Thank you for your excellent analysis. It helped me to read all of the work of Professor Wester and his colleagues that I could find. My 18 year old son has a reasonably small arachnoid cyst but it is located in a very tight spot right in the middle of his cerebellum--it's a posterior fossa retrovermian arachnoid cyst. After getting a specialized set of upright MRI studies we could see the erosion of the skull wall, a bony structure that had formed around it, and shifts it had caused in the positioning of the left occipital lobe (a shift across the midline), as well as pressure on the cerebellum. I am working towards getting my son surgery for this--his primary complaint being a headache that won't quit since September 2015 and constant visual disturbances. The insurance company is balking at medical necessity which I think is totally ridiculous. I wanted to do two things in this comment on your excellent post. One was to ask you if you had considered Dr. Hrayr Shahinian who does endoscopic resection (removal) of arachnoid cysts instead of fenestration since fenestrated cysts sometimes refill? Also, I wanted to cut and paste a series of articles which have helped clarify my understanding about something that is pretty hard to understand especially when the medical establishment is basically still in denial about the havoc these cysts can wreak on the people who have them. These articles in combination with my son's outstanding neurologist/headache specialist (Dr. Mahan Chehrenama of McLean VA, a suburb of Washington DC), and several other experts who she has brought into the process, helped me see the rationale for why the cyst has to go. The recent research is really 100% pro-surgery, even in non-surgical journals. Partly because it works, and partly because the risks of surgery have gone down considerably with the newer endoscopic techniques. The Norwegian articles are outstanding and I sent them to one of the neurosurgeons I consulted who is not up to date on the latest research and was skeptical to say the least on operating. For those who have the stomach for it, doing searches on NIH's pubmed really gives one a lot of information. It is an incredible resource and is updated often on Arachnoid Cysts right now--there is almost a revolution on thinking about them--especially when they press on cerebral tissue. Interestingly there is also a revolution in thinking on the cerebellum and its wide-reaching functions beyond motor control and balance led by Dr. Jeremy Schmahmann at Harvard--his articles are on pubmed and his lectures are on you tube. I didn't include the cerebellum research here though. Included here are the articles (abstracts mostly) that I found most helpful in my thinking process about Arachnoid Cyst surgery--whether to do it.
If you can tell me your thinking on fenestration, I would very much appreciate it. Best wishes for your son's recovery--please update us on that too! I know how many times my son and I have thought something was going to work only to realize it didn't, but on AC surgery, the research shows incredibly high success with headaches and cognition. I am praying and am thinking that it worked for your son! Congrats in advance!
Here are the most important articles in my research on Arachnoid Cyst surgery...the recent ones are more and more compelling on operating vs. leaving them when there is headache and/or dizziness, and possibly just having one that is putting"tension" on any brain tissue as one article describes is enough to say it needs to go. I am in for a battle with my insurance company it looks like, but I am determined to help my son, and I am convinced that this surgery will change his life.
1. Neurosurgery, May 2016: Surgical Decompression of Arachnoid Cysts Leads to Improved Quality of Life: A Prospective Study. Mørkve SH1, Helland CA, Amus J, Lund-Johansen M, Wester KG.
http://www.ncbi.nlm.nih.gov/pubmed/26540351
Knut Wester, MD, PhD, Professor Emeritus, University of Bergen, Norway, Past Professor and Chairman, Department of Neurosurgery, Haukeland University Hospital, Norway, has been the leader in studying Intracranial Arachnoid Cysts (IACs), their impact on the brain, and the results of removing them.
2. Journal of Neurology, Neurosurgery, and Psychiatry, October 2007: A population based study of intracranial arachnoid cysts: clinical and neuroimaging outcomes following surgical cyst decompression in adults
Christian A Helland and Knut Wester
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117571/
Key point from article: “….The treatment of such cysts, particularly in the majority of the patients with moderate and unspecific symptoms, has been controversial.11,12,13,14,15 Many authors have expressed a reluctance to operate on these patients unless the symptoms are dramatic. This was also the initial attitude of the senior author. However, based on several observations of our own and those of others, we have gradually changed our view. When we encountered patients that were severely impaired, with symptoms such as headache or dizziness, and who also had radiologically expansive cysts, we found it logical to attempt to alleviate the complaints by surgical cyst decompression. It has been our accumulated experience that surgical decompression yields clinical improvement in most patients with arachnoid cysts. Also, a growing literature indicates that cyst decompression improves the function of neighbouring cerebral tissue, thus supporting the view that patients with unspecific symptoms and “clinically silent” cysts may also profit from surgical cyst decompression.4,6,7,8,9,10,16”
3. Neurology, 2005: Arachnoid cysts cause cognitive deficits that improve after surgery.
Raeder MB1, Helland CA, Hugdahl K, Wester K.
http://www.ncbi.nlm.nih.gov/pubmed/15642927
Point of article: self-explanatory!
