FSR Problems

[sklugler]

In 2001, I was diagnosed only with an acoustic neuroma.  The only treatment I had was 10 days of FSR at Johns Hopkins.  Now, I am experiencing Hydrocephalus and cysts.  Please help me understand my options.

[ppearl214]

Hi and welcome.

Based on the little info you shared, let me ask you this.... when was the FSR done? How long ago?  When was your last head MRI with contrast? What was found at that point?

Can you elaborate a little more so we can help with potential answers?

Hang in there!
Phyl

[leapyrtwins]

As the vast majority of us on the Forum aren't doctors - and those that are doctors, don't treat ANs - I think your best bet would be to discuss your options with an MD who treats ANs.

I think I'd start with the doc who did the FSR.

Just my thoughts,

Jan

[sklugler]

I had FSR in 2002 at Johns Hopkins for a total of 10 days.  I had annual MRI's.  Johns Hopkins only responded that the acoustic neuroma did not grow.  I now have major problems like hydrocephalus and cysts growing.  My local doctors believe that JH used too much radiation.  Any insight would be appreciated.  I am a statistic that is not good.  I have had major challenges.  Unfortunately, the late Dr. Williams did the FSR at Johns Hopkins.  I do not have the same insurance.

[sgerrard]

I'm not sure what options you are looking for, but if I were you, I would focus on getting medical attention for the hydrocephalus and cysts, not wondering what may have caused them.

The facts are that a fair number of people who have never had an AN or FSR treatment get hydrocephalus or cysts, and a fair number of people who have had an AN and FSR treatment do not have those conditions. While it is easy to think that they may have been caused by the FSR, it is almost impossible to say that they definitely were. I'm not sure what it would get you anyway. I see no use in dwelling on it.

I think hydrocephalus is usually treated with a shunt to drain excess fluid and reduce the pressure. They sometimes do surgery on cysts, depending on where they are and what problems they are causing. I would go to a neurologist or neurosurgeon and get the conditions evaluated and treated as needed.

Best wishes and I hope you are able to move forward.

Steve

[sues1953]

Wow Steve what level headed advice, you just forgot the "Take a deep Breath".

It's so human nature to want to blame, or find reason for what ails us.  I tend to blame every little woe on my newly diagnosed AN.  What will I say when the bugger is gone?

Good luck to you Sluger, keep us posted.

Sue

[sklugler]

Back in 2002, I was so high with FSR at Johns Hopkins.  I even left a very stable job to teach and write.  Now, my symptoms have gotten worse.  I should have done more research on the complications with FSR  as well as really have a neurosurgeon looking at all my MRI's  Johns Hopkins had reported that the AN remained in size, but never tolld me the patient about the other complications.  Now, I am dealing with hydrocephalus, cysts, CSF etc

Stuart 

[Jim Scott]

Stuart ~

I'm truly sorry to learn of your recent problems; cysts &, hydrocephalus.  I can understand your frustration and angst but your primary goal at this time should be seeking relief for the medical conditions afflicting you and causing a deterioration of your quality of life.  Your 3 separate posts on this thread basically stating the same thing - your frustration with the FSR treatments that you seem to be convinced are causing your problems - are an indication that you are determined to blame your FSR treatments for your current medical issues.  That may or may not be true but at this point in time, treating the cysts and hydrocephalus are more important than placing blame, which wouldn't solve anything because the correlation between your FSR treatments performed five years ago and your current medical problems can very likely not be proven to a medical certainty.  Please seek medical help for your cysts and hydrocephalus.

Jim