.

I appreciate your answers so much. All the best to you.

[brainman]

Just a little information about Avastin. Avastin is a frontline treatment for several other types of cancer. Only recently have oncologists started using it for treatment of GBMs. It is still sort of like in an experimental stage. So far, the results look good.

It is usually used in conjunction with Temodar.

[hydrogurl123]

having a relative with hydrocephalus is really painful seeing your love one suffering from this disease,, hydro most likely other diseases is not easy to deal with and patients suffering from this are experiencing a lot of pain