33 year old adult with sagittal stynosis (treated)

[robin_pta]

I am a 33 yo female with treated sagittal stynosis. I was inquiring to see if there are any others out there who face any issues with depression/anxiety or any related disorders (not concerning cosmetic issues). I was also interested on any information on the chance of potentially conceiving a child with the same defect. My brother and I were both diagnosed at birth (we're 4 years apart) and were both treated. He had about 5 surgeries to my one. He has a 3 y.o whom was not affected. Thanks, Robin

[cheryl2]

Hello Robin, I would guess that since your brother also had cranio, that your condition is possibly syndromatic. It would still be tough to say the probability of your potential children inheriting cranio. In my case, both my daughter and I have a syndrome called Saethre Chotzen, which caused my daughter's cranio. Even though I too have the syndrome, I did not have cranio. I do have other features of the syndrome, however. The geneticist told us that any of my offspring has a 50/50 chance of inheriting SCS. But since the features of the syndrome vary so widely, it is impossible to tell for sure the probability that the child will have cranio.

I hope that makes sense.

Take care :)

[Tristen Greenleaf]

Robin,
I am a 40 year old with treated sagittal but no evidence points toward my condition being syndromatic, as no one else in my family has it. I do suffer from depression and anxiety however. The depression part runs in my family but not so much the anxiety. I too only had one surgery. I'd love to see photos! I have some posted. Pre/ Post surgery. Thanks for sharing your story!

[*jules*]

Hi Robin. I have no answers to your questions, but wanted to welcome you to CK. We have several cranio adults here (treated and untreated) and I'm sure they'll be a great source of info and advice for you :)

[monty]

Hi sorry I've taken a while to respond, Not known what to say. dont know whether my fluctuating depression/anxety is congenital or a product of my experience.

Anyway Hi though and welcome, welcome, welcome. You've found a nice place!!

[mary_vance]

Hi there!! Im 29 and had unilateral coronal on the right. I too have suffered depression/anxiety issues, none of which are cosmetic related. I have a 7 year old son who did not have cranio. We should chat sometime!!

[Jenny]

Hi there! I'm 30 years old, bicoronal, corrected, and syndromic. I also have anxiety/OCD issues, not related to cranio, but just life, lol. I am married and have three kiddos. My first also inherited my cranio, but my second two did not. With syndromic cranio, it is a 50/50 chance of the child inheriting it. If it is not syndromic, then the percentage only goes up slightly from and other person. If you are considering children, keep in mind that cranio is correctable. You will want to keep in mind if it is syndromic, what other effects the syndrome my come along with. Most cranio cases do not have complications, but rarely there are. In your case, being saggital and single suture, the likelihood of syndromic complications is slim. I hope that helps you out some.

[monty]

Wonder whether it would be possible to do a poll of all adults whether treated or untreated, syndromic or non syndromic to see if there are any discernable patterns?

I for one would be very interested in the results

[Katy]

My sister has untreated Coronal. Re the genetic factor, my little Olivia had very mild metopic but hasn´t needed any surgery.
My Sister has lived on anti depressants for years. She has other issues as well, hormonal ( balding to the extent she has to wear a wig ), constant migrains and double vision.

[monty]

My sister has untreated Coronal. Re the genetic factor, my little Olivia had very mild metopic but hasn´t needed any surgery.
My Sister has lived on anti depressants for years. She has other issues as well, hormonal ( balding to the extent she has to wear a wig ), constant migrains and double vision.

Poor women! Is there nothing that can be done for her?

[robin_pta]

Thank you all so much for yours posts! I really need to get on here and post pics. On another note, I start ovulating tomorrow so wish us luck!!!

[fitmomof2ae]

Good Luck Robin! Thanks for checking in again!!!

[readersthink]

I might be little late, but wish you Good Luck. Welcome to CK. Am glad to see many cranio adults willing to share their stories.

[robin_pta]

Thanks everyone for your comments. I forgot to mention I experience pretty frequent migraines also. Interesting. Btw, not pregnant yet ... Still trying!! :)

[Hi!IamJay:)]

Good luck :)

[robin_pta]

Just found out I'm pregnant!!! I go tO the doctor on Friday. Soooo excited!

[jjmc123]

congrats! How exciting!!!

[Monkey'sMommy]

Wow, that is great news! Congrats!!!

[charliesmummy]

Fantastic new's, congratulations! x

[williamsmom]

Robin - I just saw your thread here, and congrats on your pregnancy!!!! YAY!!!!

My husband had surgery for sagittal cranio back in 1979 - no one else in his family had ever had it. So, I assumed that is was probably some type of recessive gene, and that our risk for having a child with cranio was about zero. I thought those assumptions were confirmed after our first two had no cranio - and believe me, I made the pediatrician well aware of our family history. So, when William was born, it was quite a surprise that he had sagittal cranio...what's funny is that with the first two kiddos, I had them check their heads right away - instead of counting fingers/toes, I was checking for soft spots. But, as William was coming down the birth canal, I started having back labor - thinking he was flipped, my midwife was checking to see where his fontanelles were so that she would know his position...she said, "Hmmmm...I don't feel the fontanelles" You know, as paranoid as I had been about it with the first two, nothing came to mind when she said that... So, after having William and starting our cranio journey, we spoke to a geneticist - he said that the gene mutation started with my husband, whether the mutation occurred before or after conception is unknown. But, it is a dominant gene, so we have a 50/50 chance of having children with it. Now that has been passed to William. There is no known syndrome associated with it though, at least not as far as we know at this time. Just know that there is treatment out there if it happens. When William was born with it, we decided we were done having children for sure. We even went to the consult to have a vasectomy done...but, the more we thought about it, the more we realized that wasn't the right decision for us. At least not right now. Look at my husband - it was a tough journey for his parents to endure, but they all made it, and now he can go on to do great things. I don't want the chance of cranio to stop me from having more children. If it would happen again, we will deal with it - and I can tell you that I'd never ever ever ever have another strip craniotomy without helmet therapy afterwards. At least if it happens again, William has been a learning experience.

If this gets passed on to your little one, there is treatment, and you will endure. :) And, there are great forums like this one to give you support :) Best wishes, and congratulations!!!!

[cheryl2]

Congratulations!

[Anna Webb]

hi there, we were told that because Lily's cranio was non syndromic it is unlikely to be passed on. It is so true that cranio is fixable unlike many genetic problems. Lily is the most delightful little girl I could have ever wished for, who happened to also need surgery for cranio. Don't let unknown fears trip you up and lead you down a path you were not meant to go, following fear only leads to heart ache. Live and pursue the dreams in your heart. all the best!!!