Re: Pilocytic Astrocytoma Tumor

Posted By Janet Hawkins on April 17, 1997 at 22:40:09:

In Reply to: Re: Pilocytic Astrocytoma Tumor posted by test on April 14, 1997 at 16:53:27:







: : This Message was posted by: Dee -  4/6/97 6:50:39 PM

Message:
Hello, I hope you can help me. I have recently had surgery for a pilocytic astrocytoma (2/14/97). Fortunately the tumor was
benign. I have been searching the internet for some input on a symptom which seems, I'm told by my doctors, unusual. I have a
great deal of head noise, i.e. it sounds like I have an airplane engine going on in my head at all times. I can hear people who
speak to me, however I can hear little else. I can not use the phone, or hear conversation behind me. My doctors have not
been able to detect a problem with my hearing, inner or middle ear. Surgery was supposedly a great success. I am fully
functioning otherwise. In my doctors search he can not find another with the same symptom. Surgery was 2/14/97 and the
noise has not subsided. I was taking Decadron and Tagament. I am not an any medication at this time. I have gone for an
MRI, MRA, MRV and lasting a Spinal Tap. I am a 42 year old female. Dr. Camel from
reenwich, CT performed the surgery at Greenwich Hospita I have alos consulted with Dr. Posner from Sloan Kettering in
New York. Both Doctors have consulted with one another and many, many of their colleagues. Any suggestions or comments
would be greatly appreciated. Thank you for your time. Dona Menton
Sorry if you receive this message twice - i was having a little trouble with my Email Thank you



  =
TEST
Dear Dee,
I am sorry to hear about your brain tumor.  My daughter, Kelsey, age 8, also has a pilocytic astrocytoma.  Hers is in the tectile region/thalamus in the brain stem.  Where is yours?  Kelsey's first and worst symptom was also noise related, and one that all of the experts had never seen before. (Her doctors were then from NYU and are now at INN (the Institute of Neurology and Neurosurgery at Beth Israel North). It began when she was three so it was difficult for her to verbalize exactly what she was hearing.  She described it to us as the sound of lions growling.  When it would happen, it was so terrifying to her that she would scream, "NO, NO" over and over and literally climb up us with speed and strength well beyond her capabilities.  It would last less than a minute, and could occur as little as a couple of times a week to 8 times in a 2 hr. span.  Hers doctors called it hyperacusis in want of a better word. It got somewhat better after her first very partial resection, but then began happening more in a deead sleep.  Before this it was happening only in the day.  After her second resection ((40%) several months later, it finally stopped.  Her doctors had only seen one patient that would react somewhat like her to sound.  They said that they had an adult male brain tumor patient that went literally out of his mind when a helicopter would land across the street from the hospital.  This patient, however, could not localize sound, and Kelsey has no problems with that.  It is now 4 years since that surgery. She has had another major resection (90%) and 19 months of chemo, and is doing GREAT.  I suggest you get another opinion from the INN as it currently has the
most sophisticated surgical technology in the world.  Good luck!!