View Full Version : hope this helps someone?
05-13-2010, 07:01 AM
Hi, When I was barely 18 yrs old, my son of 8 months old started showing signs on his forehead of a protrusion of bone. Within weeks, he was diagnosed as having Craniosynostosis and would be operated on. We had never heard of this, and our Neurosurgeon said he took our case to the States just beforehand to deliver a case study (ours was it). My son Ryan's skull was cut from ear to ear, over his skull, where they dropped the forehead skin to cut away 2cm of skull bone over his eyebrows, 2cm of bone down the centre of his forehead, and also 2cm of bone over the entire incision (ear to ear), they then placed back the skin, and left actually two loose bones on his forehead. There was no helmuts worn in those days, and after maybe 3 days in hospital, we went home. My son started walking shortly afterwards, having no symptoms whatsoever, either that they worked close to the brain or otherwise.
He is a healthy, handsome 30 year old man, with a Keloid scar from ear to ear on his head. He often shaves his head proudly to clearly show the scar, which is with him for life! If he one day goes bald, it will be something to show his grandchildren? When he was operated on, I truly believe this type of surgery was still relatively new, and as I have "stumbled" on to this website, I really wanted to offer encouragement and hope to all new parents that are going through possible turmoil. All cases are entirely different, and all children are different as well. I am now nearly 50 years old??(OMG)!, and to this day, I think that had I not guzzled too many Calsuba Calcium tablets in those pregnancy days, maybe his bones would not have progressed and developed to the point that his entire skull/sutures and soft spot closed up? I will never know, but I am very grateful that he is still a wonderful, healthy young man now. If I can get it right, I can try to post the pics of him when he was having his stitches out and how he looks now? If any one is keen, I will then try - good luck to all! Liz
05-13-2010, 07:24 AM
Thanks for sharing your story with us, it's great to hear that your son is doing so well. My daughter had surgery 2-1/2 years ago and started walking 2 weeks post op.
There are a few Mom's on here that also had cranio surgery long ago.
05-13-2010, 08:07 AM
Welcome to ck Liz, so glad to hear your son has done so well, my boy was 3 when he had his surgery just over 2yrs ago, he is doing brilliant, i do worry about him balding though as his head is very lumpy and bumpy. We would absolutely love to see some pics of your son if you are happy to post them up, welcome again.xx
05-13-2010, 09:11 AM
Welcome to the site, its wonderful to hear ur story and will be so nice for new mums withs kids yet to go thru surgery to read. Im so happy to hear ur son is so proud of his scar, its one of the things i worry about now, how my son will cope with it when hes older.
I would love to see your sons pics.
05-13-2010, 09:12 AM
Welcome to CK Liz, it's great to read your story. We are all so proud of our Cranio Kids around here, it's nice to have you join us.
05-13-2010, 09:17 AM
Welcome to CK. I would love to see the pictures of your son! My son will be 3 when he has surgery in June and my biggest fear is how he will react to having a scar that big and any lumps and bumps that appear after surgery...especially how this will affect him later in life. It is encouraging to hear success stories about adults who went through this and went on to do well!
05-13-2010, 10:02 AM
Thanks for your story Liz! I could see my son proudly shaving his head occassionally too! (if hes like his dad he'll say "chicks dig scars"! lol):yipee
I do have a comment about you saying if you wouldnt have taken so many calcium pills maybe it wouldnt have happend.:comfort I dont believe that! My frist pregnancy I was Die hard about taking my prenatal and extra calcium (as i do not like milk at all), sadly though with my second pregnancy I was not as good about taking my vitamins. He ended up being my cranio baby. I do still feel guilty about not being as good about not drinking pop and taking my vitamins but i cant do anything about it now, and both are healthy. Dont hold any guilt with yourself for that! God has a plan and for some reason us Cranio Moms have this in our cards! Anyways I'll step off my soap box! Welcome to CK though!!!!:colors
05-13-2010, 10:07 AM
Thanks for sharing your story.
