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.
I am not the neurologist, obviously. However, my son has a very large arachnoid cyst. It existed since birth but we did not find it until he was 7. (Docs kept ignoring us and we finally got in to see neuro and he thought it was migraine, did the MRI just to cover the bases, and found the cyst. He has had 2 surgeries to lessen the pressure on the brain by the cyst. He had been having a headache every night after he went to bed. The headache was in the center front of his head. Having his head elevated with 2 pillows helped. Apparently where the cyst pressure was pushing on the brain changed when he was lying down causing the headache. He was also not continent until he had the second surgery. The cyst is still there only slightly smaller and that is all that he needed. He does have some hydrocephalus (a bigger head than normal) but he is doing ok. He gets As and Bs in school. Anyway, the point is that before we knew about the cyst, he flew without difficulty and after he had the surgeries, in spited of the continued cyst, he has flown without problems. That doesn't mean the neuro here doesn't have different advice. This is just our experience. All children/cysts are different. BTW: How did your daughter get the cyst? Did anyone say? Did she get hit on the head or fall before all this started? From what I understand, that is a common way for them to occur. Also, from what I understand, many people have them and it doesn't cause them any problems. My son's did because it was a congenital problem and because of its location.
I'm sorry your daughter has this. Hopefully the neuro will have something that will help.
Hello KD, I want to thank you so much for writing your response to my letter.I'm sorry to hear that your son has a cyst too. But it sounds like he's doing very well.When my daughter was 2, she fell and hit her head,concrete floor.She started to pass out and I rushed her to the ER.They kept her overnight, never did an MRI or CT scan and said she would be fine.She did vomit for hours after the fall.When she was 4 she was diagnosed with bilateral hearing loss and they said she was born that way and it was nerve damage.At age 14 she began having a type of seizure.One doc said seizure the other said migraine.It was a partial seizure without the jerking with a blindingheadache.This is why we hadMRI and cyst was discovered.I had 2 neurologist & 2 neurosurgeons check her all agreeing to leave the cyst alonethat it was not causing any symptoms.She still has the hearing loss,seizures lasted a year and have since disapeared, she is now 20.Thank you very much about the flying info, I can't tell you how much I appreciate that.Because of the hearing, they said she would never learn in regular classes without hearing aids.She proved them wrong top A's Excelerated classes also musically talented.I'm lucky.Thanks again, the best with your son.I don't think these cysts are as rare as they say.Good Luck
I have a 9 yr. old son who was diagnosed with epilepsy in 1999. At the time of doing the MRI they also found an arachnoid cyst 2x1.5 cm. He's been to different epileptologists and each one has told us that the cyst was just an incidental finding and that in most cases you are born with it, that it develops when the fetus is developing. They also said not to worry about it. However, I find it noteworthy that I've seen messages from several people who have seizures and a cyst. I've been told that they can get larger or smaller, but usually don't go away. In our son's case, he has no history of any previous injury that would account for his seizures or the cyst. We live in a very large metroplex where the best doctors are available, but I still question the "don't worry about it" attitude. They may be right, but I have to admit that I do wonder about the effects of a cyst, especially where there is no know etiology for the seizures.
Hi Katiedee thanks for posting.I totally agree with you and I know just what you are feeling.I also asked all 4 doctors that checked my daughter,they all said the same thing.Don't worry about it,it's not causing the seizures.You're right also about all these people with cysts and seizures.It's no coincidence and I don't believe it for a second.They also told me that the cyst has nothing to do with her hearing loss, I don't believe that either.I live in NY and had Dr. Fred Epstein, a world reknown pediatric neurosurgeon look at her MRI's and he said the same thing.I took her also to a pediatric neurogist who specializes in seizures and he said the same thing also.So what do you do? These cysts are supposed to be rare so there is no research being done and they don't know enough about it.What scares me is that one of the neurosurgeons that saw my daughter said that her cyst is not easy to get to, although he said it was not impossible.I pray that she will never need surgery.I will worry for the rest of my life.I'm encouraged by you saying that sometimes they get smaller.I haven't had an MRI done on her in a long time,she doesn't want to go, she's older now and it's harder to tell her what to do.I feel for you, good luck & thanks.I'm still waiting for the doc to answer me.