4. Journal of Neurodevelopment Disorders, 2013: Intracranial arachnoid cysts: impairment of higher cognitive functions and postoperative improvement Priyanthi B Gjerde,1 Marit Schmid,3 Åsa Hammar,3,4 and Knut Wester1,2
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766187/
5. International Journal of Clinical and Experimental Medicine, October 2015: Analysis on clinical characteristics of intracranial Arachnoid Cysts in 488 pediatric cases. Jian-Huang Huang,1,* Wen-Zhong Mei,1,* Yao Chen,1 Jian-Wu Chen,1 and Zhi-Xiong Lin1,2
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694337
Tension with cerebral tissue is key criterion used to recommend surgery with 80%+ good results.
6. Neurosurgery Focus, April 2016: Sport-related structural brain injury associated with arachnoid cysts: a systematic review and quantitative analysis.
http://www.ncbi.nlm.nih.gov/m/pubmed/27032926/?i=3&from=retrovermian%20arachnoid%20cyst
Kids with ACs have more problems than those without ACs after sport-related brain injuries (my son had a lot of hits to the back of his head after his first and second wrestling season which seemed to correlate with the beginning of his headaches)
7. Asian Journal Neurosurgery, Jan-Mar 2015: Posterior fossa arachnoid cysts in adults: Surgical strategy: Case series.
Srinivasan US1, Lawrence R2.
https://www.ncbi.nlm.nih.gov/pubmed/25767579
8. Neurosurgery Review, July 2010: Posterior fossa arachnoid cysts and cerebellar tonsillar descent: short review.
Galarza M1, López-Guerrero AL, Martínez-Lage JF.
https://www.ncbi.nlm.nih.gov/pubmed/20480382
Possible causal relationship between posterior fossa ACs and cerebellar tonsillar descent resulting in Chiari deformations over time. [I have been told that my son's cerebellar tonsils are a bit low, but not low enough to diagnose as Chiari deformation]
9. Turkish Neurosurgery, 2012: Surgical management strategies of intracranial arachnoid cysts: a single institution experience of 75 cases. Duz B1, Kaya S, Daneyemez M, Gonul
https://www.ncbi.nlm.nih.gov/pubmed/23015336
Comment Reply
Thank you for your excellent analysis. It helped me to read all of the work of Professor Wester and his colleagues that I could find. My 18 year old son has a reasonably small arachnoid cyst but it is located in a very tight spot right in the middle of his cerebellum--it's a posterior fossa retrovermian arachnoid cyst. After getting a specialized set of upright MRI studies we could see the erosion of the skull wall, a bony structure that had formed around it, and shifts it had caused in the positioning of the left occipital lobe (a shift across the midline), as well as pressure on the cerebellum. I am working towards getting my son surgery for this--his primary complaint being a headache that won't quit since September 2015 and constant visual disturbances. The insurance company is balking at medical necessity which I think is totally ridiculous. I wanted to do two things in this comment on your excellent post. One was to ask you if you had considered Dr. Hrayr Shahinian who does endoscopic resection (removal) of arachnoid cysts instead of fenestration since fenestrated cysts sometimes refill? Also, I wanted to cut and paste a series of articles which have helped clarify my understanding about something that is pretty hard to understand especially when the medical establishment is basically still in denial about the havoc these cysts can wreak on the people who have them. These articles in combination with my son's outstanding neurologist/headache specialist (Dr. Mahan Chehrenama of McLean VA, a suburb of Washington DC), and several other experts who she has brought into the process, helped me see the rationale for why the cyst has to go. The recent research is really 100% pro-surgery, even in non-surgical journals. Partly because it works, and partly because the risks of surgery have gone down considerably with the newer endoscopic techniques. The Norwegian articles are outstanding and I sent them to one of the neurosurgeons I consulted who is not up to date on the latest research and was skeptical to say the least on operating. For those who have the stomach for it, doing searches on NIH's pubmed really gives one a lot of information. It is an incredible resource and is updated often on Arachnoid Cysts right now--there is almost a revolution on thinking about them--especially when they press on cerebral tissue. Interestingly there is also a revolution in thinking on the cerebellum and its wide-reaching functions beyond motor control and balance led by Dr. Jeremy Schmahmann at Harvard--his articles are on pubmed and his lectures are on you tube. I didn't include the cerebellum research here though. Included here are the articles (abstracts mostly) that I found most helpful in my thinking process about Arachnoid Cyst surgery--whether to do it.
If you can tell me your thinking on fenestration, I would very much appreciate it. Best wishes for your son's recovery--please update us on that too! I know how many times my son and I have thought something was going to work only to realize it didn't, but on AC surgery, the research shows incredibly high success with headaches and cognition. I am praying and am thinking that it worked for your son! Congrats in advance!
