Pineal body tumor - physician says "ask no questions"

    
      Re: Pineal body tumor - physician says 'ask no questions'
    


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Posted by CCF NEUROSURGERY MD on September 18, 1997 at 12:19:08:

In Reply to: Pineal body tumor - physician says "ask no questions" posted by Debbie on September 14, 1997 at 16:02:10:

: My brother was dx. with Pineal body tumor approx. 3 mo. ago.  Symptoms
  were severe headache, nausea.  He was taken to Loma Linda University Hospital
  where sx was performed and a shunt placed.  The pathology report stated
  germinoma.  He then underwent proton beam radiotherapy.
  COmpleted about 3 weeks ago
   Prior to
  radiotherapy he was prescribed 16 mg decadron per day.  During radiotherapy
  the decadron was reduced to 1 mg per day over a period of one week.
  .  He developed severe muscle
  weakness in the legs so that he is now unable to walk, nausea and vomiting
  became severe and continous.  He c/o of abdominal soreness.  He is unable
  now to urinate.  We continued to call the physician and he told us not to
  worry.  Told us maybe he had the flue.
   Finally, due to his severe dibilitated state we rushed him to the
  hopital.  The neuro surgeon insists that this is not related to the with
  drawal of decadron.  However, he did increase the decadron to 16 mg per day
  and the nausea stopped almost right away.  The surgeon feels that the
  mucsle weakness is due to neuorpathy of unknown etiology and not related
  to the decadron.  The MRI shows no change in tumor size since the radiation
  The physician has not advised us of the tumor grade or prognosis.  He told
  my sister in law she was not to ask questions but to let him do what he
  thought best.  The man within three months looks like the survivor of a
  concentration camp.  Is it possible his symptoms are related to decadron
  withdrawal?  What would be the correct dosage to maintain him.  What would
  cause his inability to urinate?  What is the prognosis for this type of
  tumor.  I think he needs a new doctor but my sister in law is afraid to
  change.  The next nearest hospital is several hours away in Los Angeles.
  Please advice sorely needed.  Thank you.
__________________________________________
------------------------------------------
Dear Debbie,
Pineal body tumors are usually benign lesions.  They may cause problems in
two ways, first by mass effect on local tissues, and second via hydrocephalus.
The hydrocephalus is from the tumor blocking the normal pathway that the CSF
drains from the brain.  Therapy for these tumors would include surgery, which
may be difficult, or radiation.  
Many patients with pineal tumors require a shunt to relieve CSF pressure from
the ventricles of the brain.  Unfortunately, shunts at times do malfunction.
This may be caused by kinking of the tubing, disconnection, infection or
particulate matter gumming up the valve mechanism.  When a shunt malfunctions
the patient will manifest with symptoms of headache, drowsiness, nausea and
vomiting.  An infected shunt may be red and swollen at the skin and present
with a raging fever, but not always, as can be seen with indolent shunt
infections.  Usually the CT (or 'cat') scan will show enlarged ventricles.
In the case of your brother it is a bit early to assess the complete effect
that radiation has had on the tumor.  If the most recent MRI demonstrated
no change in the tumor size, the recent problems may be due to hydrocephalus.
Your neurosurgeon should be able to tell you whether he thinks the recent
problems are from the tumor or hydrocephalus, based on physical examination
and recent scans.  If you do not understand the situation you should press
your neurosurgeon to explain the situation in plain terms.  If you still
cannot get a reasonable answer, you may choose to get a second opinion
from another neurosurgeon.  Don't be afraid to ask questions.
Good luck.