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?
Hi Miss Panic, All the doctors seems to say the same thing.Don't worry,the cyst is not causing the symptoms.I personally don't believe it.There are too many of us out there with kids with cysts who are having strange symptoms of migraine or types of seizures and strange behavior.My daughter had weird symptoms lasting under one year and they have disapeared.They had her on seizure meds for 2 years.I took her to 4 different doctors, so I would suggest that you seek some other opinions.Since your boy has some kind of cyst, you should perhaps see a neurosurgeon for his opinion on whether the cyst should or could be removed.I took my daughter to 2 neurosurgeons and one pediatric neurologist who specialized in seizures and one general neurologist.I went to large teaching hospitals to try and get the best ones.I would still be investigating with even more doctors right now and the reason why I'm not is because she has been fine for the last 5 years, so I'm leaving it alone for now.I hope this doc answers my question about her flying, I'm concerned about that.If your sons cyst is on the outside of his brain then it probably is not an arachnoid cyst and maybe it's easy to get to and remove which might get rid of his symptoms.Is it under his scalp?Can you feel it?My motto is keep trying different docs until you get some help and satisfaction.I wish you all the luck and please post any new findings.
Thanks for your response, The cyst is inbetween the skull and the brain, no you cannot feel it. What is this about flying?
My 31 year old husband suffered a seizure (no history of seizures with him or his family) and underwent all the EEG tests, CTs and MRI. He is also going through sleep apnea tests. In reviewing the results of all tests we were basically told that the seizure was just a freak thing and that all tests came back normal. However, a cyst was detected. This is all that was said of the cyst. Three months later he suffered another seizure and was then put on an anti-convulsant. The diagnoses was the same, basically a freak thing. We were once again convinced that the cyst would not cause any problems. After 7 months of the anti-convulsant he stopped the medication, underwent another MRI. His neurologist agreed with stopping of the medication. We felt that this would be the only way of determining if he truly had a medical condition. Ten days afterwards, he suffered another seizure and was put back on all meds. After obtaining copies of all tests were we able to put a name to the cyst - Arachnoid Cyst. The readings said it was a 2.1cm X 1cm X 2cm at the left meckel's cave. This was the first MRI, which the neurologist says the cyst is larger than what the notes read. The second MRI showed the cyst, no note as to whether it changed in size. There were also other notes that caused concern when doing research. . . "asymmetry of the meckel cave with the left appearing larger than the right." They also now show a Tornwaldt's cyst. We can not seem to find anything on this one. Meanwhile, we are still being told that the seizures are not casued from the arachnoid cyst. However, when you do your research, seizures are a symptom. He also has pressure behind the eyes and has headaches. Of course, we never thought anything about these until we started doing our own reserach. We are currently scheduled to see a seizure specialist at a well known medical research center.
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.
I have just found this site. I have been online all day reading about acrachnoid cysts.My husband was diagnosed 5 yrs. ago with progressive supranuclear palsy. After joining a listserve online and reading about psp almost everyday for the last 5 yrs. I am convinced his problems stem from a acrachnoid cyst which measures 1.5x2.5x3.5 located in the left temproal fossa.Also a thornwalt cyst measuring 1.5 in diameter. One doctor told me with these measurements the cyst would be the size of lemon and if it were in his head he would want it the hell out. He was a surgeon not a neurologist.We have seen many neuro's and none of them will discuss it. Just point blank...IT IS NOT CAUSING THE PROBLEMS...THE END.He has all the symptom's of what I have been reading all day with people who have acrachnoid cysts. If he truly has PSP his disability happened almost overnite,unlike psp symptoms. And if it is just maybe the cyst, he has suffered for 5 yrs. maybe needlessly. How do you find a neuro who will even consider the cyst is causing the problems? Any ideas. Thank you and I wish all of you Good Luck
Hi, I was trying to find out if flying can affect the cyst. My daughter, now 20, is going to fly for the first time in her life and I'm concerned about the pressure that so many people in their ears upon landing and take off. If pressure is felt in the ears, then I was wondering what it would or could do to a cyst in the brain.I contacted her doctors and they said that there are no restrictions for people with cysts and that flying should not be a problem. But when I found this site, which is great, I thought I would check it out with them. But I'm beginning to wonder if I will get an answer. I notice that other answers came the same day or in a day or two. I'll give it a few more days and if they still don't answer, then I will post my question again.
