Re: Maysa's bump is most likely a dermoid

[Guest guest]

Hey Leila-

I didn't get a chance to respond to you yesterday...it's good to be

back in the loop...the holidays took a lot of my time and it's amazing

how easy it is to stay away from the computer when you don't have to

work.

I just have to comment on the arrogence of neurosurgeons. I think it's

a prerequisite or something, because the one we saw when Jake was 4

months old was the same way. He barely rubbed his hand over Jake's

head and said it would be fine, helmets didn't do anything that nature

and time wouldn't take care of down the road. And I believed him,

which still kills me to this day. In any case, at least you got some

sort of answer regarding the cyst. I don't think a cat scan could

hurt. Let us know what you decide.

Jake-2 (DOCBand Grad 9/08)

Jordan-4.5

>

>

> I've posted an entry on her blog for those interested in finding out

what the neurosurgeon had to say about Maysa's bump on the back of her

head.

>  

> Leila

> Maysa, 11m 3w, 9 weeks in DOC band + CST

> http://mymaysa.wordpress.com/

>

[Guest guest]

We went to a craniofacial plastic surgeon. She's the head of the department at the Detroit Children's Hospital. Arrogant, yes, but very pro banding. I've learned that generally neurosurgeons aren't as they are concerned with the brain itself and if the skull's miss shape is not bad enough to effect it, they consider any correction purley cosmetic. Plastic surgeons on the other hand are very aware of the necessary aspects to the reshaping for both physical (like jaw issues) and emotional (cosmetic) reasons.

As for the dermoid. Get it removed. It's a slow growing tumor/cyst so it will always get larger and in time will cause problems. Elaine was born with one on the side of her head the size of a pea and had it removed at ~6mos old. When we first saw the surgeon she told us it would be operated on. Just like that. No explanation just that we were scheduling a surgery. I freaked out a bit. After all this was a plastic surgeon, she must be more concerned about looks and my baby's skull doesn't need operated on, right? I did a lot of research and learned she was right and it really needed to go.

Here's the good news. It's harder on you than on them, and the operation is outpatient. It's a really quick procedure and the after math is not even close to what I imagined. In fact the bandage from the IV was larger than her bandage on her head. The down side is after the surgery they aren't allowed to wear the helmet for ~2 weeks. So you could need some major readjusting when she gets back in it.

http://img205.imageshack.us/img205/8149/1000812srw8.jpg <-- home from the hospital maybe an hour and here's where they removed it.

If you have any questions about my experience, don't hesitate to ask.

Elaine (twin A), plagio & tort, 7mos 1 week in helmet #2

On Thu, Jan 8, 2009 at 5:22 PM, <nwilkens2275@...> wrote:

Hey Leila-I didn't get a chance to respond to you yesterday...it's good to be back in the loop...the holidays took a lot of my time and it's amazing how easy it is to stay away from the computer when you don't have to

work. I just have to comment on the arrogence of neurosurgeons. I think it's a prerequisite or something, because the one we saw when Jake was 4 months old was the same way. He barely rubbed his hand over Jake's

head and said it would be fine, helmets didn't do anything that nature and time wouldn't take care of down the road. And I believed him, which still kills me to this day. In any case, at least you got some

sort of answer regarding the cyst. I don't think a cat scan could hurt. Let us know what you decide. Jake-2 (DOCBand Grad 9/08)Jordan-4.5 >> > I've posted an entry on her blog for those interested in finding out

what the neurosurgeon had to say about Maysa's bump on the back of her head.> > Leila> Maysa, 11m 3w, 9 weeks in DOC band + CST> http://mymaysa.wordpress.com/

>

[Guest guest]

,

Thank you so much for your email! Finally someone who has gone through the same experience. I looked at your daughter's pictures and Maysa's dermoid is the size of the white bandage that covers your daughters spot. I want it removed too, but I am worried about the CAT scan. Did your daughter get a CAT scan?

I hate to see her two weeks without the band on. She will be 1 year old next week, but then again being in a band with a dermoid sticking out that much could actually prevent her occipital bone from growing out or could push the dermoid even more into her skull bone.

Waiting to hear from you and anybody who had their child take a CAT Scan.

Leila,

Maysa, 11m 3w, 10 weeks in DOC band + CST

http://mymaysa.wordpress.com/ --- On Fri, 1/9/09, Lina Gabriev <lina.gabriev@...> wrote:

From: Lina Gabriev <lina.gabriev@...>Subject: Re: Re: Maysa's bump is most likely a dermoidPlagiocephaly Date: Friday, January 9, 2009, 8:50 AM

We went to a craniofacial plastic surgeon. She's the head of the department at the Detroit Children's Hospital. Arrogant, yes, but very pro banding. I've learned that generally neurosurgeons aren't as they are concerned with the brain itself and if the skull's miss shape is not bad enough to effect it, they consider any correction purley cosmetic. Plastic surgeons on the other hand are very aware of the necessary aspects to the reshaping for both physical (like jaw issues) and emotional (cosmetic) reasons.

