What causes too much Cerebal Spinal Fluid (Hydrocephalous)? Fix?

Posted by shanehall @shanehall, Aug 14 9:54am

My mother had a Cerebal Spinal fluid leak that they fixed after 3 exploratory surgeries and a patch. She now has too much fluid in her brain because her body was trying to compensate for loss of fluid so now it is making to much. This had been the case for years now. Does anyone know how to fix this?

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@shanehall Hello and welcome to Connect. I can relate some experience with my father in law a few years ago. He developed hydrocephalous with increased pressure on the brain from spinal fluid in his elderly years. He had surgery that placed a shunt to drain the excess fluid from the brain. Here is the Mayo Clinic information about Hydrocephalous and treatment.
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604
Has your mother had a personality change or loss of balance? Has she been evaluated by a neurologist?

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@jenniferhunter

@shanehall Hello and welcome to Connect. I can relate some experience with my father in law a few years ago. He developed hydrocephalous with increased pressure on the brain from spinal fluid in his elderly years. He had surgery that placed a shunt to drain the excess fluid from the brain. Here is the Mayo Clinic information about Hydrocephalous and treatment.
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604
Has your mother had a personality change or loss of balance? Has she been evaluated by a neurologist?

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She has had a major personality change. She is the most irratable person ive evet met after they patched her up. Walking on egg shells 24/7. She hasnt lost balance and she has been evaluated and thats how they found out she had too much fluid. But then the doctors told her there was nothing they could do about it .
Thanks for the info!

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@shanehall

She has had a major personality change. She is the most irratable person ive evet met after they patched her up. Walking on egg shells 24/7. She hasnt lost balance and she has been evaluated and thats how they found out she had too much fluid. But then the doctors told her there was nothing they could do about it .
Thanks for the info!

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@shanehall I'm sorry, as I know this is very difficult for the family when someone changes. This isn't a difficult surgery to get a shunt, and it isn't uncommon. It sounds like her providers are avoiding it. She may need another opinion from a neurologist who works with problems in elderly patients. I'm glad you reached out here. In my father in law's case, he was an Alzheimers patient in a nursing home, and the nursing home suggested the surgery because he was aggressive and combative. It may have helped a little, but the Alzheimers may have been causing the aggression too.

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@jenniferhunter

@shanehall I'm sorry, as I know this is very difficult for the family when someone changes. This isn't a difficult surgery to get a shunt, and it isn't uncommon. It sounds like her providers are avoiding it. She may need another opinion from a neurologist who works with problems in elderly patients. I'm glad you reached out here. In my father in law's case, he was an Alzheimers patient in a nursing home, and the nursing home suggested the surgery because he was aggressive and combative. It may have helped a little, but the Alzheimers may have been causing the aggression too.

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Thanks! i appreciate the help!

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I too had a CSF leak repaired. After surgery my body was confused about how much fluid to produce and it over produced causing intercranial hypertension. I couldn’t lay flat for quite a while because of it. I was offered Diamox but chose not to take it right away, hoping it would correct itself. During that time, on the CSF leak Facebook page I read where a neuro-radiologist at Mayo had his patient try Benadryl or Dramamine (original formula) to reduce the pressure. I tried them both and the Dramamine worked great for me. Took one at night and one mid afternoon. I took it about six months and was able to go off if it. The only time I have trouble with it now is during big barometric changes and that’s just for a day or too. I also have to keep my caffeine to a minimum, no alcohol and keep my fluid intake under 65 ounces a day, which probably varies in each person.
My leak went on so long and got so big that it deposited a lot of blood on my brain and spine, causing me to have superficial Siderosis, which is a whole new set of problems but has some of the same symptoms.
I hope you get some answers, it’s a miserable place to be.

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I also have superficial siderosis (SS). SS can be caused by a continuous leak or a trauma. They have attempted to find the cause in my case . They have found evidence of a spinal fluid leak in the past, but it did not show evidence of a leak presently. I have also had several serious falls in which my head struck hard surfaces and caused me to black out. One of the side effects is ataxia and I have extreme difficulty walking, having lost my sense of balance. There is a very good site for other sufferers called Living with SS. Unfortunately, there is no cure. They are testing chelation therapy with very mixed results. I joined this site in hopes of finding more information on corrective measures, cures, relief from symptoms and I welcome any new information. I do have one word of advice for people with ataxia from SS, exercise. I was very active before this; walking, jogging, long distance biking, all of which I could no longer do, so I bought a treadmill and a tricycle and try to workout daily, so I do not lose my mobility. Good luck with your condition.

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