We recently took our dd for testing at the NIH for connective tissue disorders. They did lots of testing, and we found out she has a 2mm brain aneurysm in the circle of Willis part of he brain. She also has narrowing at the entrance to her kidney where the blood flows into it. She doesn't have Marfan, or Ehlers Danlos, her disorder is an as of now unamed disease, but it is similar, in that the cellular glue is faulty.
Anyone have any experiences wih these problems?

How old is your DD?

She is 14 years old.

Wow, I'm so sorry your daughter is experiencing all this. How old is she?? I've had some experiences with aneurysms. My husband's aunt experienced one, my first cousin had one and a friend of mine 's young daughter had one. I don't want to alarm you, but you did ask about experiences. Aneurysms can be fatal or can cause paralysis. What did the doctor say about the aneurysm?

My friend's daughter was about 12 at the time. She came home from school saying she had a horrible headache, went to the refrigerator to get some ice to put on her head and passed out. She died that evening.

My cousin and my husband's aunt both had aneurysms but survived. Both experienced headaches and then the aneurysms burst. They were both paralyzed.

I've heard that you can live with an aneurysm all your life and never know you have one and never experience an episode.

As far as the other physical ailments you described, I really don't know anything about them. I would think if the doctors feel it's necessary, they would operate to remove the aneurysm. Please let us know how your daughter is doing.

First off I also am sorry you are going through this. My sister has a brain aneursym - hers is at the base of her brain on her carotid artery. It is 3.5 mm. The doctor said they could "watch" it - the chances of it bursting are greater when it reaches the 5-6 mm mark but they can burst at as little as 2 cm. She opted for treatement - they went up via the femoral artery and placed a stent and she goes back in 2 months for the rest of the procedure - the coiling - they were not able to do it all at once.

Find out all the options and get a second opinion if you are not comfortable. Please keep us updated. Sending positive thoughts your way.

The doctor told us to get MRIs every 3 months to see if it is growing. She can't do sports anymore, or contact games. She can't raise her blood pressure, or her heart rate.
It's really scaring me.

My freind was complaining about headaches and went to several drs. and had a lot of tests done. they all said nothing was wrong but she insisted there was. she was finally seen at the lahey clinic in Boston and they found the aneurism. They did sergury on her and she finally came back to normal after a loss of short term memory. She is fine now. Dont know what part pf the brain it was. Will pray for her. Carrie dont know where you were but welcome back!

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When you don`t know what to do-Walk fast and look worried.

a word of encouragement here.....everyone is different so don't go reacting/worrying based on others situations. My mother had a brain aneursym in January in the circle of willis of her brain. She spent two weeks in the ICU and it healed itself. No surgery...no coiling....nothing and she is perfectly fine today. Just get more than one opinion and go with what you feel comfortable with. I don't know where you live, but University Hospital in St Louis MO has the best ratings for treating brain aneursyms.....if you are close I would definitley go there.

I am so sorry.

Hugs and prayers,
Shirley

I am sorry for your dd illness. NIH is a great place and free from what I understand. Are you in the DC area? There are wonderful doctors in all areas of study. Also remember each person is different. My nephew had a problem about 10 years ago. All tests showed he had brain cancer. When they opened him up they found a blood clot in the back of his brain. He is perfectly fine now. He was 14 at the time.

She was in a connective tissue clinical study through the NIH. It was great, they did lots of tests, and gave advice at the end, all for free. My daughter really enjoyed it, and the dr. involved was awesome.
We luckily live near D.C, Philly, and Baltimore, so if we ever need a good dr. for this we have them nearby.
The dr. said to just watch it now, so I don't think I need another opinion yet, because we will find and get another point of view when she gets the next MRI.
She has some heart issues as well, that we learned more about, It was great to learn about these things, so we can takes measures to keep her healthy, but I wish, too that I didn't know, if that makes sense. UGH

Just want to say that i will pray for her recovery and that i am sorry she has these problems. I hope things resolve for her and that she has no problems.

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SAHM of Bailey 12, Tyler 9 , Emily Ann 5, and Ryan Matthew 4 yrs old.

Carljc, check your Private Messages. We just went down a very similar road with our child who also has a connective tissue disorder.