Daughter with ARachnoid Cyst

[Gumbolette 58]

To Mods... if this isn't in the right place feel free to move this thread...

ANd im very sorry this is long..

My daughter was born with an arachnoid cyst in her brain. It's a defect of the lining of her brain and filled with fluid. they did brain surgery when she was 18 months old to see what they could do to fix the situation. Since it's the membrane that lines the brain they couldn't remove it. It took up 33% of her brain cavity at this time. They fixed it so it drained on it's own without a shunt. She did well even tho they gave us a 50/50 chance she would make it thru the surgery.

She has been stable for years.

Fast forward to now.. she has always had issues with short term memory loss and ADHD. Neurologists didn't know if it was due to the cyst or the genetic make up of ADHD but they always said they felt it was the cyst. She always struggled in school and was on a 504 plan to help with her learning disabilities. She never was a straight A student but she didn't fail either... with hard work she did pretty well and was an average kid... making between B and D's...

The last two months her grades started slipping and she started showing signs of dizziness on occasion. She began suffering headaches so I took her to the Dr who said to chart the headaches and they wanted to see if it was associated with hormones(as she is a young teen) or allergy related (here in NC pollen is really bad) or Migraines due to hereditary reasons as I also suffer some from this. So we began charting and as the days passed I kept looking and there was NOT a day that went by that she didn't heave a headache. She took ibuprofen 600 mg and exedrin Migraine but nothing helped. The last two weeks the headaches began to get really intense and she was staying at home from time to time from school.

this past monday she was out of school and went Tuesday but still had such pain when she came home. I had already scheduled a follow up appt with the dr for this past Thursday so we were just buying time until we saw the Dr....

Wednesday morning came and she went to school and as soon as I opened my teller drawer and did the first night drop she called crying she was really sick with another bad headache. I stopped what I was doing and locked up and went and got her from school and brought her to my office and she laid down in our conference room in the dark to try to sleep. I was planning on taking her home during lunch to put her to bed and of cos the next day was our appt.

As i was working i heard a blood curdling scream making my hair stand up the back of my neck.. i ran to see and she ws in such intense pain we went right then to the Dr. They ruled out the allergy issues and the migraine issues and put her on two kinds of migraine meds to control the pain and sent her directly for an emergency MRI. She was given a note from the Dr saying she would not be coming back to school.. so she's out for the rest of the year...

MRI showed her cyst was 10x12 cm large and they don't know if it's gotten bigger and just not draining or what quite yet... they are getting all her records together from her nuerosurgeon who did the initial surgery and follow up papers and sending us to Baptist hosptial in NC (well known for brain trauma) to get a pediatric neurosurgeon here to look at her to see what to do.

I have been told it could be headaches associated with tumors/cysts/growths of some kind in the brain.. (would be nice if that's all it is) but i fear the fact she's dizzy all the time, the meds do NOT stop the pain only make it tolerable.. (with two meds she should be knocked off her butt and sleeping) that it's the cyst creating the problem. There would be a couple of options of course... could they redrain it again so no need for a shunt.. or would they just place a shunt.. which I don't want but if that's what helps save her then i don't care what they have to do. However I will keep my positive outlook that NOTHING is going on with the cyst and we can get her treated without invasive measures!!!

Anybody experience having anything similar? or a shunt placed? I'm scared... i wont' lie to her either.. altho im not saying EVERYTHING in detail to her... i don't believe in sugar coating something to my children when something else could be there.. then they would think i failed them and lied to them. She understands the seriousness of the issue but we are all trying to find the positive from this...

And of course.. we are doing all this with my husband still in the AP abyss... needless to say im rambling but my emotions are wired and im hurting for my daughter and for my husband to be here to lean on..

Just need a little support..

Im terribly sorry for your daughter's condition so as the pain you are feeling right now.

Coming from a nurse's perspective, I had a patient before sounds similar to your daughter's condition.. I am just not sure where the your daughter's cyst is since the brain has 3 membranes. the inner most lining which adheres to the brain is called the pia matter, middle layer is called arachnoid and the outer most layer is the dura matter. Regadless of where the cyst is you have mention that she has "draining problems" and this patient of mine did have a stent which drains the fluid from her brain to her abdomen so the body can re -absorb it. It was quite a process though. We are talking a teenager here, and so far the stent is doing its job though we can't foresee how long.

Nevertheless, whatever the doctors' decide and whatever interventions they presented to you, always keep in mind that in the end of the day; always keep your daughter comfortable.

I will say a prayer for her wellness and for your family. Stay strong.

Edited July 23, 2012 by Cutie_Patootie

[EAbbas 213]

Im terribly sorry for your daughter's condition so as the pain you are feeling right now.

Coming from a nurse's perspective, I had a patient before sounds similar to your daughter's condition.. I am just not sure where the your daughter's cyst is since the brain has 3 membranes. the inner most lining which adheres to the brain is called the pia matter, middle layer is called arachnoid and the outer most layer is the dura matter. Regadless of where the cyst is you have mention that she has "draining problems" and this patient of mine did have a stent which drains the fluid from her brain to her abdomen so the body can re -absorb it. It was quite a process though. We are talking a teenager here, and so far the stent is doing its job though we can't foresee how long.

Nevertheless, whatever the doctors' decide and whatever interventions they presented to you, always keep in mind that in the end of the day; always keep your daughter comfortable.

I will say a prayer for her wellness and for your family. Stay strong.

Thank you for your kind words... yes you are right my daughter is most important in all of this and her health is all that matters. So far shes comfortable and the medication has reduced the swelling and her headaches arent nearly as bad. This will give us time to be able to make the right decision if we have to make one. Thank you for understanding what we are going thru.. its painful enough to be stuck in AP for over a year waiting on my husband but its so much worse to see my daughter suffering. I can't leave her knowing any minute things can change so for now our lives are hanging in the balance.... just waiting for the day her health improves or we can make a good decision on the surgery she may require and waiting for the day that my husband can come home and stand beside me and be of comfort and support thru this terrible part of our lives.