My 11 yr old daughter has a cyst on her pineal gland - actually the MRI report reads " pineal gland contains two cysts, the gland measuring approx. 9mm". She also has a tiny right choroidal fissure cyst and a small venous anomaly in the right frontal lobe. The report gives no measurements, I stated it just as it was written. I was smart enough to request the report. Her neuro never called, after waiting 3-4 weeks I put in a call to his office and he called me back saying "her MRI is not normal" then proceeded to give me the same info I read in the report. He wanted to repeat the MRI in 6 months to see if there are any changes - "if not then she was probably born with all this, if there are changes we will deal with them then". Well, we just had the 2nd MRI on 1/16/09 and I am awaiting the results.
All of this came about because in May 08 she had a strange episode when outside playing - she said she felt this burning sensation in her neck that went up her head and it felt like someone grabbed her hair at the crown and pulled it and she couldn't move, her tounge felt like it curled back. This only lasted a few seconds. She was a bit dazed or scared, not sure which one. Well between this and the week before a new eye dr asking if I ever noticed her one pupil is larger than the other - no, I have never been told that before - and her complaining of headaches almost daily which she has never complained about before, I took her to the pediatrician who then sent me to the neuro. Neuro did an EEG in the office - he told me that showed a flucuation during the strobe light. He said could be migraines or seizure. He then wanted to do a 48 hour EEG. Results from the 48 hour EEG were - and I quote the dr - "intermittent slow activity at back of head, this is not normal". And because of this we did the MRI.
Radiologist states on MRI #1 - "no definite structural abnormality identified as source of the abnormal EEG". So, needless to say I am a bit confused as to what is going on with my child.
She complains of little headaches here and there. She did wake one morning feeling quite dizzy that she couldn't get out of bed and just layed there until it passed. Just the other night she came in and woke me at 1:15am complaining she can't sleep - first time she did that. She has still been getting that same burning feeling in her neck up to the crown of her head and her tongue feels like it curls, I don't know how often this happens because she just told me the other day - she wasn't telling me because she didn't want me to call the doctor.
So I am just awaiting our results and see what the dr has to say and go from there. I periodically research all the issues with the MRI for my own knowledge. I figured I would post our situation to share and see if anyone else has these experiences.
All of this came about because in May 08 she had a strange episode when outside playing - she said she felt this burning sensation in her neck that went up her head and it felt like someone grabbed her hair at the crown and pulled it and she couldn't move, her tounge felt like it curled back. This only lasted a few seconds. She was a bit dazed or scared, not sure which one. Well between this and the week before a new eye dr asking if I ever noticed her one pupil is larger than the other - no, I have never been told that before - and her complaining of headaches almost daily which she has never complained about before, I took her to the pediatrician who then sent me to the neuro. Neuro did an EEG in the office - he told me that showed a flucuation during the strobe light. He said could be migraines or seizure. He then wanted to do a 48 hour EEG. Results from the 48 hour EEG were - and I quote the dr - "intermittent slow activity at back of head, this is not normal". And because of this we did the MRI.
Radiologist states on MRI #1 - "no definite structural abnormality identified as source of the abnormal EEG". So, needless to say I am a bit confused as to what is going on with my child.
She complains of little headaches here and there. She did wake one morning feeling quite dizzy that she couldn't get out of bed and just layed there until it passed. Just the other night she came in and woke me at 1:15am complaining she can't sleep - first time she did that. She has still been getting that same burning feeling in her neck up to the crown of her head and her tongue feels like it curls, I don't know how often this happens because she just told me the other day - she wasn't telling me because she didn't want me to call the doctor.
So I am just awaiting our results and see what the dr has to say and go from there. I periodically research all the issues with the MRI for my own knowledge. I figured I would post our situation to share and see if anyone else has these experiences.
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Dear Lablover,
I was also diagnosed with a 9mm choroidal fissure syst and what I have found is most of the drs say its normal and nothing to worry about. The problem I have is I also have horrible headaches and one of my pupils is larger than the other lately! I do not have the tongue thing like your daughter but I would keep getting as much info as you can. I found a wondeful site called Arachnoid cyst awareness and you would be stunned at all the information they are putting together for the doctors. As well as just having others to turn to. You might google it and sign up its free and full of information.
Bless you,
Deneen Carleton
I was also diagnosed with a 9mm choroidal fissure syst and what I have found is most of the drs say its normal and nothing to worry about. The problem I have is I also have horrible headaches and one of my pupils is larger than the other lately! I do not have the tongue thing like your daughter but I would keep getting as much info as you can. I found a wondeful site called Arachnoid cyst awareness and you would be stunned at all the information they are putting together for the doctors. As well as just having others to turn to. You might google it and sign up its free and full of information.
Bless you,
Deneen Carleton
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My daughter Brooke is 13yrs old.she started with chronic sore throats then chronic sinusitis...her headpain..I call it headpain because it Never stops..she has had headpain for 9 months straight..now she cant be in the day light without those big glaucoma glasses..trouble reading and concentration...gained 40 lbs in 4months..chronic fatigue the list goes on and on....she spent 9 days in westchester medical childrens hospital...they told me she had a pineal cyst,,blah blah,,you know the story,,her thryoid was low so they are treating her hypothyroidism.....but in the mean time she has no life....barely 2 or 3 class..1 hr of tudoring is all she can stand.....my question is that the Neouro Dr. said he was concerned....that is is 14mm and it took the dye from enhancement....He said that usually means its a tumor..still we wait...doing another MRI to see any changes...Here she ls laying in her dark room with cold rags....her only confort......ps they also found a sack of fluid or fat behind the base of her neck,,,her neck in the front is swollen and so sore to the touch.....the blood test show she has had mono...epstein barr...micoplasma....that is pnemonia everywhere.....she is starting to tremor also......if it was your child what would you do?
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