Hi, Your comment about "things" in the head is just great.I've never heard it put so plain and understandable. And it's so true. How can you have something there and not have it effect you? There is too much evidence from people with cysts who also have seizures. The docs just don't enough about this, so all they tell people is that their symptoms are not caused by the cyst.Yes, I did take my daughter to 2 Neurosurgeons, one of them was a world renown pediatric doctor from NY, he was in Readers Digest many times Dr. Fred Epstein. I also took her to 2 different Neurologist, one who specializes in seizures and he said that he thought it was Migraine and not seizures. I think the difference is that the Neurosurgeons operate on the brain, the Neurologists are not surgeons.So yes, they will tell you what can and what cannot be done and how to do it. I think both should be seen in cases of cysts on the brain and I also think 2nd & maybe even 3rd opinions should be sought.You're doing the best thing by seeing someone in a large teaching hospital. My daughter was also put on anti seizure meds for 2 years.She was 14 then and never had another seizure, she's 20 now. At 15 she took herself off the medication and I didn't know it, I thought she was taking it all the time.When the doc tested her blood, he said she weaned herself off them and he never put her back on the medication.I wish you good luck with your husband, I hope you find some answers.If you ever get any info on Tornwaldt's cyst, please post it. I never heard of that one before.
Hi, It seems like you're doing everything that you can do.I think I would just keep looking for a Neurosurgeon who can tell you in plain language what can or cannot be done.The best place to go would be a large city with large teaching hospitals. You are getting the same "run around" that everyone else seems to be getting. But at least the doctors that I saw "discussed" surgery if it became necessary. They do have 2 procedures that they use with Arachnoid cysts, one is a shunt which will let the cyst drain and the other is a more invasion procedure, I'm not sure of the name, but it's something like "fenestration" or something like that and from what I've read, it's not as successful as the shunt procedure and it is more dangerous. Good luck to you,
The surgeries my son had were endoscopic fenestrations. When he had these, not too many docs were doing them. It was not as invasive as the usual surgeries. His cyst is between the lateral ventricles and caused some hydrocephalus. This is not the same place as the ones you mention. They could poke holes in the cyst that allowed some of the fluid to drain into the normal channels so he did not need a shunt.
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.
Thanks so much for making me feel better.I thought that maybe it was something like that and that's why I haven't been answered yet. This is the first time for me on this site and I think it's wonderful. I've never spoken to anyone who had this problem. It is rare, but I've also heard that since CT and MRI came into the picture, they are now seeing them more and more. It makes you wonder. They tell you that the cysts are not causing the problems, yet it's the symptoms themselves that force people to go for the MRI's and CT Scans. Then they find the cysts and tell you it's nothing. This is so frustrating and so very hard because it involves the brain and there is still so much they don't know when it comes to the brain. They can't tell for sure, even with all the fancy tests. There are even more precise tests that can be done, the PET and SPECT scans can tell even more.My daughter has never had those. I wonder if anyone out there has had experiences with those tests. thanks again, and good luck
I vowed I'd stay off but I just wanted you to know I have had experience with PET and SPECT and some of your other questions. I just don't want to get in the way. So, that being said, I will sign off until the Neuro answers your questions.
Hey Tena I am sorry to hear about the run around you are going through. I am having the same problem. I injured myself at work in 1998. It took 2 1/2 years of complaining to the various doctors I was sent to to have them check my thoracic area. In April of 2001 an MRI was done and a cyst was found on my spine between T7 and T8. I was told by a neurosurgeon that it was nothing to worry about, that surgery would do more harm than good. The pain has continued to get worse and another MRI was done in Dec 2001 and not only was the cyst still there but more cystic subtances were found at T9 and T10 and I was told by a radiologist that the bone was starting to grow around the cyst. Again I went to a neurosurgeon and he said that the cyst was not causing the pain and surgery was not needed. I was told by a neurologist that the pain was coming from the area where the cyst is.
