I am sorry to hear about your diagnosis. It is scary hearing these terms, especially when related to your brain. My cyst is about the size of a grapefruit and takes up a very large portion of the brain. I have been told by just about every doctor I have seen, world renowned neurosurgeons, neuro-radiologists, neurologists, radiologists, and neuro-anesthesiologists, that it is either "the" largest or close to the largest cyst they have seen in their years of practice. It is so large it has pushed my brain up and forward, while pushing the back of the brain; the brainstem and cerebellum, downward. It has destroyed my blood brain barrier, making it very difficult to take medications, and it has compromised my pituitary gland, my optic chiasm (where the optic nerves pass causing double vision a lot), as well as other neurological problems.
I really need to have the chiari surgery. My neurosurgeon at Duke will not do it for fear he will make my brain sagging worse. So in order to pursue it, I need to see someone at the Chiari Institute. Someone who performs these types of procedures a lot and may be more familiar with chiari along with brain sagging.
To me, the best advice I think I can give is educate yourself. I did a lot of research on arachnoid cysts, and chiaris when that developed. I also asked a lot of questions and kept notes. I kept notes on my symptoms too, writing down each new symptom so I could either learn about it, or ask questions about it during a doctor's visit. I paid very close attention to my body, learned about my body, and became able to recognize what certain symptoms were- what was causing them and what they meant. It helped me to not be so scared when certain things happened. The more I understood, the more able I was to handle them.
Another piece of advice is to see as many doctors as you need to, to feel good about any decision you will make. Doctors can have a way of intimidating you, making you feel like you are crazy, and trying to make all the decisions for you. Ask them questions at your appt. I would go in armed with written questions so that I could feel more educated when I left. They are usually pretty good at answering questions as long as you are prepared with them.
If you are having symptoms, do not let them tell you are not. Many doctors tried to tell me these cysts are normally asymptomatic and don't cause problems. I knew different because one day I felt fine, the next I was waking up in the middle of the night with my entire body paralyzed...numb head to toe. I was battling terrible sleep apnea...all of which was being caused by the brainstem and cerebellum being compressed, and many, many more symptoms. It took one doctor, Dr. Robert Spetzler at Barrow's Neurological Institute in Phoenix to see my MRI and tell me I was heading down a very wrong road if I didn't have surgery. Thank God for him. So make sure your doctor is not only familiar with arachnoid cysts, but has a lot of experience with them.
If I can be of any more help, let me know. Even if it is just for support; I know what you are going through. I wish you all the best and hope you get the treatment you need and deserve. Don't give up, and don't get discouraged. There is help out there and you WILL get through it!
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I am sorry to hear about your diagnosis. It is scary hearing these terms, especially when related to your brain. My cyst is about the size of a grapefruit and takes up a very large portion of the brain. I have been told by just about every doctor I have seen, world renowned neurosurgeons, neuro-radiologists, neurologists, radiologists, and neuro-anesthesiologists, that it is either "the" largest or close to the largest cyst they have seen in their years of practice. It is so large it has pushed my brain up and forward, while pushing the back of the brain; the brainstem and cerebellum, downward. It has destroyed my blood brain barrier, making it very difficult to take medications, and it has compromised my pituitary gland, my optic chiasm (where the optic nerves pass causing double vision a lot), as well as other neurological problems.
I really need to have the chiari surgery. My neurosurgeon at Duke will not do it for fear he will make my brain sagging worse. So in order to pursue it, I need to see someone at the Chiari Institute. Someone who performs these types of procedures a lot and may be more familiar with chiari along with brain sagging.
To me, the best advice I think I can give is educate yourself. I did a lot of research on arachnoid cysts, and chiaris when that developed. I also asked a lot of questions and kept notes. I kept notes on my symptoms too, writing down each new symptom so I could either learn about it, or ask questions about it during a doctor's visit. I paid very close attention to my body, learned about my body, and became able to recognize what certain symptoms were- what was causing them and what they meant. It helped me to not be so scared when certain things happened. The more I understood, the more able I was to handle them.
Another piece of advice is to see as many doctors as you need to, to feel good about any decision you will make. Doctors can have a way of intimidating you, making you feel like you are crazy, and trying to make all the decisions for you. Ask them questions at your appt. I would go in armed with written questions so that I could feel more educated when I left. They are usually pretty good at answering questions as long as you are prepared with them.
If you are having symptoms, do not let them tell you are not. Many doctors tried to tell me these cysts are normally asymptomatic and don't cause problems. I knew different because one day I felt fine, the next I was waking up in the middle of the night with my entire body paralyzed...numb head to toe. I was battling terrible sleep apnea...all of which was being caused by the brainstem and cerebellum being compressed, and many, many more symptoms. It took one doctor, Dr. Robert Spetzler at Barrow's Neurological Institute in Phoenix to see my MRI and tell me I was heading down a very wrong road if I didn't have surgery. Thank God for him. So make sure your doctor is not only familiar with arachnoid cysts, but has a lot of experience with them.
If I can be of any more help, let me know. Even if it is just for support; I know what you are going through. I wish you all the best and hope you get the treatment you need and deserve. Don't give up, and don't get discouraged. There is help out there and you WILL get through it!
All my best-
October 18, 2009 - 5:00amMaria
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