Head Mystery

Posted by juliastephenson @juliastephenson, Apr 29 8:05am

Trying to figure out my mystery out that no other doctor knows so far

Hello @juliastephenson and welcome to Mayo Clinic Connect. Can you share more about your symptoms and your story as a way to allow for me to connect you with members who may be able to support you in finding answers?

REPLY

Sure
Hello My name is Julia Stephenson
I was born in Russia and adopted and moved here to America.
Was diagnosed with Hydrocephalus 2020 Around Jan I started to have head pain in my left side ventricle went to doctors to temple who told me it was just headaches which I kept telling them no its not I don't believe it because the symptoms don't match what they were calling a headache. Then I went to a seizure specialists and she wanted to diagnose me with epilepsy but got tested for that but it wasn't what was happening.
My symptoms were really odd here they are…
head pain only in left and would radiate to my right side
Would look up and to my left every time i spoke
Started stuttering
Couldn't form words correct
Numbness in right side of the body
went mute
Would pass out
stare blankly and not know what is happening
fatigue
confusion
wouldn't make sense to what was happening
then before I had a shunt put in
I went mute
ended up in a facility because tried to commit three times
then would have phycological episodes
Then demonized episodes meaning wouldn't care in the world what was happening
would try to commit would want to hurt someone

My friends described me as there but not there no recognizing who i was when i had the different episodes
each episode would last 15-30 mins from Jan-May then after May-Nov 30-1 hour episodes
Nov came along and I got sent to a facility because one of my episodes
when i was in the facility i had a episode that made me go mute and sent me to a er which luckily my doctor sent me to a neurosurgeon who listened to me about my pressure in my head and my Colcephaly and he then put a shunt in around Nov 10 2020 ever since that day the head pain seemed to stop until recently this February the head pain started again and the episodes started again. So no one really knows what's going on but I have been called crazy and other things by many doctors besides my primary and surgeon who stayed by my side the whole time which I am thankful for.
Now I had a cervical spine mri today and the disks look like they were compressed and some look like they have herniated disks and the spine is not straight at all whats so ever.

Im supposed to go to Mayo in October but I dont really want to but might have to cause who knows what I have.

REPLY

Thank you for sharing more of your story and where you are at in terms of your care. Member @catharbert may have some more to share with you. Because you mentioned epilepsy as part of your exploration, I will also mention @jakedduck1 as he may have additional thoughts.

I'd also like to mention these resources:
–Mayo Clinic information on hydrocephalus:
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604
–NIH information on normal pressure hydrocephalus (NPH):
https://www.ninds.nih.gov/Disorders/All-Disorders/Normal-Pressure-Hydrocephalus-Information-Page
Did your doctor have a theory on the cause of the hydrocephalus in your case? You mention coming to Mayo in October. Do you have an appointment scheduled?

REPLY
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