help

[lanceblakemom]

My son (who turned 6 on new years day) was just found to have (also on new years day) what the doctors think is an arachnoid cyst. We have seen the head of neurosurgery at CHOP Dr. Leslie Sutton, he wants us to see a neurologist (we are seeing Dr. Yonkin at CHOP tomorrow) and a pediatice opthamologist, to rule out other possible problems that may be causing my sons symptoms (head aches and very sharp pains when he runs in his eye). We are so distraught, this really does not feel real...do any of you have experience with this? Do you know anything about the Doctors I have mentioned? We have also spoken by phone with Dr. Keating from childrens national medical center in DC. We have a second opinion set up with the head of neurosurgery at Dupont (I cannot remember his name)...any advise?
ALicia

[LIZARD]

((((((((((Alicia))))))))))).

You're doing all the right things. :) I don't understand, though, why you're being sent to a neuro for something that's clearly a nsg issue. :confused: (I'm a lifelong neurosurgery patient and have learned this first-hand.)

Good luck with the second opinion. There's an arachnoid cyst forum here, too: http://brain.hastypastry.net/forums/forumdisplay.php?f=90. It doesn't look real busy, but maybe someone can help.

LIZARD :)

[Mayzoo]

my sweetie girl has an Arachnoid Cyst right CPA angle--her Nuerologist has been worthless in this regard. The Neurosurgeon is keeping an eye on it for mass change, signal change, and growth change---all of which might lead to surgery. To my knowledge two different surgeries are tried, if surgery is needed, depending on the cyst location and size. Fenestration---draining by needle or scalpel, or shunting. I have heard of some medication regimens that the jury is still out on.

Good luck and if I can help let me know by PM---I have some really good links.

[Rozia]

what is CHOP???

[LIZARD]

what is CHOP???

Children's Hosp of Philadelphia, I think. :)


LIZARD :)

[lanceblakemom]

Thanks to all that have responded. I just got back from dropping
Blake off at school. The neurologist that we saw this morning, Dr.
Yonkin, at CHOP was great. He did a complete neurological exam on
BLake and he said that he could not find one thing wrong with him.
While we are STILL WAITING for the actual report of the MRI, Dr.
Yonkin look a the MRI and said that he is certain that this is indeed
a subarachnoid cyst (totally begnine (OK< I have no idea how to spell
that!!) He echoed what DR. Sutton and DR. Keating said, that he does
not think that this cyst is causing Blake's eye pain (which I may
mention has not happened in the last couple of days) He thinks that
we should see the pediatric opthimologist (which we have an
appointment with next monday) and just keep an eye on Blake. If he
has more problems we are to keep track of them and then they will
take the appropriate steps (possibly surgery) All of the doctors
that we have spoken with have said the same thing, the 1-4% of the
population have these cysts and they are ususally found by accident,
just like BLake's. They have also said that even though Blake's is
very large (no one will tell us exactly how big it is, but we have
seen it in scans) that size does not matter, what matters is
pressure. They all think that he has had this since birth (because
his skull bone is kind of dented in from it) and that in the area of
the brain that it is located (near the motor region) the symptoms we
would be seeing (if indeed the cyst was causing a problem) are
weakness on the left side and uncoordination (which Blake does not
even come close to having) So, really we feel very good about this,
and we are just hoping that Blake has no more symptoms (he was having
mild headaches and the eye pain when he ran). I guess we will just
have to wait and see...
I will say that it is very hard to do this, because everytime that he
pumps into something, falls, bangs his head... your heart just
leaps...I guess we will just have to get used to this!!
Thanks for all the PVs
ALicia

[mcgelb]

Alysia--my husband and I are in the same boat with our 7-yr-old (lemon-sized, Sylvian Fissure). Have been quite distraught. He's had MRIs, PET scan, CAT scan etc. Husband thinks decompression surgery is the way to go. I'm terrified of that. Heard Dr. Keating is the best at Children's. We saw Myseros there--he was excellent. We want to get a 3rd opinion from Hopkins. Take Care. Mareekah.