wierd docs appointment...

[lolathechecker]

so my doctor just told me that my baby doesnt have hydrocephalus. its ventricular something or other. he said that her head isnt enlarged, so its not technically hydrocephalus. huh? does anyone know anything about this?:confused:

[angel]

Your baby has SB? I know most people with SB have hydorcephalus I never had it. I have never had a shunt (knock on wood)

[StrictNon-Conformist]

If I'm not mistaken, there's something abbreviated NPH: Normal Pressure Hydrocephalus, which does not always have the head be larger than normal.

Also, what's to say that they wouldn't be genetically predisposed to having a small head before other outside influences caused it to be normal-sized???

[Dodger67]

I have a big head - but it runs in the family.
My pressure was a bit high when I was born but it came down to normal within a day or 2, so I don't have HC.

[lolathechecker]

Also, what's to say that they wouldn't be genetically predisposed to having a small head before other outside influences caused it to be normal-sized???

thats a funny thought... theres actually a condition called microcephaly which is a small head.

[Spokie]

Keep a close look, just to be on the safe side. My son's head was normal size until about a month after birth. He got his shunt two months after birth.

[mommy2cnj]

I agree with Spokie...keep a close look. Learn the signs/symptoms of HC so you're familiar with. If the babe does not have HC, all the better. Arm yourself with knowledge so you're in the know.

[lolathechecker]

they are still going to shunt her. her ventricles are enlarged. and i think they're doing it as a safeguard, incase it gets worse.

[mommy2cnj]

I know that has to be tough, emotionally, but stay strong!
Hugsssssssss

[Spokie]

Good Luck! Hang in there!!

[Barb]

I actually think that this pretty common in an unborn baby because right now the CSF has an escape route. Once the myelo is closed hydro can build up quickly.

[lolathechecker]

I actually think that this pretty common in an unborn baby because right now the CSF has an escape route. Once the myelo is closed hydro can build up quickly.

yeah, i think thats why they are going ahead and doing the vp shunt as soon as shes born. im not too worried about it. i have a feeling shes going to be fine. my doctor seems to have her best interest in mind and hes been good about listening to me.:)

[Michelle]

so my doctor just told me that my baby doesnt have hydrocephalus. its ventricular something or other. he said that her head isnt enlarged, so its not technically hydrocephalus. huh? does anyone know anything about this?:confused:

My son is 5 weeks and has "ventriculogmegaly" (SP?) but not hydrocephalus. It just means that his ventricles are mildly enlarged but not considered hydrocephelus. I believe if the ventricles are >14 mm it is considered hydro. Jack's are about 10. When he was born his we're moderately enlarged & actually got smaller. So just keep that in mind when they're doing your ultrasounds...i used to ask the u/s tech what his vents measured just to keep an eye on them myself..that way I knew what to expect when he was born...would he definitely be shunted? So as of right now we're not, and that could change, but so far so good. How are you feeling?

[kali]

my son when he was born had no signs of hydrocephalus, he stayed two weeks after the closure of the bifida without. Then it all changed. he had a shunt put in within the week. its strange,I remember noticing a change in his eyes, thats what allerted me to the hydrocephalus. did anyone else notice this?
my son is 9 years old now and we havent had any problems yet with the shunt, knock on wood... things will be fine lolathechecker, huggsss hugggss and more hugggsss

[mommy2cnj]

Any particular change? Such as movement back and forth or like a twitching? (aka nystagmus....sp?!) That's one of my daughter's huge symptoms when her shunt fails. Her symptoms can be one thing one time and something completely different another (9 revisions). I took her in once and she had vomiting as a symptom. The next time, due to no vomiting, the NS office told me it was not her shunt; I took her into the ER anyway and sure enough, another revision *sighs*. For my tike, the normal is abnormal. One time, she had NO symptoms, but a routine CT showed she needed a revision. HC seems to always throw us for a loop, but I guess that's all the more reason to stay on your toes. :)

[lolathechecker]

My son is 5 weeks and has "ventriculogmegaly" (SP?) but not hydrocephalus.

thats what the doctor called it. i couldnt remember the word the other day. but im definately tired of being pregnant now. they decided to do the c-section on april 4th, so im counting down now!:o

[Michelle]

I too, was so uncomfortable during the last few months. Good luck and hang in there!

[kali]

we are here for you if and when you need us...hugggs, I always had a hard time during pregnacy too ...hugggssss

[angel]

I agree with everyone keep a close eye out. I am 30 years old i have never had a shunt never needed one but as they all say it could all change at any time. When i had headache's as a child and teen (i just have them migranes tend to run in the family) i was getting a CT scan because it was a possibility. I still am cautious if i don't feel like something is right and i am diagnosed as needing one then i will get one.

[StrictNon-Conformist]

Hi angel,

I'm curious about the nature of the headaches: I lost a whole week of ninth grade due to a nasty headache where I could feel every beat of my heart, combined with severe vertigo, such that it literally seemed I couldn't see in a straight line. My parents didn't have much in the way of insurance at the time, and I didn't see a doctor, and it was figured that was what was going on, though. Oddly enough, I don't remember ever puking, but as bad as junior high school was, I would have far preferred to have been in shape to attend school, as nothing my parents had in the house seemed to do anything. Then, about as suddenly as it came on, it stopped, I think while I was sleeping (I wasn't really able to sleep properly, but that was the closest thing to an escape). To this day, I don't know exactly what I was experiencing: a migraine, a special type with vertigo (can't think of the name I found) or what, but... I've not had a headache anywhere near that duration and intensity since then, and hope I never do again.