As for the dermoid. Get it removed. It's a slow growing tumor/cyst so it will always get larger and in time will cause problems. Elaine was born with one on the side of her head the size of a pea and had it removed at ~6mos old. When we first saw the surgeon she told us it would be operated on. Just like that. No explanation just that we were scheduling a surgery. I freaked out a bit. After all this was a plastic surgeon, she must be more concerned about looks and my baby's skull doesn't need operated on, right? I did a lot of research and learned she was right and it really needed to go.

Here's the good news. It's harder on you than on them, and the operation is outpatient. It's a really quick procedure and the after math is not even close to what I imagined. In fact the bandage from the IV was larger than her bandage on her head. The down side is after the surgery they aren't allowed to wear the helmet for ~2 weeks. So you could need some major readjusting when she gets back in it.

http://img205. imageshack. us/img205/ 8149/1000812srw8 .jpg <-- home from the hospital maybe an hour and here's where they removed it.

If you have any questions about my experience, don't hesitate to ask.

Elaine (twin A), plagio & tort, 7mos 1 week in helmet #2

On Thu, Jan 8, 2009 at 5:22 PM, <nwilkens2275> wrote:

Hey Leila-I didn't get a chance to respond to you yesterday... it's good to be back in the loop...the holidays took a lot of my time and it's amazing how easy it is to stay away from the computer when you don't have to work. I just have to comment on the arrogence of neurosurgeons. I think it's a prerequisite or something, because the one we saw when Jake was 4 months old was the same way. He barely rubbed his hand over Jake's head and said it would be fine, helmets didn't do anything that nature and time wouldn't take care of down the road. And I believed him, which still kills me to this day. In any case, at least you got some sort of answer regarding the cyst. I don't think a cat scan could hurt. Let us know what you decide. Jake-2 (DOCBand Grad 9/08)Jordan-4.5 >> > I've posted an entry on her blog for those interested in finding out what the neurosurgeon had to say about Maysa's bump on the back of her head.> > Leila> Maysa, 11m 3w, 9 weeks in DOC band + CST> http://mymaysa. wordpress. com/>

[Guest guest]

We did X-rays first and depending on the results a CAT scan would have been recommended. The X-rays were enough to show where the dermoid was (of course they don't know 100% until they remove it that's what it is) but they were confidant from the X-rays and didn't suggest the further scan. We did the X rays at just under 3 months and it was rough because of the strapping down.

She had an upper GI about the same time and the not eating was rough. Just have them schedule it in the morning if they require no foods for x hours. Then you can wake her up and feed her at the last minute, then she'll sleep through most of the not eating.

I'm not sure how much the helmet effects it for the negative though. It could have been due to her age and wanting to wait until she was 6mos before the operation, but the surgeon wanted her in her first helmet ~2 months before she scheduled the surgery. Elaine got her first helmet ~4 1/2 months, and had her operation at ~6 1/2 months (6mos 10 days). I would assume over time it would cause it to grow more wide instead of out? Not sure if it would force the growth inward? That would be a question for a doctor. I didn't bother asking as I knew removal was right around the corner and it's a slow growing thing.

As for being out of the helmet, at least being older you won't loose as much growth time. For Elaine she grew right out of hers, and then had to get a new one, so we lost almost a month of growth. I didn't like it, but she's still on the young end yet so hopefully it won't matter much by the time we get to the end results.

As for the size, I'd say it looked about the size of a lima bean when it was removed. I did notice it was flattening out so to speak at least on the surface. Had we waited until she was a year, I bet it would be somewhere close to knuckle size as well.

Elaine (twin A), plagio & tort, 7mos 1 week in helmet #2

On Fri, Jan 9, 2009 at 10:06 AM, <nwilkens2275@...> wrote:

Jake had a CT scan when he was 3 months old. It wasn't bad at all. Actually, the hardest part was having to have him fast for like 8 hours before the scan because they thought he'd have to be sedated.

For a 3 month old, 8 hours is like an eternity not to eat, but he held up ok. In the end, they said they would try to get the scan once without sedating him. We had to strap and hold him down but we got it on the first try and skipped sedation which I was really

happy about. I'm not sure if all techs would try it that way or not, but it's worth asking. The scan itself took like 5 seconds.

Jake-2 (DOCBand Grad 9/08)Jordan-4.5> >> > > > I've posted an entry on her blog for those interested in finding out > what the neurosurgeon had to say about Maysa's bump on the back of

her > head.> > > > Leila> > Maysa, 11m 3w, 9 weeks in DOC band + CST> > http://mymaysa. wordpress. com/> >>