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Old 06-03-2003, 03:42 PM
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Default Troubleshooting (on me)

I am a 35 year old white female and after testing due to chronic headaches, I have been diagnosed with communicating hydrocephalus.* I had one spinal tap and found the results favorable, although I hear that care must be taken when the fluid is removed, as too much removed causes "additional pain" (great!).* We are now trying Diamox---a glorified diuretic/seizure med.* I am not very fond of the lethargy it causes, and the frequency with which I must run to the Ladies Room, but otherwise it is working.* I am concerned about long-term side effects.

My only alternative, I hear, is a shunt-which I do not want.* Has anyone used Diamox or another brand of it for any length of time?

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Old 06-05-2003, 06:47 PM
infolady infolady is offline
Join Date: May 2003
Posts: 23
Default Troubleshooting (on me)

Thanks for your question, Julie.* Because the forum is brand new you are one of our first users.**Hopefully, your question will be seen by another person who uses the medication and they*can give you their point of view.* Medication effects*each person differently, for side effect information you may want to ask your medical professional.

In the meantime, keep watching the forum to see if anyone has posted their thoughts on the subject.


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Old 11-01-2003, 02:14 PM
Lori Lori is offline
Join Date: Nov 2003
Posts: 0
Default Troubleshooting (on me)

My 10-year-old daughter was born with spina bifida and hydrocephalus. While she has been faced with many challenges throughout her life, she has not had any malfunction of her VP shunt (it was inserted 1 week after birth). For the past year she has been experiencing headaches - sometimes daily, sometimes she'll go 2 weeks without any significant pain. We have been followed closely by Sick Kids Hosp for the past year. Last year her neurosurgeon wanted to revise her shunt although she wasn't exhibiting any symptoms other than headaches and a little tingling in her hands & arms. We decided against the surgery as it seemed completely unecessary - the dr. said she 'might' get worse but she wasn't critical.<br> <br> Her latest CT scan has shown her ventricles are large - the largest they've been. The neurosurgeon wanted to do surgery immediately although he did confirm that she wasn't in immediate danger. He said that she could potential worsen very quickly. We decided against the surgery 2 days ago and are returning to the hospital today for another CT. She doesn't have a headache now nor are there any other symptoms. There is also no enlargement of the optic nerve.<br> <br> As her shunt has been in place for 11 years, I am concerned about bleeding if we go ahead with the this surgery and replace the shunt - which we feel has been recommended prematurely. Last year we experienced the same thing and our daughter was relatively healthy for the entire year despite headaches.<br> <br> Has anyone else experienced this and felt pressure from their surgeon when surgery just doesn't seem necessary yet?<br> <br> Lori
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Old 11-04-2003, 02:55 AM
rose rose is offline
Join Date: Aug 2003
Posts: 0
Default Troubleshooting (on me)

hi everyone

i wanted to ask Julie why she doesn't want a shunt, if there was certain reasons for not getting one?* i was just curious?*

i was also wondering if and this question is for Lori if you have talked to the doctor about your concern of the bleeding?* when mine was done i didn't have any problems with bleeding and this was after having the one*in for more than 10 years.* mine was done at Sick Kids also the new one and revisions.

I have a shunt, and spina bifida.* i did get headaches and*swelling,*i haven't had a lot of problems with it, but i have had to have the shunt revised and changed to a new one, that was done a few years ago and i haven't had a problem since,*my parents and i never felt pressured by doctors to have surgery.*

it has been a few years since any surgeries and i have had the pressure checked a few days ago, and everything is good, i don't get headaches anymore, at least none that are connected to the shunt.

Lori- i think depending on how bad the headaches are and if there is any other problems, - your daughthers attitude changed?* if the headaches are constant maybe something should be done.*

Please don't think i am pushing you, i am just thinking on how i felt with having headaches and my whole attitude changed before the surgery and how i felt after the surgery.*

If you read this thank you, and again i am not pushing, just talking about my feelings.




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Old 11-08-2003, 05:07 PM
minniemay minniemay is offline
Join Date: Jul 2003
Posts: 0
Default Troubleshooting (on me)

Hello everyone,

I have had a shunt since I am four and a half months old. Until March of this year, I led a normal life. I skiied, played golf, swam, drove a car, went to school and travaled at least twice a year. However, this year I had ten surgeries. The last one took place November 3rd.

Having a shunt is not the end of the world. Some years will be more difficult than others, while most will be pleasant. You just have to keep smiling, stay brave and say to yourself that this isnt't a brain tumor we are talking about here. Hydrocephalus can be controled.

Good luck and stay strong!*I hope to here good news from you soon!

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