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coquina

Concerned about my daughter...

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I switched to a bigger candle. Thanks for keeping us posted, especially with your ISP problems.

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aye. Good luck and all. Im sure it will be fine, these things usually do turn out ok. :)

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Good luck, thinking of ya...

 

Looking forward for good news.

 

:)

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That's what my daughter has. It is not immediately life-threatening, but it is slowly leaking tiny amounts of blood and causing her to have mini-seizures. It is not in an area of the brain that is operable. The treatment her doc recommended is gamma knife radiation, but for now she is being treated with dilantin to stop the seizures.

 

Does anybody know anything about this problem? I'd like to know more about it and what kind of research is being conducted.

 

Thanks for all the prayers, good vibes, and candles.

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Just noticed the thread.

 

Thank goodness she's ok. Hope everything works out with the treatment.

 

Fingers crossed for you.

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Indeed :) Only just saw this thread, but glad that things are looking up.
Same here. Good to hear that the problem's not immediately life-threatening.

 

... treatment her doc recommended is gamma knife radiation' date=' but for now she is being treated with dilantin to stop the seizures.

 

Does anybody know anything about this problem? I'd like to know more about it and what kind of research is being conducted.[/quote']Cavernous Malformation Information

 

Some research on cavernous malformations in adults: http://64.233.161.104/search?q=cache:MTXLzJQinIMJ:www.thejns-net.org/jns/issues/v102n2/pdf/n1020342.pdf+Angio+Cavernous+Malformation&hl=en&client=firefox-a

 

Info about the 'gamma knife' procedure

 

Basic overview: http://www.hopkinsmedicine.org/radiosurgery/gammaknife/index.cfm

 

More detail about the procedure: http://www.umm.edu/features/gamma_knife.htm

 

The process the patient goes through: http://www.aurorahealthcare.org/services/gammaknife/procedure.asp

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Alex's husband called this morning. The situation is getting worse - she has severe vertigo and can't walk without getting sick. She sees another specialist tomorrow.

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My prayers and wishes are with you and Alex. The specialist is exactly what's needed.

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Your still on my mind and in my wishes. :-(

 

Bettina

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You have my deepest sympathy and I hope things turn out okay.

 

Cheers and good luck.

 

P.S.

Is she your only child?

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Goodluck with your meeting today.

 

My thoughts are with you.

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I'M sure it'll be fine and sorted by this afernoon, good luck anyway.

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You have my deepest sympathy and I hope things turn out okay.

 

Cheers and good luck.

 

P.S.

Is she your only child?

 

Yes, she is. Aside from one grandson, she is my only family. I have no siblings, my dad died in 97, my husband died in 2002, and my mom died 6 months later. It does make it tougher to deal with.

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I know what you mean.

 

Looking around the web I found the following http://www.medicalprogress.com/pdf_files/management_IVM.pdf

 

It seems to suggest that with modern techniques she has a very good chance(90-95%) of complete recovery(Table 3). I hope it's some comfort.

 

Husmusen.

 

Thanks so much for that link. I haven't had time to read the whole thing yet, will read in depth at lunch.

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Yes, she is. Aside from one grandson, she is my only family. I have no siblings, my dad died in 97, my husband died in 2002, and my mom died 6 months later. It does make it tougher to deal with.

 

dear coquina, this may be tactless or insensitive of me to say it but there is a "sociological" dimension to this.

 

virginians are traditionally very close with their kinfolk. My aunt, my mother's sister (they grew up in Bedford) attributed very great importance to actually blood relation and had difficulty bonding with anyone who was not her relative---even with inlaws she was not so close unless they were Bedford connections going back some.

 

my aunt, and indeed my mother as well, would never have been able to create a group of sympathetic friends over the INTERNET as you have done to a certain extent. things had to be face to face

 

the danger of this kind of dependence on direct family (as my aunt experienced) is that with the DECLINE OF FAMILY SIZE in the United States her circle of that she could form deep loyal relations with SHRUNK, so it did not work for her as well as it worked a generation earlier!

 

so in later life, my aunt had to get very creative and, in a sense ADOPT kinfolk. and so she cultivated a surrogate family of surrogate cousins and surrogate nephews and neices, in whom she became very interested and on whom she had a benign influence, on the whole.

 

So, though it may seem insensitive of me to say it, when you are having a very tough time with serious lifethreatening stuff, it looks to me that there is a secondary problem that nobody seems to notice-----your immediate family is just too darn small and always has been, and furthermore this problem is widely shared ( my own and my wife's immediate family is also too small and too scattered all over the country).

 

well maybe something to think about that more than one of us could think about, not you alone

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dear coquina' date=' this may be tactless or insensitive of me to say it but there is a "sociological" dimension to this.

 

 

So, though it may seem insensitive of me to say it, when you are having a very tough time with serious lifethreatening stuff, it looks to me that there is a secondary problem that nobody seems to notice-----[b']your immediate family is just too darn small and always has been[/b], and furthermore this problem is widely shared ( my own and my wife's immediate family is also too small and too scattered all over the country).

 

well maybe something to think about that more than one of us could think about, not you alone

 

Yeah, Martin - You're right. My mom and dad didn't have me until she was 42 and he was 40. Not for lack of trying, there were several still births. Aside from no siblings, I was never close to aunts and uncles and they have been dead for years.

 

My "family" consists of my employees, my neighbors, and my church family. All of those people have been very supportive of me. I do regard my internet friends with great regard as well. Especially here, where some folks have pointed me to some links which have been very enlightening.

 

My son-in-law just called - he's had to take her to the ER. She's having blinding headaches, nausea, and is totally disoriented. I'm waiting to hear what's to be done next, but unless they can do something to stabilize her, I expect to be taking my grandson to DC shortly.

 

I'm crazy with worry, but find this interactive fellowship distracting if nothing else.

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I don't know how to say this so I'll just say it......why aren't you there with her? I would be. If you were my mother, I would want you with me.

 

Bettina

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I don't know how to say this so I'll just say it......why aren't you there with her? I would be. If you were my mother' date=' I would want you with me.

 

Bettina[/quote']

 

Because her son, my grandson, is here. ( Her ex, who works for me, has custody - long story.) She said if she has to have surgery, she wants me to bring him up there. If we are playing a waiting game, she wants him to be here, in school. If her husband calls and tells me surgery is imminent, I will take him out of school and we will go to DC. Otherwise, we will wait til Friday PM or Sat AM. It only takes me between 3 and 4 hours to get there.

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The ER visit was due to too much dilantin. Her body couldn't handle the amount prescribed. My SIL called at 12:30 this morning and he was beat, so that's all I know for now.

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What a relief......I have been following this thread for a while.....staying on the sidelines (but praying nonetheless) because I am so new to this forum....isn't it wonderful to have such a diverse and interesting world family? Just wanted you to know I am pulling for you too....strength in numbers and all that.....

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