Daughter with ARachnoid Cyst

[EAbbas 213]

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..

[Penguin_ie 5,984]

I am so sorry, that must be incredibly hard for you and your family *hugs*

[EAbbas 213]

I am so sorry, that must be incredibly hard for you and your family *hugs*

It's so very hard... thanks for the hugs.. but I also embrace this as my life and I will face this head on like any mother would... but it would be easier if I could have my husband here to support us.. and tell me its ok.. but he's totally 100% involved even at the distance.. I will manage to get thru this and my daughter will get the care she needs... just wish it wasn't happening with the AP involved.

[Ryan H 3,790]

Sorry to hear this. Sending good thoughts and hopes that the AP on your husband's case will finally be over with soon.

[EAbbas 213]

Sorry to hear this. Sending good thoughts and hopes that the AP on your husband's case will finally be over with soon.

Thanks Ryan for the good thoughts .. we will get there one day...

[PalestineMyHeart 1,897]

I am so very sorry to hear of your daughter's health issues. My prayers for her, and for you and all your family - God with you all, and may she recover quickly. And may you be reunited with your husband very soon.

- MK

[Operator 1,925]

So sorry to hear about this. We are fortunate to have some of the best Doc's in the world in here in NC, hang in there.

Wish all three of you luck.

[EAbbas 213]

I am so very sorry to hear of your daughter's health issues. My prayers for her, and for you and all your family - God with you all, and may she recover quickly. And may you be reunited with your husband very soon.

- MK

Thank you... Inshallah things will work out soon and she will heal quickly...

[EAbbas 213]

So sorry to hear about this. We are fortunate to have some of the best Doc's in the world in here in NC, hang in there.

Wish all three of you luck.

You know.. God knows what he's doing when he puts us in places.... when she had her surgery in alabama the best neurosurgeon in the country was there.. and was supervising her case.. and now here we are in NC.. my mother lives just around the corner from the hospital where she will be seen and its the place they life flight all brain trauma patients in NC... so you are so right... she will be getting the best treatment here that NC has to offer

thank you!

[rade2rising 205]

well try your best to hang in there and keep your best smile on for your daughter's sake. Everything will work out.

[EAbbas 213]

well try your best to hang in there and keep your best smile on for your daughter's sake. Everything will work out.

Yeah... that's all I can do... thanks!

Edited May 26, 2012 by EAbbas

[EAbbas 213]

Diagnosis today far worse than we expected she doesnt have one but two cysts now.. the new one is pressing against her optic nerves so we are having an urgent appt tomorrow instead of middle of june with a neurosurgeon. I pray we have some good news but knowing now wht it is i fear we will have a surgery in the very near future.. and right now im feeling the immigration process is failing our family. My husband should be here by my side and as a wife and mother i need his support and his comfort as we both watch our daughter struggle thru this. This is scary and its more than serious and its unfair and yeah im complaining but my GOD it's been a year since his interview... I just REALLY NEED HIM HOME!!!!

[engineer21 51]

I'm so sorry to hear this! (F)

Hang in there.. May you find enough strength for you and your daughter.

[rade2rising 205]

my prayers are with you and your daughter in this trying time

as for the immigration process well how patient can one be? inshallah your hubby will get through soon

[beejay 123]

Sending positive and healthy thoughts for your daughter and wishing you strength to be there for her. I hope AP will end soon for your husband so that he can help you and your daughter through this too.