39 with treated sagittal -my story and questions

[Tristen Greenleaf]

I've posted on this website before, however not on the adults with cranio forum. I had surgery in 1971 for sagittal and have a long scar and bump on my head. I had no real physical problems growing up, only an occasional shocked teacher or peer who happened to touch my head and feel it or see the scar. I was fortunate to look fairly normal aside from a fairly narrow forehead and wearing hats and helmets has proven difficult at times as I'm still a bit "football" shaped. My husband has been kind enough to "customize" my motorcycle helmets which eases headache pain I suffer from ONLY from the tightness on my forehead. I have never known someone who had this and this forum has been very informative. I have since learned that I have sagittal because I was a twin, breech, and my head was under my mother's rib cage during the later part of her pregnancy. My twin does not have cranio. When I was born my mother was told that there were a LOT of cases of cranio in Colorado and thought there might be a link between high altitude. I have just read a report that hypothyroidism could also be a cause, which my mother was diagnosed with many years after my birth. In any case, it is all very interesting and I've learned a lot. I am considering starting a family at the ripe old age of 40 and have been diagnosed with hyperthyroidism. I am curious if anyone has more information on links between this type of thyroid disease and craniosynostosis. It isn't a huge concern, I am very curious however. As well, I still live in Colorado and at 8,500 ft. and wonder if the reporting on high altitude and cranio is also something supported. Cranio is not a genetic issue in my family. Thanks for listening. I have photos before/after/and recent.

[charliesmummy]

Wow i just took a look at your photo's, you look fantastic!
Unfortunately i cant answer any of your questions although i did also read the report about the cranio link to hyperthyroidism.
Thanks for sharing your story with us x

[evergreenmom]

I don't think any of us would choose not to have a child based on the possibility that he/she may have cranio... I'm sure your mom would say the same!! Not that I think you are saying this just trying to reassure you that even if you have a child with cranio they would most likely be just fine with surgery... you are gorgeous by the way and I'm sure I would never have thought there was anything wrong with your head shape without you pointing it out!

I hadn't heard about the elevation link before... I don't think we even have that many members from Colorado so I don't think it's really a problem... As far as thyroid issues I know there are a few moms on here that have wondered about that also... I saw a thread at one point with an article about it, I'll try to dig it up for you...

At any rate best wishes and I hope you do have a child- they are wonderful and complete life in a way that you cannot imagine until you have them. I had my first at 38 and my second at 41 and at this point though I'm one of the older momma's on the playground I also feel like they keep me young!!!

[evergreenmom]

check out this link...

http://www.craniokids.org/support/showthread.php?t=14923

[Nay]

Hmm...my son, Aaden, just had surgery at Denver Children's Hospital. And a nurse there did tell me there that CO has the highest rate of Cranio in the US & they do wonder if it has something to do with altitude. I thought that was a bit odd, but who knows! Also, there might not be many members here on CK from CO, but they do a TON of cranio surgeries at Denver Children's. I see several kids/babies with it every time we are there for a check up.

[andrews mommy]

I read something about the CO link on here before i think...I see a cranio kid at all of our visits with our PS. though i've only found literally only a couple parents on ck and 3 on fb that have used our team. Would be interesting if every cranio parent went to the same site at the same time and let it be noted who's from where and who used what team...

[Tristen Greenleaf]

I had my sagittal surgery at Denver Children's Hospital as well, however almost 39 years ago. :)
Thanks for all the posts! Everyone is so helpful and I've learned so much in a short time about my own condition as well as about cranio in general. I do not consider craniosynostosis a reason to not have children, there are other factors I am more focused on with regard to making a decision. I did however find the reports very interesting and worth exploring in general and for the sake of other kids born twins, at high altitude, etc!

[monty]

This is very interesting.

I had 3 hours sleep last night and started work at 8am. I cant keep a shred of weight on me either and often suffer fatigue, sometimes debilitating particularly after eating. Anyhow after taking 7.5mg zopiclone at 9pm and labouring all day I am now awake again 3 hours later with no prospect of getting to sleep now till tomorrow night. Ive got to be at work at 8am. All this info is so usefull to me as I fear I may have other healh issues along with the cranio.

When I took hormone altering drugs to kerb hair loss they ruined my physical and mental health and I am still not fully recovered. I have wondered whether going to se an endo would be a practical step.

thanks for your input

[monty]

yeah just checked out you photos. you're hot! would love if my surgery made me look like you, not like you obviously, im a guy lol but id settle for half as good looking

[Lars]

Wow, the young female version of me.