It has been so comforting having found not only this website, but also this page in particular. My 3 month old son was just diagnosed with a 5.4 cm x 7.8 cm x 10 cm cyst on his cerebellum. At birth, there were no issues..he is my third baby and only boy and he weighed 9 lbs 2 oz and was 20 1/2 inches long. He nurses like a champ and is the light of my life. At his 2 month check-up, the pediatrician measured his head and found that it had grown 2 inches since birth..as you know, infant head circumference is measured in centimeters, the growth alone was in inches!! The doctor ordered a skull x-ray thinking perhaps the bones in his head had fused together prematurely. The Skull x-rays came back negative meaning all looked well! We went back on the day he turned 3 months old for a follow up appt. (Oct. 12, 2010). Christian's head grew 2 cm in a month (from 43 cm to 45 cm) so the Dr. ordered an ultrasound as his fontanel is still open and he didn't want to give him the CT and expose him to radiation. We had the u/s done the next day (last Wednesday 10.13.10) and got a phone call a few hours later that they had found a cyst and he needs to go to Children's Hospital of Philadelphia (CHOP) for an MRI with and without contrast and which required him to be sedated. We called the next day to schedule and his appt. was made for that Friday (10.15.10) evening at CHOP. We got the phone call at 11 pm that Friday (just a few days ago) that it is an arachnoid cyst that measures 5.4 cm x 7.8 cm x 10 cm and is on his cerebellum. The MRI showed that there is intercranial pressure, it's blocking cerebralspinal fluid, there's hydrocephaly and it's growing. Christian's only symptoms were the macrocephaly and I noticed that at about 7 weeks old to present day, he would scream anytime he was in his carseat or laid down flat on his head ( he sleeps on his side or belly which I know is not the trend b/c of SIDS) and my husband noticed that sometimes he just stares off and doesn't blink but you can normally snap him out of it. Otherwise, he coos, smiles, laughs, follows you with his eyes, turns his head to look for you, rolls over from belly to back and back to belly, and has found his fingers (he loves to suck his thumb). His neurosurgeons are Dr. Storm and Dr. Sutton and we meet with them this Wednesday (10.20.10). After reading about so many complications people have with shunts and the fact that he is so little just scares me to death. I'm so scared my son will never have a normal life, his brain over drain and develop into the chiari syndrome, or even die from complications! I have yet to read a story about someone with this brain condition have a positive ending-meaning there are no complications and after the procedure, their life just goes on as normal. i also haven't read any stories about babies as young as my son having this brain surgery (they are thinking shunt and fenestration). I am just so scared of the unknown and want to make the best decision for him as he can't tell us what he feels. I hear from so many sources though that this is so common and not a big deal but it doesn't sound that way after hearing the stories from patients!
Thank you so much for sharing your stories and I'd love to hear your feedback!!!
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Hi Ladies,
It has been so comforting having found not only this website, but also this page in particular. My 3 month old son was just diagnosed with a 5.4 cm x 7.8 cm x 10 cm cyst on his cerebellum. At birth, there were no issues..he is my third baby and only boy and he weighed 9 lbs 2 oz and was 20 1/2 inches long. He nurses like a champ and is the light of my life. At his 2 month check-up, the pediatrician measured his head and found that it had grown 2 inches since birth..as you know, infant head circumference is measured in centimeters, the growth alone was in inches!! The doctor ordered a skull x-ray thinking perhaps the bones in his head had fused together prematurely. The Skull x-rays came back negative meaning all looked well! We went back on the day he turned 3 months old for a follow up appt. (Oct. 12, 2010). Christian's head grew 2 cm in a month (from 43 cm to 45 cm) so the Dr. ordered an ultrasound as his fontanel is still open and he didn't want to give him the CT and expose him to radiation. We had the u/s done the next day (last Wednesday 10.13.10) and got a phone call a few hours later that they had found a cyst and he needs to go to Children's Hospital of Philadelphia (CHOP) for an MRI with and without contrast and which required him to be sedated. We called the next day to schedule and his appt. was made for that Friday (10.15.10) evening at CHOP. We got the phone call at 11 pm that Friday (just a few days ago) that it is an arachnoid cyst that measures 5.4 cm x 7.8 cm x 10 cm and is on his cerebellum. The MRI showed that there is intercranial pressure, it's blocking cerebralspinal fluid, there's hydrocephaly and it's growing. Christian's only symptoms were the macrocephaly and I noticed that at about 7 weeks old to present day, he would scream anytime he was in his carseat or laid down flat on his head ( he sleeps on his side or belly which I know is not the trend b/c of SIDS) and my husband noticed that sometimes he just stares off and doesn't blink but you can normally snap him out of it. Otherwise, he coos, smiles, laughs, follows you with his eyes, turns his head to look for you, rolls over from belly to back and back to belly, and has found his fingers (he loves to suck his thumb). His neurosurgeons are Dr. Storm and Dr. Sutton and we meet with them this Wednesday (10.20.10). After reading about so many complications people have with shunts and the fact that he is so little just scares me to death. I'm so scared my son will never have a normal life, his brain over drain and develop into the chiari syndrome, or even die from complications! I have yet to read a story about someone with this brain condition have a positive ending-meaning there are no complications and after the procedure, their life just goes on as normal. i also haven't read any stories about babies as young as my son having this brain surgery (they are thinking shunt and fenestration). I am just so scared of the unknown and want to make the best decision for him as he can't tell us what he feels. I hear from so many sources though that this is so common and not a big deal but it doesn't sound that way after hearing the stories from patients!
Thank you so much for sharing your stories and I'd love to hear your feedback!!!
Thanks,
October 18, 2010 - 8:59amMaria- Christian's mommy
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