Daughter with ARachnoid Cyst

[Shoot Em Straight 385]

Everything we think that is important melts away when your child is in pain...

Sorry to hear what is happening

Your title asks has anyone ever experienced this...I have not but since 18 I have dealt with a painful condition and only recently I have found (though it does not cure the problem) I get time to time...a full body MASSAGE or just Reflexology if she does not want her entire body touch. That helps relief with the "secondary" pain. Increased blood flow in the body detoxes the muscles that tense up from the initial problem.

Of course you must consult her doctor b 4 but, it might b good for her.

Maybe it can relieve some of the headache your daughter is enduring. And give her a little time to relax.

Good thoughts to you and your family.

[Darnell 8,478]

sorry yer going through this.

she can get some temporary pain relief through accupuncture. should last 3 days to 20 days at a time - i suggest it because one can do many things when not in pain - and it'll be cyclical till the doctors do something else.

has the surgeon suggest a 'skull cap removal' to get to the cysts, totally removing them? I know nothing about the recovery time for the skull cap bone to refuse, but has the doctor brought that up, yet? I dunno, though - if the 2nd cyst is around the optic nerve, that's totally different for location and subsequent removal.

[EAbbas 213]

Thank you for your ideas for help for her.. yes I'll look into both acupuncture and the massage.. Darnell.. How i wish it was removable but its a defect in the membrane that surrounds her brain so there is no way to remove it without creating possible problems for the brain...

I just pray we have some time so we can approach this in a very methodical way instead of leaping into such a dangerous surgery. The first surgery they actually removed the side of skull and went in but when they got into her head they realized it was nothing they could remove so they basically did a fenestration on it (poked holes in it so it drains slowly on it's own) She has been very stable for years until this new growth has appeared. Shunt is another option and then there are two more but due to the size, the cause, the fact she bled in surgery before is why they don't want to jump into doing something.

They put her on meds to reduce the swelling in her brain and the meds for headaches. I will start calling around to see about the acupuncture and massage.. if nothing else it would keep her comfortable.

Thanks guys!

[Darnell 8,478]

ah - in the entire membrane. a skull cap 'opening' procedure will never get it all. dreck.

sorry i missed that before.

[no, i'm not a doctor, nor do i play one on tv]

[EAbbas 213]

Here is a scan of her head... took out the identifying info but you can all see the white area is her cyst.. its filled with fluid thank GOD its not malignant or anything like that but its causing these issues that can easily create something just as bad... shes on medicine now to stop the swelling inside her head and two migraine meds. We pray this will at least stabilize her so she can get treatment in a well planned thought out way.

This was taken just two weeks ago

Edited June 4, 2012 by EAbbas

[Shoot Em Straight 385]

That is an incredible amount of space it takes over.

I really pray for her relief soon

Sorry. Mother to Mother my heart and good thoughts go out to you

Stay Strong

[EAbbas 213]

That is an incredible amount of space it takes over.

I really pray for her relief soon

Sorry. Mother to Mother my heart and good thoughts go out to you

Stay Strong

thank you! Just a quick update... she's on medication to reduce the swelling in her brain so when they go in the chance of her bleeding to death isn't as great. We are praying that this works and being able to take a slow methodical approach to any surgery is on our side!!!

[rade2rising 205]

thanks for the update dear. everyone thoughts and prayers are with you and your family.

keep us posted

[Operator 1,927]

How's the patient?

[Penny Lane 8,159]

I'm really sorry you're going through this. I can't imagine how difficult it must be to put on a brave face for your child in such a scary situation. I hope everything works out for the best and that your husband can join you soon.

Edited June 22, 2012 by Evylin

[EAbbas 213]

Thanks guys she seems to be doing pretty well she has good days and bad ones

Shes currently taking three meds and between them she's able to sit upright for much longer than an hour now without the violent migraines

She still has to lay down and rest and I have our neighbors constantly checking on her daily but at least she's reaponding some to the meds

She told me the other day she thought she would have to get used to always having a headache since it never ever ever goes away

We are just really buying time to get the swelling down and her stable enough for surgery I just keep praying that she will respond until we can make the right choice and not take a turn to create an emergency surgery

Edited June 22, 2012 by EAbbas

[rade2rising 205]

well keep trying and i hope your hubby will get through AP soon to help you

[me&him 2]

Hey Eabbas. Just checking on u and ur daughter. My prayers are with u. May Allah listen to ur prayers soon and ur daughter gets well and ur husband get his visa Inshallah. Stay strong.

[beejay 123]

She told me the other day she thought she would have to get used to always having a headache since it never ever ever goes away

I'm sure that was hard to hear but it sounds like you both are being very strong throughout this whole process and being there for each other. Does she ever use ice or cold packs on her head? Listening to 'books on tape' ('ebooks'?) might be an activity she could do if she is able to concentrate without having to worry about aggravating her head by staring at a screen. I know there are quite a few free radio play podcasts that could be good if she would be interested. This American Life from NPR has their weekly podcasts available to download or stream for free (sometimes those stories can be emotional though and she may not be in the mood).

Sending more healthy thoughts your way.

[evelyn1140 18]

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..

IS your daughter's father is abbyss? You have not talk to a congressman or senator? or send a letter to the ambassador in Pakistan. Sorry about all this, but you are a very strong woman. Don't give up.