05-13-2010, 10:15 AM
Thanks for sharing your story with us.
My son had surgery 11 weeks ago, and he is doing great.
I always think about his future, so it is reassuring to hear that your son is my age - 30- and is doing so good.
05-13-2010, 10:25 AM
So glad to have you here Liz :)
I can only imagine what this experience was like 30yrs ago...especially going thru it at such a young age. You are one strong mama! Thanks so much for sharing your story with us. It's so reassuring to us relatively new cranio moms. My son had surgery for metopic synostosis last May, and even tho he has and is doing great, I still worry and wonder what his future holds. You're a great asset here and I hope you stick around. I'd also LOVE to see some pics of your son both before and after surgery. Recent pics would be great too if you and your son don't mind sharing. :) So nice meeting you Liz!
05-13-2010, 10:31 AM
Welcome Liz! I am a metopic mommy too! I would LOVE to see some pics of your dear son. Kind of a glimps into the future for many of us! Welcome to Ck!!:hugg
05-13-2010, 10:56 AM
Hi and welcome! Thanks for sharing your story. My son is metopic as well and will be having his surgery this summer. It's reassuring to hear how your son feels about what he went through and dealing with the scar. I would also love to see pics of your son sometime. I couldn't imagine going through all of this so many years ago without the support of so many others that had walked in my shoes.
05-13-2010, 11:06 AM
Welcome to CK!! Thanks so much for sharing your story with us. It gives great hope to all us mom's who wonder about their little kiddo's futures. I hope my Ian can be proud of his scar too one day, like your son. I too would LOVE to see some pictures if you care to share them. You can go to photobucket.com and up load them there and then cut and paste the code into a post here.
05-13-2010, 11:16 AM
It is so nice to have you here, I am so glad taht you have found us! Your story will be able to help so many others! I cant wait to see pictures of your son and I am so glad that he sports his scar proudly! Cant wait to get to know you-
05-13-2010, 11:31 AM
Thanks for sharing that story. Very inspiring. I'd love to see pics!
05-13-2010, 12:16 PM
Hi Liz - dont we all worry about the pregnancy influence. My story is very different. I had hyperemesis for 9 months. Its an extreme form of morning sickness where i couldnt keep anything down or even get out of bed. THerefore you taking extra calcium has nothing to do with it. I didnt take any!!!! So glad your son is doing great - its a real encouragement.
05-14-2010, 01:52 AM
Hi my husband had his surgery in the late 70's and is now in his early thirties and he is handsome and intelligent and altogether awesome as well! Our youngest child gets to share his daddy's condition so they will always have awesome scars to bond over! very cool! thanks for sharing
05-16-2010, 12:51 PM
Hi thanks for sharing your story. My Leigha comes from a long history of cranio on her biological fathers side of the family. Great-Great grandmother's sister and a daughter both died as infants(possible complications to ICP), Great Grandmother's son (died as Infant also sounds like ICP complications to me) Great-Grandmother's daughter bicoronal uncorrected who then had a son that was corrected, Leigha's biological father was said to have mild case by our genetic's dr. and his brother also has mild in my opinion, then Leigha had surgery 9 years ago at the age of ten months old and is looking at her second surgery this summer. Genetics say she has muenke's syndrome but the blood test did not prove the flaw. I wouldn't worry too much about pregnancy things the dr's don't yet understand what causes cranio. Look forward to seeing some pics and thanks again for posting we love to hear the success stories.
05-16-2010, 05:49 PM
So glad you shared your story! It's amazing how long this surgery has been around.
05-16-2010, 11:50 PM
Thank u so much for sharing your story. I did meet on time a cranio adult she was In her 30's at that time it was pretty new, but her results were not so good. She had coronal. I would love to see pics of your son. How was his result? I don't have pics of this adult I met. In fact I met her one time my husband needed hand surgery and she was one of his nurses. Thanks for sharing once again. :0)
05-17-2010, 11:06 AM
thank you so much for your story, we still have to have surgery so stories like these are amazing to me right about now!
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