PINEAL CYST

HELP!  My 10 year old son was diagnosed today with a pineal cyst measuring 12mm. It states that the ventricles are non-dilated and symmetric. And that there is some mass effect upon the roof of the cereberal aqueduct. We are seeing a neurosurgeon next week.

[Dr Santos]

Hi,
How is your son? Were you able to see his neurosurgeon? A pineal cyst is a fluid-filled growth inside the pineal gland. This is usually benign in nature and asymptomatic. However, a cyst may enlarge and press on surrounding structures causing symptoms such as headaches and blurred vision. This  can be removed using surgery. Do keep us posted with your neurosurgeon consult. Take care always.

[teresascooby]

Thank you so much. We see a neursurgeon Thursday of next week. My son suffers from bad headaches, some vision problems, fatigue, feels like he needs to vomit but doesn't very often. I also have a 21 year old son that was diagnosed with Chiari I Malformation. My oldest is doing so much worse than my youngest. He has everything mentioned above but the symptoms are doubled and the vertigo is unbearable. The problem I'm having is that my little one is on the medicaid card and my oldest is being seen at University Medical Center of Lafayette Louisiana. UMC is pretty slow my son doesn't even have an apt. to see a neurologist every thing is in the process. I don't know if you're a parent but I'm feeling like I have to keep my kids in a bubble. It has to be the most challenging thing i've every had to deal with. But i'm keeping the faith. My question is why do both of my children have this? And my daughter also has frequent headaches and I've been suffering with headaches since i have been about 13. Right now I'm waiting on black mold and lead posioning test kits to come in because the has we live in has been flooded from Rita and because were fatigued and are having bad headaches i'm very concerned . Could it be possible? I did not know that the house was not properly cleaned. If you know of anything that could help us i can't tell you how much I would appreciate your help. Thank you Teresa

[19nineteen19]

GOD, I feel for you & your children.
I have NO idea what you're talkiong about with the diagnoses until Dr.Santos chipped in.
I can feel empathy toward your pain in dealing with your children's pain though...as my middle son has Neurofibromatosis..( dx when he was 2 1/2, he's now 24)
Dz with 3 brain tunors, as well as all the cafe au-lait spots all over his body & smaller growths along his abdomen & underarm area...
Learned by a very long MRI (seemed like it took HOURS) that he had 3 brain tumors...the largest the size of a nickel very close to his brain stem thzat could cause seizures, etc...this is all I knew about them because when his divorced father found out about his condition, he fought to get him on disability, and then went for custody.
Last thing I knew he was having seizures, was on medicatons, but the new stepmother didn't like that & made him find a job (he wasn't ABLE)!
He then got thrown out last summer, called me for the first time, came to live with me..found out he'd been OFF his disability for years, not seen a doctor since he was 16, his eyesight was very bad, and so was his behavior & attitude.
I HAD to let him go live with his father again & set up for a disability appointment before he left me, but he was never taken to it...
I know the pain & I also deal with the guilt too...it's not a very good feeling.
Good luck to you, teresa..I hope your appointment goes well..you are correct to say
the week wait feels like forever!
Been there...please keep us informed of what happens treatment, diagnoses-wise, ok?

[19nineteen19]

Sorry about my spelling errors!  I forgot to add that I've also had migraines since I was 11..no diagnoses but puberty!
When I started getting migraines, I also got panic attacks at the same time!
Terrible way to go through your teen years!

[Dr Santos]

Hi,
Thank you for your update. Being a parent also, I really understand what you are feeling right now.  If both of your kids have these symptoms, it could be that this is genetic in nature or they were exposed to something from the environment as they were growing up or even during the time they were inside your womb.  Talk to your doctor about this also. Hang on and always stay positive.

[Dr Santos]

How was your appointment with the neurosurgeon? Do keep us posted also. Take care always.

[teresascooby]

Hello Thank You for keeping in touch with me. Neurosurgeon apt. went well he wants a new Mri and an apt. with an opthamologist not sure how to spell it. And he also wants to see old Mri films. I could not bring them with me because the tech where it was done was out for the whole week. Hopefully I can get this done first thing  Monday morning so that I can bring them to the neurosurgeons office. He seems very compassionate and very understanding  which is so greatly appreciated. I'm hopeing to have all of this done within the next week. My little one had a real bad spell last night very bad headache and nausea I gave him a half of tylenol with codeine and he fell asleep . This is the only thing my family physician gave for the headaches. The bad thing is that the medicine puts him right to sleep and I don't like it. I want to make sure he doesn't have a headache. I felt so bad but after he fell asleep a while I woke him up just to make sure he was o.k. I wish I could take all of the pain my children are having. I will keep in touch. I know you are very busy and i truly appreciate you taking the time to talk with me. HAVE A BLESSED DAY! Teresa

[teresascooby]

Hello I'm sorry to hear about your son. You mention cafe a lait spots. My 21 year old also has this. His physician said nothing to worry about. It's very large in size and I'm not even sure what this is. My son is pretty sick he pretty much always has  a headache like my little one. But he vommits often has problems with his vision, cannot drive, cannot work, and stays home a whole lot. I try to get him out often but it gets frusturating for him because he can't take very much.Could you please tell me more about your son. I have though about getting him disabled and I'm really not sure where to start. I too suffer from headaches I can remember having them very young and they have gotten better since I have gotten my tubes tied. Don't get me wrong I still have them but they don't last for two days like they use too. I have changed my life style. Not much salt, try not to get stressed but thats really hard to do and I don't go in the heat I pretty much stay out of the sun. I also wear polarized glasses as soon as I get out of the house my glasses go on rain or shine. Believe it or not this does help me. I just try to keep the faith. Also i live one day at a time. I've never did this before I always planned for the week ahead or the month ahead. Now its just one day at a time sweet Jesus. Hope to talk soon. Thanks Teresa

[Dr Santos]

Hi Teresa,
How are you? A new MRI would indeed be very helpful especially if this is compared to the previous MRI results.  Ice packs, rest and lots of hug will also help. Some side effects of these  medications include drowsiness which also helps somehow. If you are not comfortable with these though, inform your doctor so he can change it to another medicine. Take care and best regards.

[donjoe341]

Have your children checked for lyme disease by a lyme specialist. You should rule this out as a cause of your children's conditions. You can go to ILADS.org and it will give you information and symptoms of this disease. If you decide to go this route and need help finding a lyme specialist let me know. I pray you find answers soon.

[alvarez89]

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