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Neurology (Expert Forum)
Arachnoid Cyst
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Arachnoid Cyst
by tena, Apr 04, 2002 12:00AM
My daughter age 20 was diagnosed with an Arachnoid Cyst at 14found accidently with MRI done for Migraine/Seizures, she has bilateral 30% hearing loss. The cyst report stated Large cystic mass 2 cm x 1.4 cm in AP dimension within the quadrigeminal cistern closely approximates CSF signal on all images with adjacent linear & tubular areas of flow void with small areas of enhancement at the peripheral margins. Areas most likely represent adjacent vascular structures . No definite solid component demonstrated. Remainder normal no evidence of acute hemmorrhage focal parenchymal signa abnormality or territorial infarction. Normal flow void persists within the major vessels at the base of brain. Paranasal sinuses remain unremarkable, sellar structures normal. This elevates the posterior body & the spenium of the courpus callosum & compresses the tectum and cerebral aqueduct no evidence for associated hydrocephalus. I was told by 4 doctors that the cyst was not causing her symptoms and to leave it alone. There have been no symptoms for 4 years she is healthy and normal. Will flying affect this cyst, I am very concerned and afraid for her to fly? Do you think her symptoms were caused by the cyst? If this cyst ever needed surgery considering it's position in the brain, can that be done?Is it likely that this cyst will grow? Seizure like smyptoms lasted 1 year from age 14 to 15 and have disapeared.Is is possible that the cyst has disapeared? She is flying very soon and I cannot find any information about the dangers of flying, that is my main question. Thank you very much
Doctor's Answer
by CCF-Neuro-M.D.-JT, Apr 10, 2002 12:00AM
Sorry to hear about your daughter's symptoms. It's extremely difficult to try to comment on an MRI that I have not personally seen and prognosticate when I have not examined the patient or taken a full history. What I can tell you is that although arachnoid cysts can cause seizures depending on their location (they should be at the surface of the brain, theoretically irritating the cerebral cortex to cause seizure), your daughter;s cyst is too deep in her brain to be the cause of her seizures. ANd if the cyst is not blocking anything as mentioned in the report (no evidence for hydrocephalus) then theoretically it should not be causing her migraines either - although it is a possibility depending on where it is exactly (I really have to see it myself). As for your concerns about her flying, there shouldn't be any problems with regards to the cyst. Best of luck to your daughter.
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I'm sorry your daughter has this. Hopefully the neuro will have something that will help.
Hope someone can help, I have 3 1/2 yr boy, who started displaying what we would say are migraines, this happened like once every 2 mths for a year may be not that often, but he would look like he was going to get sick then he would say his head hurt. Took him to Doc says well very possible, husbands family has history of migraines. Then he started doing this weird head tilting tongue thrust stuff acting goof but like he could not control or I don't even think he knew he was doing it, so took him back, they said well we will do MRI, so we did MRI and EEG and blood work. MRI showed cyst 1cm on top of his head, like where his soft spot was, and eeg was normal no other findings other than he was borderline anemic (sp) so........
We went and seen pediatric neuro, she says not to worry, what he is doing is a tic and that the cyst is on top of the brain not in it and it is showing no pressure at all. ***Forgot to mention he would also say mommy I want to feel better, I would ask him how he felt bad and he would say his head hurt? Also he rubs his eyes, but eye exam neg..... He also will get this weird look on his face and say I don't like hotdogs??? Cannot figure this out? She says that the cyst is just a finding and not relevant to anything else...and will follow up with a MRI contrasted in 6 months, he has almost completely quit the head tilt head hurt thing, we have just stopped talking about it, and it seems to have let up. Til today I noticed him taking a deep breath and sighing, I asked what was wrong and he said I don't like hotdogs???? I just don't get it, they did not give the cyst a name? Any ideas on what I should do?
Thanks for your response, The cyst is inbetween the skull and the brain, no you cannot feel it. What is this about flying?
Meanwhile, we are also told to not worry about it. I am a little confused as well because there is no room in your "head" for "things" that should not be there. If it is not suppose to be there I feel they should do something about it.
