Tamzie's Story

[Tamz]

Hi, Like I said I am a cranio grownup I was an old person I guess when they found out I had multiple fusion in my skell the Dr. told my mom if they did surgery then I would probably die and if they didnt do surgery I would die. It was 1980 and I was 13 years old going into puberty trying to be a regular teenage girl. Well I was playing with friends and fell I hurt my knee. When they put me in the hospital for that mom asked them to do a "full workup" they did.. but when they took xrays of my then very pointed head they found that almost all the sutures were fused- well if you dont know the best time for cranio surgery is while you are very young (which most of you know) they told mom IF I came out alive it would be a 10-13 hour surgery and I would likely be in the hospital for about 3 weeks, now the good news I was in surgery for 7 hours and was home in 3 days riding a bike in a week. what they did actuall was to cut rectangular shapes out on each side of my brain and just lie them on my brain nothing to hold them in place but my skin.it has been 27 years and they have had to relive the pressure one time in 1981 with a drain tube. I am 40 years old I go to college full time I have a hubby and my dog and live a full independant life. thankyou all for being here this is the first time in many years I haven't felt alone about this. mom is gone now and a lot of people don't even believe me let alone want to talk about it. Thank-you all again. Tamzie

[Jennifer]

Thanks for sharing you story. I'm glad you found us. We have a few other cranio adults on the site too!

[charliesmummy]

Thank you for sharing your story with us. We are so lucky to have this site and get all the support needed to go through with our childrens surgery but back then i suppose things were very different for your mum. Welcome to Cranio Kids x

[Candice]

Welcome Tamzie! What an amazing story, what courage you have!! We are truly lucky to such an amazing support group available through the wonders of technology. It must have been tough for you dear Mom, I can't even imagine. Welcome again, it's great to have you here!

[jenniferh]

Welcome! What a story! I can't even imagine having to make that decision as a mom. Thanks for sharing your story and I look forward to getting to know you better :)

[Tamz]

you are all so very kind, yeah there were no support groups when my mom needed one. I wanted to mention I didnt get out scot free I have dwaynes retraction syndrome in both eyes and I can only use my right eye I have very litle sight and no use of my left eye at all and I have pituitary dwarfism beecause my brain squashed my pituitary gland (located under the brain)thanks again for being here

[mayashekhina]

Welcome Tazzy, its so great to hear from other cranio adults, so sorry you didnt get off scot free but what a wonderful blessing you are still here at 40 when you had had such a shoking and stressful initial prognosis!