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).
Hi drb,Wow, you've had your problems too with the famous line "this cyst means nothing and is not causing your symptoms." I'm so sorry to hear about your pain and it seems so incredible that your condition seems to be getting worse with more evidence of cysts and they still say to leave it alone?I truly think that they are afraid to operate on these cysts because they are so rare and they don't have any experience with them.I would imagine that there are very few who have seen these and who have done surgery on them.If I were you, I would keep looking and look in a large teaching hospital in a large city. The Cleveland Clinic is supposed to be one of the best in the country, I don't know if you're close to them but they have an option from this site to get an appointment with them.I'm not looking for anyone at the moment because luckily my daughter has been fine with no symptoms at all.But if I had to, I would go to this clinic and have them take a look.I'm in NY and it's not that far away from me.The story is the same with so many people with cysts that it seems impossible for them not to cause symptoms.I'm still waiting for an answer to my question.I wonder if they will ever get to me.I wrote this morning but no reply yet.Good luck to you and post any new findings. Thanks
FOrgot to mention treatment options. If indeed the cyst for some reason does begin causing problems such as blockage of CSF flow resulting in hydrocephalus, then a neurosurgeon could theoretically do endoscopic drainage. But this may be tricky as it is deep in her brain. SO unless it is causing problems, I would not pursue surgical management.
When my son Cutter was 5 1/2 years old he started having very bad pains in his head, so bad that he said the inside of his mouth hurt or felt like it was burning, I took him to the emergency room twice before but I just got the run around, on the third trip to the e.r. I insisted on a cat scan, at that time the on call docter stated that my son had a cyst in the lining of his brain, we were sent to do an MRI right then and there. The pressure on his brain was so much that he was wheeled into surgery, I was told that as soon as he was opened up the cyst just shot out on its own. This happened on Sept. 9th 2001. We just did our sixth month follow-up and the ct scan shows that the cyst has regenerated and is larger, my son has no symptoms at this time, but I am very worried, the neuro said not to worry until symptoms reoccur, my son told him "if you weren't finished in there then why did you sew me up". His presonality never changed nor did he complain of headaches until they got unbearable. I am getting a second opinion soon.
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.
I just found out about Arachnoid Cysts Wed night. My mother called from Arkansas to tell me that my sister Diane (50y) was told she had this cyst.
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.
Thanks for responding to me!!! Can you call me or get me your number so I can call you?? This is so similar! Its scaring me! You can email me your number for privacy ***@**** My name is Kathy Please I would really like to speak with you......
My son was diagnosed with an arachnoid cyst at age 3.He has one on both sides of his brain.His head is larger on the left side.He is now 13 and has headaches at leat twice a month.We have also taken him to a specialist and they say not to worry.They also said to make sure that he doesn't bump his head.I like his dr. alot but i think that it should be monitored more than every two years.The last time we had an mri they said that there was no change in its size,which i am very thankful for.He is no longer vomiting when he gets his headaches but he still lays down and sleeps for hours.I was wondering if they are hereditary because my uncle on my mom's side died last year of a brain tumor,my aunt on my dad's side died from a brain anuerism,my son having an arachnoid cyst,and just recently my sister was diagnosed with a cyst on her brain .She has an appointment with a specialist monday 4-22-02.I hope she is ok.time will tell.I would also like to know where i can get info on this subject.Thanks in advance.Take care.
I don't know if it is hereditary. In my readings, they were either present at birth or showed up after a bump on the head. I didn't find anything that said the congenital (present at birth) cysts were the result of heredity. Besides, very few arachnoid cysts are in exactly the same place in any two people. I am not a medical doctor, but in the last poster's case it sure seems like the brain has a greater tendency to have weaker structures(?) Do you also have a lot of strokes in your family? I don't know where you could find an answer to the heredity issue. I've just never seen it addressed.
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.