I was reading your post and am sorry to hear that your son has this Posterior Fossa Arachnoid Cyst. I know it is frightening to hear your child has anything wrong with them, and is even more frightening when you know it is an issue having to do with the brain.
I have had mine all my life but did not start developing symptoms and problems with it until I was in my mid-thirties. My boys were 3 and 6 and it suddenly cut into my role of being the kind of mom I had always planned on being.....feeling terrible physically, countless doctors appts., surgeries, and on and on. Here it is 10 years later and I am still battling with brain issues related to the cyst and shunt I had to get.
One thing that caught my attention in your post is that your son has apnea. I also dealt with that before my cyst was fenestrated. Terrible apnea. I would wake-up in the middle of the night, coughing, choking and gasping for air. Although my apnea is better today, I still do deal with it at times.
When pressure builds in these cysts, it can put pressure on the brain stem (which controls your breathing), the cerebellum and many other parts of the brain. If you feel like Boston is the best place for you to take him, then I would. I lived in NM at the time, and found the best neurosurgeon, a world renowned neurosurgeon, was in Phoenix. So that is who I sent my records to and his response was that I needed surgery - a fenestration.
If you haven't been in contact with anyone in Boston yet, my advice to you is to start researching the neurosurgeons there and find out which one is most experienced with Arachnoid cysts. Whatever records and/or MRI's you have for your son, find out the protocol in getting them to the doctor to review. Some doctors will review them at no cost and give you their opinion, others may charge a fee to review. He then may want to see him in his office for a physical exam or maybe even a repeat of an MRI.
No matter what answers you get, if you are not satisfied with his/her response, move forward and keep searching to find a neurosurgeon that you "do" feel confident in and are comfortable with his suggestions for treatment, etc.
My book, "It's All in Your Head," chronicles my story and journey with my Arachnoid cyst. It's available on Amazon, through Barnes and Noble, etc. You may find it helpful to see what someone else has been through with it, and learn more about what these cysts are capable of. One thing I will tell you is that if you feel like this cyst is causing symptoms for your son....you've noticed changes in his behavior or physical and mental abilities, then don't let the doctors convince you that there isn't something wrong and that nothing can be done. Many will try to tell people these cysts are typically asymptomatic, but there are plenty of them that "do" cause problems....mine being one of them, and sounds like for your son as well.
Don't give up. Reassure your son often that it will be ok and you will get the answers you need.
All my best. Will say a prayer for your son and do post again as to how things are progressing for you and your son. If you ever have any questions, I'd be happy to try to answer them the best I can.
Comment Reply
HI,
I was reading your post and am sorry to hear that your son has this Posterior Fossa Arachnoid Cyst. I know it is frightening to hear your child has anything wrong with them, and is even more frightening when you know it is an issue having to do with the brain.
I have had mine all my life but did not start developing symptoms and problems with it until I was in my mid-thirties. My boys were 3 and 6 and it suddenly cut into my role of being the kind of mom I had always planned on being.....feeling terrible physically, countless doctors appts., surgeries, and on and on. Here it is 10 years later and I am still battling with brain issues related to the cyst and shunt I had to get.
One thing that caught my attention in your post is that your son has apnea. I also dealt with that before my cyst was fenestrated. Terrible apnea. I would wake-up in the middle of the night, coughing, choking and gasping for air. Although my apnea is better today, I still do deal with it at times.
When pressure builds in these cysts, it can put pressure on the brain stem (which controls your breathing), the cerebellum and many other parts of the brain. If you feel like Boston is the best place for you to take him, then I would. I lived in NM at the time, and found the best neurosurgeon, a world renowned neurosurgeon, was in Phoenix. So that is who I sent my records to and his response was that I needed surgery - a fenestration.
If you haven't been in contact with anyone in Boston yet, my advice to you is to start researching the neurosurgeons there and find out which one is most experienced with Arachnoid cysts. Whatever records and/or MRI's you have for your son, find out the protocol in getting them to the doctor to review. Some doctors will review them at no cost and give you their opinion, others may charge a fee to review. He then may want to see him in his office for a physical exam or maybe even a repeat of an MRI.
No matter what answers you get, if you are not satisfied with his/her response, move forward and keep searching to find a neurosurgeon that you "do" feel confident in and are comfortable with his suggestions for treatment, etc.
My book, "It's All in Your Head," chronicles my story and journey with my Arachnoid cyst. It's available on Amazon, through Barnes and Noble, etc. You may find it helpful to see what someone else has been through with it, and learn more about what these cysts are capable of. One thing I will tell you is that if you feel like this cyst is causing symptoms for your son....you've noticed changes in his behavior or physical and mental abilities, then don't let the doctors convince you that there isn't something wrong and that nothing can be done. Many will try to tell people these cysts are typically asymptomatic, but there are plenty of them that "do" cause problems....mine being one of them, and sounds like for your son as well.
Don't give up. Reassure your son often that it will be ok and you will get the answers you need.
All my best. Will say a prayer for your son and do post again as to how things are progressing for you and your son. If you ever have any questions, I'd be happy to try to answer them the best I can.
Sincerely,
Maria
September 9, 2014 - 7:03amThis Comment
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