Neurosurgeon Follow Up

Every couple of months, Little Miss Minion has a sedated MRI to make sure that her shunts are working well and that any excess cerebrospinal fluid is being drained. She had one today and things are looking good.

She seems to have slight issues with sedation, most likely due to her preemie lungs. Her oxygen levels dropped slightly during the procedure, but they were able to quickly correct the problem. Preemies, especially micro preemies, have underdeveloped lungs at birth and it takes them several years to catch up.

The actual scan was mostly good news. Everything looks good, except an area near her ETV site. It is slowly getting bigger, which could mean several things. It could be that her etv is getting blocked or is scarring over. It could stabilize itself. Or it could get worse. Right now, her neurosurgeon is confident that she’s not having any hydro issues and that the area is safe to observe. We’ve been cleared for 6 more months!

Another saga of preemie problems happened Saturday night. LMM had a low grade fever and threw up twice. Because of her shunt and her prematurity, the nurse line recommended that we bring her in to the er for evaluation. Could it be a shunt infection? A malfunction? Stomach virus? The doctor on call was ok with having us just watch her closely,  since we were going to have an mri today, but we have to be on constant alert for shunt issues.


5 thoughts on “Neurosurgeon Follow Up

  1. Not knowing if it is or isn’t your Hydrocephalus causing these symptoms, is sometimes the worst thing. Praying that what they found on the MRI doesn’t escalate to anything too serious but I’m glad she’s under care and monitoring.

    I love the care that babies and children receive with this condition. Something, which I wish wasn’t lost when you’re an adult. Keeping her in my prayer and thoughts…

    Liked by 1 person

    • The disconnects between the level of care that Little Miss Minion gets and the appointments you describe are so frustrating to me. I would think the effects and consequences of hydrocephalus would only get worse as you age, since your skull loses the elasticity and the ability to expand in the event of a malfunction. I’m also annoyed on your behalf that your doctors don’t take your self-advocacy seriously. You know how you feel, you know what needs to be done based on your history.

      Liked by 1 person

      • You are right.
        The question I’m left asking, from reading your posts and taking myself and other adults into account, is: When or why does the level of care change? It seems doctors who take care of children are more alert and proactive however, I don’t find the same happening in adult care.
        I hope and pray that by the time your LMM reaches adulthood, that she has better care than I’ve received thus far.


      • The part that I don’t understand is why your doctor won’t run the MRI you wanted. To my admittedly narrow knowledge, that is the only diagnostic test that will show the fluid build up of hydrocephalus. If you are willing to pay for it, I don’t understand why they won’t give you one.

        Liked by 1 person

      • When you fight this issue for so long and with so many different doctors, as I have since diagnosis, it’s easy to just give up and let it be. It’s tiring and draining on all counts – spiritual, mentally and physically. Some days, I literally feel like there is nothing wrong with me and touch wood, I have not been affected by my hydro since the sleeping episodes. I hear what you are saying and maybe it’s a case of, I need to take my own advice. But, this is what we adults living with Hydrocephalus have to go through. Crazy…I know.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s