Adult craniosynostosis

@lcxiong, welcome. Mayo Clinic's Cleft and Craniofacial Clinic on the Rochester, Minnesota, campus uses a multidisciplinary team approach in the treatment of all types of craniofacial disorders, including craniosynostosis. https://www.mayoclinic.org/departments-centers/cleft-craniofacial-mayo-clinic/sections/overview/ovc-20511135

I suggest you call Mayo Clinic directly to discuss this surgery for adults. Here is the contact information: http://mayocl.in/1mtmR63

Is this a surgery you are investigating for yourself?

Thank you for your response Colleen. I appreciate it.
Yes, I am 21 years old and I’ve just recently been diagnosed with unicoronal synostosis. I believe my case is mild so it went undiagnosed for some time.

Did the diagnosis come as a surprise? What symptoms led to getting the diagnosis?

I am looking for any type of follow up information with adults who had corrective surgery as infants. I had corrective surgery in 1983, at 3 months old. Is it possible that nausea/dizziness/ear ringing is related….even though I am 40 years old now?

@linds I had surgery for sagittal craniosynostosis at the age of five months in the 1965. Fast forward 50 years. I started having issues of loss of dexterity in my right hand, balance, numbness/tingling in my right hand and when I sneezed it felt like my head would explode. I was finally diagnosed with Chiari Malformation and Syringomyelia. Chiari can be genetic or acquired. In my case my neurologist and neurosurgeon feel it was a result of the surgery I had at five months. I come from a larger family with lots of cousins and no one has had any issues. The Chiari caused the Syringomyelia. I have attached links to explain each condition and symptoms.

You may find this of interest. I am sure that the surgery for craniosynostosis has improved since the 60s.

Have you had a brain, head and full spine MRI? That may be the first step in making sure that it nothing else that maybe causing your issues. It took me 5 years to get a correct diagnosis. If only I had a MRI sooner I would have have permanent nerve damage in my hand.

I would recommend seeing a neurologist to get your answers. Especially since you have had surgery as a baby. I hope I haven’t scared you. This is just my story. Yours maybe different, but do your research and ask questions. Your issue maybe something totally different. Unfortunately your symptoms can be attributed to so many other conditions that are more well known. This is why I mentioned it.

I had never heard the words Chiari Malformation or Syringomyelia. I believe that the reason I did was I am to be an educational tool and get those words out there. So if someone hears those words, they will say…I have heard of that.

Wishing you all the best in finding answers.

I really appreciate you taking the time to answer me. You didn’t scare me at all. I have not had an MRI, but I do want one.
There are just several symptoms that I suspect are somehow related, and it all comes back to my head. I have never met or spoken with anyone else who had this. Thank you again

@linds I was wondering how you were doing. Have you gotten a MRI &/or gotten any answers to your issues?

I broke my c1 in my neck when I was 23 yrs old , eight yrs later I had a blow to the head 31 yrs old I have been hospitalized so many times sense then Being told repeatedly there was nothing wrong with me.
I could tell you the symptoms here, but basically My whole nervous system is shot. Which affects every organ in my body At different times depending on what's being affected in my neck. I have used Cranial therapy , acupuncsure, It got to the point in 2016 where I could not even say full sentences.
my husband found out that Football players, we're going to see NUCCA chiropractors , Thankfully We found one in our area. I would not be functioning had i not went to see Criss at flip spinal care . We finally this year 2023 drove to denver colorado for an upright MRI & a DMX which we paid for.
My dens is flat from the wear so there is nothing to hold my head on my neck. That is why at times I do OK other times I don't . I now know I'm not crazy or just anxious. My whole nervous system is being affected.
They can't blame drug addiction on me. Because I don't do drugs. Although I've been treated like a drug addict many, many times.
Cronic Pain is not something to Just get used to Eventually, it will knock you to your knees. I had to try to find some relief.
We are not alone, and i'm so glad we all get to share some of the things we found to get better, thank you all!!

@linds I was wondering if you have gotten any answers from doctors since your last posting?