diamox to decrease brain pressure

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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diamox to decrease brain pressure

Postby kelseysmom » Wed Mar 03, 2010 10:40 pm

My 10 yr old daughter was diagnosed with chiari in Dec 09 and we just had our first visit with a neurosurgeon. He is opting not to do surgery now because she does not have any symptoms other than papilledema and eye pain. Her neuro-opthamalogist said we could put her on diamox to decrease brain pressure, which is causing the papilledema. Just wondering if anyone has any experience with diamox?
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Re: diamox to decrease brain pressure

Postby lttutrow » Thu Mar 04, 2010 1:16 am

I think with the swelling of the optic nerve, I might be looking for a second opinion from a different nsg. Did they do a full spine and cine flow mri as a part of her initial work up?
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Re: diamox to decrease brain pressure

Postby kelseysmom » Thu Mar 04, 2010 2:24 pm

They did do a full spine MRI, but not a CINE MRI.
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Re: diamox to decrease brain pressure

Postby lttutrow » Thu Mar 04, 2010 2:38 pm

Have they talked about doing an lp to figure out what her current csf pressure is? Is the nsgs. plan that Diamox is a long term solution to lower the icp? You might want to check out www.ihrfoundation.org .
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Re: diamox to decrease brain pressure

Postby Sara » Thu Mar 04, 2010 2:52 pm

Diamox can lower pressure but if it caused by chiari then it will likely persist. But perhaps she will respond. My daughters took diamox for a long time, until they could not tolerate it anymore. It can be harsh on the stomach, and my children developed an alergy to it. But it did work as long as they took it in high enough doses. A lumbar puncture may be contradicted in an untreated Chiari patient, which could be why your physician does not want to order one. Who is your surgeon? I think it is always a good idea to get a second opinion matters like these.

a large children's hospital usually will have an experienced nsg.
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Re: diamox to decrease brain pressure

Postby chiarithree » Thu Mar 18, 2010 7:45 am

Hello, I have had PTC, have had spinal taps, and also decompression. My NS would not do the decompression during the bout of PTC simply because the high pressure would complicate the surgery especially if you are putting in a durapatch. I just had this experience with my decompression. They did an intracranial pressure monitor first (hole in the skull and a monitor placed to check pressures). It is true that spinal taps are very dangerous for a chiari patient, and even more so with PTC complicating things. My NL had told me to never do a spinal tap unless I was decompressed.

I had my decompression in December, developed meningitis from the patch material. They did a spinal tap when I was in the emergency room and found that my spinal pressure was then elevated again (due to the inflammation and reaction) and I was put on diamox for a cuople weeks before they were able to go back in and replace the patch, in my case this patch caused the PTC to return. I had 4 spinal taps while in the hospital but this was after decompression. They had to wait until the pressure was down or it would have "blown out" that patch.

It would be my guess that this might be a reason your surgeon doesn't want to do surgery. But PTC and Chiari seem to go hand in hand, as many of us have it as well.

The papilladema and eye pain are serious enough, he/she should be checking her very frequently too to make sure that diamox is working, I was followed like every 2 weeks at one point on a previous "bout" of it.

Best wishes for you and your daughter, you have our prayers.
www.chiari1dx.blogspot.com
Chiari 1 (7mm), Syringomyelia, PTC, Empty Sella, Familial Essential Tremor, UCTD, Hashimoto's Thyroiditis. Decompressed Dec. 09, 2nd Surgery Feb 10 due to bovine collagen patch reaction.
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Re: diamox to decrease brain pressure

Postby tnajk » Tue Mar 30, 2010 11:32 pm

Diamox did not work for my son. He ended up getting an LP Shunt. I really hope the diamox works for your daughter! There's another med they can probably try too if the diamox doesn't work. The name of it escapes me at the moment? I wouldn't wish a shunt upon my worst enemy. We've had nothing but problems with the darn thing. :-(
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
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