Expert: Claes-Gustaf Nordquist, M.D. - 12/11/2009

Question
QUESTION: Hello,
    I am new to this, but I would thought I would ask anyway.  One of my children has a brainstem tumor which in inoperable.  Due to the location and size they are not able to biopsy.  They have no idea how long my child has had it or what will happen next as they are 19 yrs old at the present time. They are guessing it is either an astrocytoma or glioma.  Could you please tell me what can be done if anything that will either get rid of this thing or shrink it.  Everything I have read is doom and gloom, but I refuse to give in just yet.  Also are there things as a mother that I should be watching for that could indicate changes and need attention..I'm not afraid of the truth either way, but no one will tell me no matter how many times I ask.  I have been kinda told that they hope my child will outlive the issue so technology can catch up...I know this sounds harsh, but I want my child as they are fun loving, goofy and full of life...I don't want them reduced to being tube fed, bed ridden not knowing if we are there or not...That is not the way they want to live and have told me so....Please try and explain this to me in greater detail...If there is anything that can be done can you please point me in the right direction as to where I should go with my child..It doesn't matter where I have to go as long as the doctor is reputable and has had some success in dealing with this type of tumor...Many thanks in advance for your assistance.
         Stressed out mom in Canada

ANSWER: How big is the tumor? It MAY (but I can not guarantee that) be possible to treat it - if small enough - radiologically without any surgery by the so called "GammaKnife".

I have some computer problems so unfortunately my reply is delayed.

You can also reach me on: http://www.lifestylerescue.com/expert/health-fitness-advice/dr-claes-gustaf/128


---------- FOLLOW-UP ----------

QUESTION: Hello again,
         Thanks so much for responding...The turmor is quite large and is more to the mouth side of the brainstem rather than the back...I have been told it has it's own microscopic bld supply and that if they touch it it could kill my child. So now I sit and wait to see what else comes up.  I have been told that gamma is out of the question due to location and size, but then again that technology is relatively new to our area and someone with more expertise might see it differently...I definately need to know what things are signs of concern since NO one in our area can deal with this..I realize that you may not want to sound bleak but I need to know..right now if something should happen I am stuck going to our local emerg department and watch them scramble as to what to do or where to send my child and that in itself is very scary...I like to plan ahead something like buying a snow shovel before the snow hits and not waiting for a large dumping and then not being able to find one no matter how much money you have or where you look....Please give me the worst senaro and symptoms so I can keep a close eye on my child..Right now they are acting "normal", but I have found their speaking very loud and when I asked if this growth could be anywhere near the auditory area I was kinda ignored...My child although almost 19 prefers to live in denial and does not ask questions...I go to all the dr visits and my child has had many MRI's not only of the head but other areas and there has been no change in size in the last 6 months.  When I asked what will happen if it grows any larger and basically takes up most of the spinal space I was simply told it would push the "water" out of the way...I was under the impression that spinal fluid had to run freely to do it's job...am I wrong in that assumption???  I understand that you do not have the advantage of seeing the MRI's which would give you a clearer picture of the situation, but any information is better than none at this point...We do have another appointment through tele health with a dr in a different area than us later this month and it might also be helpful if you could provide me with questions that I might ask.
         again thank you for your time,
         stressed out in Canada

Answer
Yes if too big (close to 4 cm or more in size) the GammaKnife is unfortunately out of the question at present. To answer the rest of your question I do need access to the full MRI results. If possibhle you can copy it here.

I have some computer problems so unfortunately my reply is delayed.

You can also reach me on: http://www.lifestylerescue.com/expert/health-fitness-advice/dr-claes-gustaf/128