So my world has completely been turned upside down these last 2 weeks. My 4 yo that has hydrocephalus with a VP shunt for 3+ years with no problems has now encountered a problem that even our neurologist has no clue why its happened. We went in on Dec 3rd for our yearly check ups with the Neurosurgeon for his Shunt and his Ophthalmologist for his vision. Our 1st appointment was 1 bang MRI and Shunt xrays with followup reading was great. Showed a "perfectly" functioning shunt, great appointment even spoke about getting my son a service dog. Then on to our last appointment with the Ophthalmologist and my world shattered. Upon dilating his eyes the Dr seen the pressure and hemorrhaging around his optic nerve. Upon telling me this he was going to request an MRI immediately when I told him we just had one done this morning and seen the other Dr and was cleared of any issues going on. So he then calls my son's neuro Dr and they talk about what he seen. He returns telling me that they have no real answer as to whats been going except maybe this is the ending of something from my son being so sick the last 3 weeks prior with double ear infections on both ears and tonsillitis and sinus infection with a cold/cough. So they sent us home for the week with us returning to their office this past Friday. Now mind you they are telling me its something internally going on but cannot tell me how this happened or why it happened or what do i need to do to make this go away or prevent it from happening again or worsening. I get a nice we do not know. Now these are the TOP Dr's at the children's hospital we go to and come HIGHLY recommended and for 3+ years i have felt so very comfortable with them. OK well this past Friday's appointment was just devastating. Not only has the pressure and hemorrhaging worsened its now moved the the left eye too. So we were immediately admitted into the children's hospital for more scans and testing to no avail show a REMARKABLE functioning shunt. So our neuro Dr consults with his partners that all come to the same conclusion there is no clear idea as to where this pressure and hemorrhaging is coming from and that they want to do surgery this coming week for a shunt reconstruction knowing full aware his test are showing its functioning perfectly and taking a look around to see if they can not find whats causing this issue. Now they tell me its nothing I've done that its all internal and a neuro thing not my eye Dr's area but neuro's. grrrr i just want to squeeze someones head till i get my answers.... sorry..
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So besides my well what the wholy heck is going on has anyone else gone through this? Now my son is 4 but is seriously delayed in all areas and is very little. Does anyone have any thoughts ideas anything?