Here are the most important articles in my research on Arachnoid Cyst surgery...the recent ones are more and more compelling on operating vs. leaving them when there is headache and/or dizziness, and possibly just having one that is putting"tension" on any brain tissue as one article describes is enough to say it needs to go. I am in for a battle with my insurance company it looks like, but I am determined to help my son, and I am convinced that this surgery will change his life.
1. Neurosurgery, May 2016: Surgical Decompression of Arachnoid Cysts Leads to Improved Quality of Life: A Prospective Study. Mørkve SH1, Helland CA, Amus J, Lund-Johansen M, Wester KG.
http://www.ncbi.nlm.nih.gov/pubmed/26540351
Knut Wester, MD, PhD, Professor Emeritus, University of Bergen, Norway, Past Professor and Chairman, Department of Neurosurgery, Haukeland University Hospital, Norway, has been the leader in studying Intracranial Arachnoid Cysts (IACs), their impact on the brain, and the results of removing them.
2. Journal of Neurology, Neurosurgery, and Psychiatry, October 2007: A population based study of intracranial arachnoid cysts: clinical and neuroimaging outcomes following surgical cyst decompression in adults
Christian A Helland and Knut Wester
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117571/
Key point from article: “….The treatment of such cysts, particularly in the majority of the patients with moderate and unspecific symptoms, has been controversial.11,12,13,14,15 Many authors have expressed a reluctance to operate on these patients unless the symptoms are dramatic. This was also the initial attitude of the senior author. However, based on several observations of our own and those of others, we have gradually changed our view. When we encountered patients that were severely impaired, with symptoms such as headache or dizziness, and who also had radiologically expansive cysts, we found it logical to attempt to alleviate the complaints by surgical cyst decompression. It has been our accumulated experience that surgical decompression yields clinical improvement in most patients with arachnoid cysts. Also, a growing literature indicates that cyst decompression improves the function of neighbouring cerebral tissue, thus supporting the view that patients with unspecific symptoms and “clinically silent” cysts may also profit from surgical cyst decompression.4,6,7,8,9,10,16”
3. Neurology, 2005: Arachnoid cysts cause cognitive deficits that improve after surgery.
Raeder MB1, Helland CA, Hugdahl K, Wester K.
http://www.ncbi.nlm.nih.gov/pubmed/15642927
Point of article: self-explanatory!
4. Journal of Neurodevelopment Disorders, 2013: Intracranial arachnoid cysts: impairment of higher cognitive functions and postoperative improvement Priyanthi B Gjerde,1 Marit Schmid,3 Åsa Hammar,3,4 and Knut Wester1,2
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766187/
5. International Journal of Clinical and Experimental Medicine, October 2015: Analysis on clinical characteristics of intracranial Arachnoid Cysts in 488 pediatric cases. Jian-Huang Huang,1,* Wen-Zhong Mei,1,* Yao Chen,1 Jian-Wu Chen,1 and Zhi-Xiong Lin1,2
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694337
Tension with cerebral tissue is key criterion used to recommend surgery with 80%+ good results.
6. Neurosurgery Focus, April 2016: Sport-related structural brain injury associated with arachnoid cysts: a systematic review and quantitative analysis.
http://www.ncbi.nlm.nih.gov/m/pubmed/27032926/?i=3&from=retrovermian%20arachnoid%20cyst
Kids with ACs have more problems than those without ACs after sport-related brain injuries (my son had a lot of hits to the back of his head after his first and second wrestling season which seemed to correlate with the beginning of his headaches)
7. Asian Journal Neurosurgery, Jan-Mar 2015: Posterior fossa arachnoid cysts in adults: Surgical strategy: Case series.
Srinivasan US1, Lawrence R2.
https://www.ncbi.nlm.nih.gov/pubmed/25767579
Excising and/or fenstrating posterior fossa ACs yields “excellent long-term outcome.”
8. Neurosurgery Review, July 2010: Posterior fossa arachnoid cysts and cerebellar tonsillar descent: short review.
Galarza M1, López-Guerrero AL, Martínez-Lage JF.
https://www.ncbi.nlm.nih.gov/pubmed/20480382
Possible causal relationship between posterior fossa ACs and cerebellar tonsillar descent resulting in Chiari deformations over time. [I have been told that my son's cerebellar tonsils are a bit low, but not low enough to diagnose as Chiari deformation]
9. Turkish Neurosurgery, 2012: Surgical management strategies of intracranial arachnoid cysts: a single institution experience of 75 cases. Duz B1, Kaya S, Daneyemez M, Gonul
https://www.ncbi.nlm.nih.gov/pubmed/23015336
90%+ resolution of headaches through surgery.
July 20, 2016 - 5:14pmThis Comment
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