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Old 09-27-2016, 02:59 PM #1
Sumermine Sumermine is offline
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Confused My husband is having episodes, and the doctor's don't know why

Hi Everyone,

I apologize in advance for the long post, but I am desperate for some advice or guidance. My husband and I have been married for almost a year, but together for six. For some background, my husband has hydrocephalus (Dandy Walker), which was diagnosed at three months old. Since then he has undergone six revisions, the most recent in April 2015. He is now 35 years old.

After his most recent revision, he had a personality change. He is now more moody and quick tempered. He also started having memory and speech issues after surgery. His short term memory is spotty, and he frequently forgets whole conversations. He says that he can formulate a sentence in his head, but has difficulty getting the correct words out.

The surgeon and neurologist went back and forth trying to determine who should be the one to treat these new symptoms, and ultimately between the two, seizures and sleep apnea were ruled out.

Now, adding to those symptoms, my husband is having episodes where he will suddenly get a splitting headache, double vision in one eye, a loss of mobility in the right side of his body and loss of consciousness or feeling like he's going to pass out. This has been happening for months, and his neurologist doesn't know what is causing these new symptoms and the old, but still present, symptoms.

Does anyone out there have any experience with any combination of these symptoms, or a recommendation of a type of specialist he should see? It's really beginning to take a toll on him emotionally, and I am willing to try anything to help him.

Thank you.
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Old 09-27-2016, 08:37 PM #2
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If this change came soon after the last revision...and no other accident or condition is suspected.. I think I would seek out an independent second opinion, someone who will review the revision procedure notes and also assess him..
I don't know about the procedure, but maybe something went amiss ?? and the surgeon that did the procedure is reluctant to mention the possibility?
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Old 09-29-2016, 10:59 AM #3
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Quote:
Originally Posted by Jo*mar View Post
If this change came soon after the last revision...and no other accident or condition is suspected.. I think I would seek out an independent second opinion, someone who will review the revision procedure notes and also assess him..
I don't know about the procedure, but maybe something went amiss ?? and the surgeon that did the procedure is reluctant to mention the possibility?

Thank you. I'm trying to get him to make an appointment with a neurosurgeon to do just that. He is becoming so frustrated that he doesn't want to see any more doctor's because they won't "have any answers".

He also just had a cognitive evaluation, but the psychologist stopped halfway through and said she couldn't complete it because he's showing signs of depression and apathy. He now needs treatment for that before they can complete the evaluation. And again, he's being wafty when it comes to making the appointment. I can only do so much, and I can't force him to go to these appointments.

I am definitely going to push for him to see a new neurosurgeon though. I think that is a good place to start. Thank you!
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Old 09-29-2016, 11:46 AM #4
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We do have a Hydrocephalus forum , you may find more info there.
http://www.neurotalk.org/forum14/

Or use the site search for Hydrocephalus that will find any posts/threads with that term.
http://www.neurotalk.org/search.php
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Old 10-05-2016, 09:28 AM #5
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Thank you. My husband spent most of last week in the hospital due to these symptoms, and still no answers. I'll try that forum and see if anyone there has heard of this.
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