My wife and I have been reading through some of the comments here and feel a need to share our experience as our son has just returned (today!) from endoscopic fenestration of an arachnoid cyst in the right ventricle. Many of the symptoms that have been described in the comments here are similar to those experienced by him. Was a top student, began a slow deterioration in focus and concentration, dizziness, vertigo, severe headaches and pressure in the head, possible ADD. We were also told that he may have pseudo tumour cerebra (?!). To cut a 3 year story short I found an article online by Prof Knut Wester from Norway. His group took a very liberal approach to cyst removal and/or fenestration. They found a clear improvement in cognitive tests before and after surgery in 80% of cases. They concluded that the determining factor in cyst symptoms was the intracystic pressure (pressure within the cyst) and not the intracranial pressure (CSF pressure) or size of the cyst. None of the neurosurgeons we spoke to were aware of this paper. The literature is very divided on how to approach cysts from ultra-conservative to ultra-liberal as in the Norwegian study. In my opinion the Norwegian study is a landmark study and although it is still too early to tell with our son, although he definitely feels an improvement already, there is certainly evidence to suggest that cysts may be the cause of many of the symptoms described in the comments. I personally have an Undergraduate degree in Biophysics and Masters in Physiology. I would like to see more studies done like those that the Norwegian group did. They even went as far as proposing that ALL cysts may actually be symptomatic to some degree but the brain is able to compensate for the effects of the cyst up to a certain point. Makes perfect sense to me but many doctors are unaware of this study and take a very conservative approach in order to avoid, albeit understandably, unnecessary brain surgery. To cut a long story short yes the cyst may well be the cause of many of the symptoms described here. There are neurosurgeons who are willing to operate but they will likely want to be sure that other factors are ruled out before considering surgery even though the complications involved with endoscopic fenestration are relatively low. If you have been struggling then I would advise building a case for yourself before next visiting your neurologist or neurosurgeon. Come prepared with a copy (or copies) of Prof Wester's paper and other similar ones.
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My wife and I have been reading through some of the comments here and feel a need to share our experience as our son has just returned (today!) from endoscopic fenestration of an arachnoid cyst in the right ventricle. Many of the symptoms that have been described in the comments here are similar to those experienced by him. Was a top student, began a slow deterioration in focus and concentration, dizziness, vertigo, severe headaches and pressure in the head, possible ADD. We were also told that he may have pseudo tumour cerebra (?!). To cut a 3 year story short I found an article online by Prof Knut Wester from Norway. His group took a very liberal approach to cyst removal and/or fenestration. They found a clear improvement in cognitive tests before and after surgery in 80% of cases. They concluded that the determining factor in cyst symptoms was the intracystic pressure (pressure within the cyst) and not the intracranial pressure (CSF pressure) or size of the cyst. None of the neurosurgeons we spoke to were aware of this paper. The literature is very divided on how to approach cysts from ultra-conservative to ultra-liberal as in the Norwegian study. In my opinion the Norwegian study is a landmark study and although it is still too early to tell with our son, although he definitely feels an improvement already, there is certainly evidence to suggest that cysts may be the cause of many of the symptoms described in the comments. I personally have an Undergraduate degree in Biophysics and Masters in Physiology. I would like to see more studies done like those that the Norwegian group did. They even went as far as proposing that ALL cysts may actually be symptomatic to some degree but the brain is able to compensate for the effects of the cyst up to a certain point. Makes perfect sense to me but many doctors are unaware of this study and take a very conservative approach in order to avoid, albeit understandably, unnecessary brain surgery. To cut a long story short yes the cyst may well be the cause of many of the symptoms described here. There are neurosurgeons who are willing to operate but they will likely want to be sure that other factors are ruled out before considering surgery even though the complications involved with endoscopic fenestration are relatively low. If you have been struggling then I would advise building a case for yourself before next visiting your neurologist or neurosurgeon. Come prepared with a copy (or copies) of Prof Wester's paper and other similar ones.
June 2, 2016 - 12:39pmThis Comment
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