my experience

[JOFFLE]

If I didn't thank people for the well wishes and hopes that I will find answers....thankyou. Thank you Anna Webb for the referal. I honestly have not done extensive research on surgery as I was turned from it by family doctors. Now I am scared to do the research and find the answer is no. I also work at a company with a smaller insurance agency that I would definitely not want reporting my consultation to my work.(If that's even legal). Really I have a whole bag of little nagging fears that stop me from going. Still I think by talking on here I am heading in the right direction. -joffle

[Ryan S.]

If I didn't thank people for the well wishes and hopes that I will find answers....thankyou. Thank you Anna Webb for the referal. I honestly have not done extensive research on surgery as I was turned from it by family doctors. Now I am scared to do the research and find the answer is no. I also work at a company with a smaller insurance agency that I would definitely not want reporting my consultation to my work.(If that's even legal). Really I have a whole bag of little nagging fears that stop me from going. Still I think by talking on here I am heading in the right direction. -joffle

Hello Joffle,

Just read your posts. Your definitely doing the correct thing by talking about it here. Feel free to email me at any time @ ryandauer962@gmail.com.

Though I had surgery as a kid I still have dealt with and continue to deal with pretty much everything when it comes to cranio.

Ill try and respond to some of your comments in this thread a bit later.

Take care,
Ryan

[JOFFLE]

Dear Ryan, Thanks for the reply. I usually check this site out every day but don't find the courage or motivation to write on it everyday. Today I have to vent because my differences got pointed out in front of a few people at work today.....and then well, I sunk. So in spirit of trying not to do that I thought I would type up something on here. Today I had a new guy at work, not being mean at all, ask me if I had ever been called Rocky when I was a kid(you know like the guy from the Mask with Cher.) This guy said people called him that when he was younger because he had a long face like myself. Holy crap. I blanked and panicked. And yes Rocky was on the name calling list as I grew up. I wish at my age now I would have developed thicker skin. I mean this guy was just trying to relate. Instead I acted like I didn't know the movie.(Which he probably saw right through.) Anyway now I am dealing with leveling with the guy because even though he wans't cranio he did look differently and might be symphathetic to some of the same names I heard as a kid. But anyway I really takes the wind out of my sails when anything even gently reminds me of my condition. I pray if nothing else I can learn to deal with these feelings before I get any older. These feelings waste so much time and energy. Thanks -joffle

[fitmomof2ae]

I'm glad you feel comfortable using the forum to vent. I'm sorry your differences had to come up at work today. I think you're right that he was just trying to make a new friend and find common ground. I will pray that you can find peace as you continue to live with your condition.

[Lars]

I've been there too many times to mention. I usually avoid taking the bait - even if it's put out innocently. It's just giving people permission to keep doing it.

[freeflykat]

I just want you to know that you are not alone. My husband is 40 and has untreated sagital cranio. Our son was born with it as well and we fought like heck for him to be treated. Infact he just had surgery number 4, long story there. I am trying to sign my hubby up with an account so he can reply, but he is taking a long time thinking of a username. I am on the facebook group and wrote out a long story on one of the group pages. I think you can email us from here or look up my facebook with my email address kzornig@grm.net

[JOFFLE]

I visit this sight every couple of days to see if anyone has posted anything new. All the posts have been great so far but it seems posts have stopped for a while. I just wanted to get the ball rolling again. To hear from others with similiar cranio issues would be great. The last post that talked about her 40 year husband with sagital....if you could post with more information about how he has coped and moved foward, that would be awesome. I wish I had the energy to post every time I think I should but I usually just have enough to look through and see if there are any changes. Also if anyone is more comfortable sending me a text I would be grateful. My email is joffle@yahoo.com. Until next time. -joffle

[alma]

Hello,

Your definitely doing the correct thing by talking about it here. Thanks for telling your story.

Warm wishes

[Brian]

The op has it right. I too am in my 30's and I could have wrote his post as it's my story and I fear it's others as well. I've thought about this everyday from the 5th grade until now. I haven't left the house in 17 years without a hat( and finding the right 1/style was difficult for years before I finally found something that was acceptable) . No wife ...no kids and every move of my life revolves around if i'm allowed to wear a hat.

How is this living? I really don't see any end in sight because I know myself and i'll never get over this.