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04-06-2013, 04:42 PM
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Quote:
Originally Posted by AGDee
It is my understanding that she's on a medication that reduces how much CSF she makes. She said she is feeling less pressure in her head already, so hopefully she won't get a huge rebound like that after the spinal tap.
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The medication I'm on is a diuretic (Diamox/acetazolamide) - so it doesn't necessarily control how much spinal fluid is produced or absorbed, sort of. But it does relieve the pressure as it limits all your fluids. But then again, she could have something completely different from intracranial hypertension pseudo-tumor cerebri which is what I have. I also was not put on any medication until AFTER my spinal tap so I was at the full 4 times normal amounts when I had my spinal tap - they needed to rule a lot of things out before prescribing.
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04-06-2013, 05:00 PM
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They believe it is pseudotumor cerebri but she said the medication they put her on was not a diuretic. I'll know more after I'm there. I'm not sure a scared 19 year old is hearing everything.
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04-10-2013, 06:30 PM
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Hypo's lumbar puncture is done and the results are clear of all of the other really scary stuff that they were looking for. Her intracranial pressure wasn't as high as they expected, but it was elevated above normal. She is on Diamox, but apparently it isn't just a diuretic. It is the treatment of choice for pseudotumor cerebri or intracranial hypertension because:
Carbonic anhydrase is a crucial enzyme needed in the production of cerebrospinal fluid. When this enzyme is suppressed, production of CSF decreases, which also lowers intracranial pressure.
The most common carbonic anhydrase inhibitor and the main drug used to treat chronic IH is acetazolamide (Diamox).
http://www.ihrfoundation.org/intracr...nsion/info/C31
The puncture was rough for her. They had a hard time getting it right and had to stick her several times because of that. Her back is very, very sore but she has not gotten a spinal headache yet. The toughest part now is sitting in class for several hours in a row.
I found out, while there, that she has actually lost quite a bit of her peripheral vision. Where I can see things that are even with my shoulders, she can't see things until they are about 35 degrees in from there. I'm really wondering if that led to her accident because she was merging, looking over her left shoulder, and didn't see the car and red light straight ahead until she was too close to stop. If she had full peripheral vision, I think she might have realized that car and traffic light were there.
Only time will tell if any of it will return as the optic nerve inflammation comes down. Her interacranial pressure does seem to be coming down from the Diamox.
She has a follow up appointment with the neuro-ophthalmologist next week. She is going to ask about follow up over the summer here at home and about whether she should be driving. I hope she asks the driving question, but I'm afraid she might not... because she might not want to hear the answer.
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04-10-2013, 06:37 PM
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I am sorry that the spinal tap was rough but thank goodness for you being there and for some good news.
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04-10-2013, 06:41 PM
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Glad she's doing better and that they ruled out the scary stuff.
They might tell her that she is okay to drive, as long as she relies on her mirrors and turning her head to look.
My husband has a "must use mirrors" restriction on his license, because he lost vision in one eye.
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04-26-2013, 07:03 AM
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I realized I never reported here that Hypo's headache is gone. She had a follow up with her neuro-ophthalmologist who said it usually goes away for 1-2 months after the spinal tap. He doubled her medication dosage and has referred her to a specialist in this area for the summer. She has one more week of actual classes, then reading week, then finals and then her freshman year of college is done. It's so unreal how fast that went by! Plans are made for picking her up from school.
I definitely feel like she ended up where she belongs. She's informed me this will be her last summer home as she intends on staying in NYC next summer. She loves it there.
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04-26-2013, 12:58 PM
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I'm so happy Hypo is feeling better! I will be rooting for her through finals week so that she can get a nice summer break.
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04-26-2013, 05:44 PM
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Quote:
Originally Posted by AGDee
I realized I never reported here that Hypo's headache is gone. She had a follow up with her neuro-ophthalmologist who said it usually goes away for 1-2 months after the spinal tap. He doubled her medication dosage and has referred her to a specialist in this area for the summer. She has one more week of actual classes, then reading week, then finals and then her freshman year of college is done. It's so unreal how fast that went by! Plans are made for picking her up from school.
I definitely feel like she ended up where she belongs. She's informed me this will be her last summer home as she intends on staying in NYC next summer. She loves it there.
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What are her plans for this summer?
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04-26-2013, 06:23 PM
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How wonderful she is going better! That must have been so stressful for both of you especially being so far away. Good luck to her on her finals!
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04-26-2013, 09:26 PM
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Good to hear some good news!
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04-26-2013, 09:42 PM
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Quote:
Originally Posted by Munchkin03
What are her plans for this summer?
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She's coming home this summer. She's had some interviews for internships over the past week- mostly unpaid, part time. She's hoping with an unpaid part time one, she can find a part time job around here too. She was going to try to take a class locally to make up the 3 credits she dropped this term but the dates aren't working out. Here, this is the last week of classes for most colleges so their spring term starts before she's home.
Next summer, she hopes to find a paid internship in NYC.
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04-26-2013, 10:19 PM
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I'm so glad to hear that she's doing better! Good luck to her on her summer plans!
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04-27-2013, 11:09 AM
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Quote:
Originally Posted by AGDee
She's coming home this summer. She's had some interviews for internships over the past week- mostly unpaid, part time. She's hoping with an unpaid part time one, she can find a part time job around here too. She was going to try to take a class locally to make up the 3 credits she dropped this term but the dates aren't working out. Here, this is the last week of classes for most colleges so their spring term starts before she's home.
Next summer, she hopes to find a paid internship in NYC.
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Hey! I've been following this thread and am glad your daughter's feeling better! I'm not sure if U of M is still running under the same summer calendar they had during my undergrad years (up to 5 years ago), but if so, the second summer term would start in mid-June I think. Would that allow enough time for her to get home? Since I think you mentioned her being accepted there, maybe they could fast-track her in as a non-degree student?
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04-27-2013, 01:22 PM
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Yeah, we were trying to stick less expensive credits than U of M. And only one community college is offering her level of Spanish in summer term.
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04-27-2013, 03:14 PM
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Ahh, I see. Depending on where you live, would Oakland U be an option? It looks like they have an 8-week second summer session that could work, depending on what's offered then, and I can't imagine it's anywhere near as expensive as U of M. https://www.oakland.edu/Default.aspx...iendlyUrl=true
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