Hi,
I am first, sorry to hear about your son's diagnosis. I know it is very frightening to hear that your child has anything wrong with their brain. I wish the best for you, your son and family as you start this journey with trying to get him the best treatment.
I am Maria, the one who started the arachnoid cyst addition to empowher. I have a Posterior Fossa Arachnoid cyst that is very large, taking up over a third of my brain. It compresses the brain stem and cerebellum. I have been told by many doctors that it is the largest or one of the largest cysts they had ever seen in their practice.
I had surgery for my cyst in 2005. It was not to remove it, but fenestrate it, which means that the cyst had built-up walls inside (tissue) that was causing the cerebral spinal fluid to get trapped inside the cyst, as opposed to flowing into the cyst, then back out and on with its journey through the ventricles of the brain and down the spinal column. The blockage of tissue walls was causing the cyst to grow and get larger - putting pressure on the different areas of the brain.
I was told that they "could not" remove the cyst because the brain expected it to be there. It had grown, kind of, around the cyst and to remove it, would cause my brain to essentially, go into shock and I would die. I would suggest you asking your doctor (neurosurgeon) whomever you decide to go with for treatment, what his exact plan is with the cyst in surgery. Not all doctors explain well, what their procedure is to treat it during the surgery. Mine entailed the neurosurgeon going into my cyst with a wand-type tool and knocking down the walls to open the cyst up and get it communicating with the rest of the CSF....so the CSF could flow into the cyst and back out without getting trapped.
This did work for a while, (a few months) but I began getting back under pressure again, so they went in and put in a shunt to help keep the fluid draining. I then struggled from that point on, to get the shunt set at the right setting to drain enough but not too much fluid. I had a lot of issues regarding the shunt.....it's been nearly 10 years of dealing with the cyst and shunt, neurosurgeons, symptoms, etc.
I wrote a book about my journey with this AC called, "It's All in Your Head," available on Amazon, through Barnes and Noble, etc. I have heard from many people that were diagnosed with, or their child was diagnosed with a brain cyst, that my story helped them get a better perspective on what is possible with these AC cysts. You may find it beneficial as well.
I tell people to ask lots of questions to their neurosurgeon. If you at any point don't feel comfortable with what they have to say or are doing, it never, never hurts to get another opinion. I know it is hard to travel period, but especially when it's medically related, or your child's medical issue, but if you are interested, you can send a copy of your son's MRI and report to my neurosurgeon in Phoenix...a world-renowned neurosurgeon. For a fee of $100.00 (I believe it still is), he'll read the MRI and report and give you his opinion, whether he thinks surgery is warranted etc. His name is Dr. Robert Spetzler, chief neurosurgeon at Barrow's Neurological Institute - (top-notch neurological clinic).
If you ever have any questions, feel free to contact me. Again, my thoughts and prayers are with you and your family and for the help and restoration of your son's health.
Comment Reply
Hi,
I am first, sorry to hear about your son's diagnosis. I know it is very frightening to hear that your child has anything wrong with their brain. I wish the best for you, your son and family as you start this journey with trying to get him the best treatment.
I am Maria, the one who started the arachnoid cyst addition to empowher. I have a Posterior Fossa Arachnoid cyst that is very large, taking up over a third of my brain. It compresses the brain stem and cerebellum. I have been told by many doctors that it is the largest or one of the largest cysts they had ever seen in their practice.
I had surgery for my cyst in 2005. It was not to remove it, but fenestrate it, which means that the cyst had built-up walls inside (tissue) that was causing the cerebral spinal fluid to get trapped inside the cyst, as opposed to flowing into the cyst, then back out and on with its journey through the ventricles of the brain and down the spinal column. The blockage of tissue walls was causing the cyst to grow and get larger - putting pressure on the different areas of the brain.
I was told that they "could not" remove the cyst because the brain expected it to be there. It had grown, kind of, around the cyst and to remove it, would cause my brain to essentially, go into shock and I would die. I would suggest you asking your doctor (neurosurgeon) whomever you decide to go with for treatment, what his exact plan is with the cyst in surgery. Not all doctors explain well, what their procedure is to treat it during the surgery. Mine entailed the neurosurgeon going into my cyst with a wand-type tool and knocking down the walls to open the cyst up and get it communicating with the rest of the CSF....so the CSF could flow into the cyst and back out without getting trapped.
This did work for a while, (a few months) but I began getting back under pressure again, so they went in and put in a shunt to help keep the fluid draining. I then struggled from that point on, to get the shunt set at the right setting to drain enough but not too much fluid. I had a lot of issues regarding the shunt.....it's been nearly 10 years of dealing with the cyst and shunt, neurosurgeons, symptoms, etc.
I wrote a book about my journey with this AC called, "It's All in Your Head," available on Amazon, through Barnes and Noble, etc. I have heard from many people that were diagnosed with, or their child was diagnosed with a brain cyst, that my story helped them get a better perspective on what is possible with these AC cysts. You may find it beneficial as well.
I tell people to ask lots of questions to their neurosurgeon. If you at any point don't feel comfortable with what they have to say or are doing, it never, never hurts to get another opinion. I know it is hard to travel period, but especially when it's medically related, or your child's medical issue, but if you are interested, you can send a copy of your son's MRI and report to my neurosurgeon in Phoenix...a world-renowned neurosurgeon. For a fee of $100.00 (I believe it still is), he'll read the MRI and report and give you his opinion, whether he thinks surgery is warranted etc. His name is Dr. Robert Spetzler, chief neurosurgeon at Barrow's Neurological Institute - (top-notch neurological clinic).
If you ever have any questions, feel free to contact me. Again, my thoughts and prayers are with you and your family and for the help and restoration of your son's health.
God Bless,
Maria McCutchen
December 9, 2014 - 8:27amThis Comment
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