Have you spoken with a neurologist or neurosurgeon? We have only seen a neurologist and have been told that there are times a neurosurgeon will see things a little differently than a neurologist. I am not sure what the difference is.
Hang tight, Tena.
I have found over the years that when there are breaks in the school year - like Easter break - the responses made by the CCF neurologist came a little later. Also, it seems that when the question isn't real ordinary, there is a little delay. I am sure you will hear from them soon. I know that you are probably anxious because I posted and there are all of these others and feel you may be overlooked. I've had that situation before, too, but they always come through.
kd
I am so very frustrated. I have put up with increasing pain and finally went to a doctor and got on pain medication. I had been avoiding the use of meds because I didn't want to become addicted but the pain has become so intense that I couldn't take it anymore.
I am still searching for someone who will do something about the cyst; drain it or remove it. I am determined to find a doctor that isn't afraid to do something about it. I have tried researching this and find that this is even rarer than the cysts located in the brain, as in the case of your daughter. I have been told that it is rare for these type of cysts to be causing the problems I have been having but I was also told that nothing ever happens in the thoracic area either and I proved them wrong there (it took 2 1/2 years before someone listened).
I am going to see about a shunt to drain the cyst this time. after the first surg. his little eyes were swelled shut, and I don't want to put him through that again. My prayer are with you.
She has two grandchildren and tells me she cannot remember their names at times. She is scared.
I was looking up treatment when I found this forum.
It is difficult to comprehend all of this. I started yesterday looking up info. Tonight, I was looking again and am making a list to share with her , on questions to ask when she goes to the Specialist Monday.
Her and I started one on Wed.
I am wondering if I should email her these site locations to read & see herself, or would it be to scary? Everyone is different.
I will try to check in sometime this week.
I see mostly children seem to have this. Have seen a couple of adults too.
Good luck to you all. Hope everything works out for all.
MANY adults have arachnoid cysts. That was one of the ways they first got any data on it. During the autopsies of people who died for other reasons, numerous arachnoid cysts have been found in adult people. From what I have been told by my son's neurosurgeon and from what I have read, the arachnoid cyst can be more serious in an adult because the head structure is already established and a "space-occupying lesion" such as a cyst or a tumor starts to push on those established structures and causes symptoms. In a child, the skull is still growing for some time, the structures inside are still developing, and, indeed, the function assignments are still being made. So, if a child has a cyst since birth, the brain makes adjustments around its being there. Therefore, there may be few symptoms. It is when the cyst gets larger and impinges on something important in the brain that the symptoms occur.
To the person whose child has headaches, try having him/her sleep on multiple pillows. This raises the head so that the pressure inside is more like when he/she is sitting and it may help. My son figured this one out on his own. Since the surgeries, he's gone back to sleeping flat with no problem.
One issue to consider, at least for children...taking out a cyst vs reducing the cyst. As I said earlier, my son's cyst was about 1/3 of his brain. IF they had taken it out (as some neurosurgeons wanted to), there wouldn't have been anything to take up that space and the brain could have pulled away from the skull, causing serious hemorrhaging and resulting in problems that he didn't have going into it. Make sure you talk to the surgeon about draining it. Get several opinions. During the last surgery, even tho my son has hydrocephalus, they simply put a drainage tube into the site for awhile while he recovered from the surgery. He didn't need a permanent shunt.
First you have to understand what the arachnoid membrane does. It bathes the pia and dura matter in a nutritional bath that feeds the nervous system. You can do this research on the net but I will save you about 13 years of agony, frustration and understanding. I don’t think any doctor can tell you what is going on with someone that has an arachnoid cyst, only someone else that has one and I haven’t found a doctor yet that knows what they are talking about and I still think they are all idiots.
Now that you understand that the arachnoid membrane touches ROOT of the nervous system you can start to understand that this is a disease of the nervous system (similar to MS) and you should feed your loved one that has one unprocessed foods and their diet should include foods that will help protect the nerves. Aloe Vera is a great one; omega 3 foods and vitamin B6 will help with the tingling sensations until you have to go on something more severe such as Neurontin. It is also important not to keep excessive weight on your spine because that will add to the long-term damage that someone with one of these can have. I highly recommend a body blade to keep in shape because it was developed by a Physical Therapist for people like us.
