@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.