[Dodger67]

Sounds like a classic migraine to me!

Been there, done that....

[kali]

my son last year had a horrible headache that lasted a whole month. he also complained of neck pain and had a hard time moving it. it was so hard watching him and not knowing what to do. we had every thing checked out, wasnt the shunt , in the end I was told to massage his neck with warm olive oil. He also had a bladder infection at the time, so I wonderling if it was connected.

[angel]

I had my first one when i was 11 it lasted for a week and no meds would touch it. As you said it stopped as suddenly as it started. I went to a neuro and they did a ct scan and nothing was wrong i was perfectly fine. As i grew up i got what are called cluster migranes. They only happen maybe once or twice a year. I get a migrane it comes on very suddenly and makes me sick. After i throw ( i am sorry i know that was gross) it takes seconds for it to completly disappear. Sometimes it takes hours for it to get to the point where i actually get sick to my stomach. The reason they call them clusters is because i always have another one a few minutes to a few hours later. My grandfather also had these headaches he called them sick headaches. My grandmother said that they stopped after he had a heart attack. I will just live with them if a heart attack is the cure!!!!!

[kali]

could it be connected to the chiari malformation, not too knowlegable about this either but I have read that everyone with sb has some form of chiari m. as for these headaches if yours were like my sons, I pray you both never experience another one...hugggsss

[angel]

If we all have a form of that malformation (i don't know how to spell it) then i didn't know. I never even heard of it until last year. I am still not quite sure what it is. I suppose that i should look it up.
Thanks Kali you are a doll!!

[Dodger67]

Everyone with Hydrocephalus has some Chiari - so not necessarily linked to SB as such.
I have SB (L1-2), don't have HC, don't have Chiari Malformation, don't have Tethered Chord

[angel]

i may not have it then because i don't have hydro. I was told by my son's neuro that by definition i have a tethered cord. I don't know if his definition is correct but it hasn't given me any problems if i do.

[Dodger67]

As I understand it Chiari is caused by the high cranial pressure actually squeezing the part of the brain that is just inside the skull (brainstem area) - the cerebellar tonsils - outwards through the foramen magnum - think of it as the brain being squeezed down your neck!:eek: obviously its a very slight "shift" otherwise you'd be dead, but it has potentially serious consequences. See http://en.wikipedia.org/wiki/Chiari_malformation

[lolathechecker]

i was confused about chiari, so when i saw the neonatologist yesterday he did a really good job explaining it to me. he sain that everyone has an opening in the back of the spine where the spinal cord connects to the brain stem. he said there are two pieces there (one from the skull and one from the spine) that keep the brain in place. he said that when babies are born with the chiari malformation that the opening is bigger and the brain has a tendancy to slide back into the open area. he told me that in severe cases they can fuse the plates together to keep the brain from going too far. but he said it wasnt an option most doctors liked because it makes it hard for you to move your neck. atleast, thats what i got out of the conversation. hope that helps.

[kali]

When my son was younger I was told his tonsils were lower then is normal. he was always vomiting, and complaining of a stiff neck. When I mentioned this to a doctor he said this was probably because of chiari malformation. thank God he out grew all of this as he got older. and I havent seen any kind of symtons except last year when he had a painful neck and month long headache. I am going to read up on this! if I find anything I will let everyone know

[Barb]

C's chiari was/is pretty severe. He had a decompression for it around three years old. It really helped with the csf flow, vomitting and speech issue that he was having. It is an ugly surgery though.

[mommy2cnj]

i was confused about chiari, so when i saw the neonatologist yesterday he did a really good job explaining it to me. he sain that everyone has an opening in the back of the spine where the spinal cord connects to the brain stem. he said there are two pieces there (one from the skull and one from the spine) that keep the brain in place. he said that when babies are born with the chiari malformation that the opening is bigger and the brain has a tendancy to slide back into the open area. he told me that in severe cases they can fuse the plates together to keep the brain from going too far. but he said it wasnt an option most doctors liked because it makes it hard for you to move your neck. atleast, thats what i got out of the conversation. hope that helps.

That is the best way I have EVER heard CMII described. Kudos to the doc!! And lest I forget, kudos to you as well, Lola!! Either you have one heck of a taking-notes skill OR you have one heck of a brain!! Judging by your posts, I'd choose the latter!! :D

[kali]

just read that headaches and a stiff neck could be related to chiari, but it could also be related to shunt problems, just as I thought....:D

[lolathechecker]

That is the best way I have EVER heard CMII described. Kudos to the doc!! And lest I forget, kudos to you as well, Lola!! Either you have one heck of a taking-notes skill OR you have one heck of a brain!! Judging by your posts, I'd choose the latter!! :D

hey thanks! its funny, because birth defects and genetics have always interested me, so i started school to be a doctor in 2005. but i decided to change my major and get into research science instead. i soak up information on birth defects, stem cells, trauma neurology, and the heart. my mom is a heart nurse, they are looking into a new procedure that uses stem cells to repair heart damage. im starting to wonder what these cells can do for nerve damage, im thinking they can be used to repair small damages and restore even a small amount of sensation. if we could, it could do wonders for people who can walk, but have no feeling in their feet. it would make walking safer for them.