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March 19, 2015 at 4:11 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5399kkrylee3Participant
Thank you for your help. He said that he was slouched a bit in desk looking forward. No particular bend to his neck. He had gotten up just before that and sat back down. Then blindness for 1 hour. Pupils did react properly during blindness. After the hour vision came back gradually, like seeing light first, then shapes, then vision normal. At the E R I had them do a poor man’s tilt test, since my daughter has POTS, and pressure didn’t change much but heart rate went from lying down to standing: up by 35 beats.
He is even more flexible than my daughter and he has double jointed elbows but no stretchy skin. His medical history is baker’s cyst behind knee, growing pains in legs?, bottom of feet hurt to walk sometimes, and on at least three occasions had swollen lymph nodes in several locations at once. The one under arm pit stayed for weeks, others were one in shoulder and other one in neck. When in shoulder, given antibiotics which cleared it up.
March 14, 2015 at 5:11 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5391kkrylee3ParticipantThank you for your response. This is my daughter’s mri (who is 23, but this was taken @ 18 yrs old. My son just lost his vision for the first time this week. He is 13 which is the same age that my daughter 1st lost her vision. They both have hypermobile joints, he also is double jointed in both elbows. The poor man’s tilt test was done on him in the E R and his heart rate jumped up 35 beats immediately upon standing. We haven’t seen a doctor yet, other than E R, on his issue. Appointment is set though. My family has members who have connective tissue disorders but not ED (Sjogrens and Scleraderma). And no, there was no physical or emotional trauma prior the blindness which lasted almost an hour with another blackout the following day for only seconds. He was sitting at his desk in class and all of a sudden, he was blind. It happened the same way for my daughter at the same age. She now has POTS, ED Hypermobility Type, Autonomic Neuropathy, and Gastroparesis.
March 13, 2015 at 5:05 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5382kkrylee3ParticipantThis MRI is a lot like my daughter’s except for her pituitary which is large, round and globular rather than empty sella. We followed up with new mri’s and mra’s annually to watch the pituitary but they just said all is okay.
She has POTS, Autonomic Neuropathy, Gastroparesis, and we believe Ehlers Danlos Hypermobility Type. It all started with transient vision loss and tachycardia 10 years ago. And as you all know she has constant numerous symptoms with no real help from doctors except for her gastroparesis. She now has a pacemaker on her stomach to aid in the movement of food as her stomach was paralyzed.
Yesterday, I got a call from school saying that my 13 yr old son was blind. His blackout lasted almost an hour with no sight at all. My daughter’s first episode was at the same age with same start except that her blindness lasted only 15-20 minutes. Since then continual blackouts but they only lasts seconds to a minute. AND, he has extreme hypermobility too.
What do you think of the mri attached?
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