These are not the kinds of things that you wait and see what happens. I had mine aspirated from the size of a plum to the size of a grape. I know that since mine is in my subarachnoid space above my pituitary gland where my spine meets my brain I have been paralyzed from the neck down 2 times and have started to develop further degenerative conditions. Headaches are a mainstay, neck tenderness; difficulty swallowing, extreme sensitivity to temperature (especially cold), and pain in my spine, trouble holding my head up the list can go on and on.
There has GOT to be more research done on these things. There is not enough information and since it can be in different parts of your brain it can affect different parts of your body. Emotional stability is out the door. Sometimes I don’t think I realize I am being difficult or like my mom used to say there was this “grey” area in my thinking. I liken it to having a short circuit… I want to say something sometimes and it doesn’t come out for another 2 hours to 2 days later. It’s very difficult to concentrate because you are trying to keep your body in check from feeling the pain so much but then on the other hand you are still expected to act like a normal human being.
Fatigue is a big problem as well. Getting other diseases such a mono will only add fuel to the fire. I also developed shingles when I was 15 and I am beginning to believe it was because of the cyst. I had a traumatic head injury when I was 3 or 4, which left a gigantic scar going across the center of my skull, which could have triggered it. I also believe that anyone with one of these things might have a slight form of eplisey.
Do research and be exhaustive. There is not enough research going into these conditions and there aren’t enough people publishing their findings… maybe there is one idiot out there that knows what is going on. If you find him, let me know!
Catherine Clay
First you have to understand what the arachnoid membrane does. It bathes the pia and dura matter in a nutritional bath that feeds the nervous system. You can do this research on the net but I will save you about 13 years of agony, frustration and understanding. I don’t think any doctor can tell you what is going on with someone that has an arachnoid cyst, only someone else that has one and I haven’t found a doctor yet that knows what they are talking about and I still think they are all idiots.
Now that you understand that the arachnoid membrane touches ROOT of the nervous system you can start to understand that this is a disease of the nervous system (similar to MS) and you should feed your loved one that has one unprocessed foods and their diet should include foods that will help protect the nerves. Aloe Vera is a great one; omega 3 foods and vitamin B6 will help with the tingling sensations until you have to go on something more severe such as Neurontin. It is also important not to keep excessive weight on your spine because that will add to the long-term damage that someone with one of these can have. I highly recommend a body blade to keep in shape because it was developed by a Physical Therapist for people like us.
These are not the kinds of things that you wait and see what happens. I had mine aspirated from the size of a plum to the size of a grape. I know that since mine is in my subarachnoid space above my pituitary gland where my spine meets my brain I have been paralyzed from the neck down 2 times and have started to develop further degenerative conditions. Headaches are a mainstay, neck tenderness; difficulty swallowing, extreme sensitivity to temperature (especially cold), and pain in my spine, trouble holding my head up the list can go on and on.
There has GOT to be more research done on these things. There is not enough information and since it can be in different parts of your brain it can affect different parts of your body. Emotional stability is out the door. Sometimes I don’t think I realize I am being difficult or like my mom used to say there was this “grey” area in my thinking. I liken it to having a short circuit… I want to say something sometimes and it doesn’t come out for another 2 hours to 2 days later. It’s very difficult to concentrate because you are trying to keep your body in check from feeling the pain so much but then on the other hand you are still expected to act like a normal human being.
Fatigue is a big problem as well. Getting other diseases such a mono will only add fuel to the fire. I also developed shingles when I was 15 and I am beginning to believe it was because of the cyst. I had a traumatic head injury when I was 3 or 4, which left a gigantic scar going across the center of my skull, which could have triggered it. I also believe that anyone with one of these things might have a slight form of eplisey.
Do research and be exhaustive. There is not enough research going into these conditions and there aren’t enough people publishing their findings… maybe there is one idiot out there that knows what is going on. If you find him, let me know!
Catherine Clay