Comment from: 19-24 Female (Caregiver)Published: September 02
My 23 year old daughter was diagnosed with Arnold-Chiari Syndrome when she was 12. At 22, she was diagnosed with hydrocephalus. It is so hard to tell if her symptoms are 'real'. She is only comfortable while lying down, on her left side. It has been so hard to get info, her doctor is supposed to be one of the 'best', but seemed very indifferent once she had surgery to remove C-1 vertebrae. Any help for finding more information would be extremely appreciated!
My son had hydrocephalus from birth. He passed away at the age of 5. The doctors will tell you that they won't need hardly any revisions and that's a lie. My son had 152 revisions and 2 major skull surgeries in 4 years. He developed seizures and was in the hospital more than at home. A lot of families at the hospital were in the same boat as us. The doctors told them tales too. Nothing prepared me for the life I was about to lead. I dearly miss my son it has been 11 years since he passed and it still feels like today.
Comment from: nannie, 19-24 Female (Caregiver)Published: August 06
My granddaughter has aquired Hydrocephalus. Started having headache at the age of 15, had a shunt placed due to hydrocephaus. Her doctor could not find any reason for her condition. Although, she never made good grades in school, was told by the teachers she didn't try and gets easily distracted. She does not seem to have any common sense, and makes bad decisions. She has difficult remembering, and gets angry due to everyone repeating things to her. She didn't finish high school, but tested for her GED beginning her eleventh year in high school. She tested out and passed it. She married at eighteen years old, and recently gave birth to a baby. She is still not responsive, gets angry easily. I notice her frustrations but other family members think she is just immature. She has very low self-esteem. I feel she wants to do better and think she would benefit by attending a support group to understand how to deal with these issues. Most support groups are for younger children, is there any information out there that defines what some of the complications are, and how to deal with things better? Or are these problems just due from being 19 years old.
Comment from: SoCurious2009, Female (Caregiver)Published: July 07
My experience is one of a kind. My little boy has it and he was diagnosed with it at 6 months and got the shunt at 11 months, but see the thing is he can't walk, crawl, hold him self up, nothing. Well he is very smart and charming he has a great personality, but he isn't very mobile now. He has the will and drive to do it all. I just am so confused because I want him to be independent so bad not just for me, but for him. He is going to make a great guy and I want all things to be possible.
Comment from: cephalusphil, 45-54 Male (Patient)Published: July 07
I am 49 years old and was diagnosed with hydrocephalus. The neurosurgeon put in a programmable shunt and everything was great for about 1 1/2 weeks. I began to have abdominal pains and x-rays showed that the drainage end of the catheter was all bunched up in my pelvic area. This is quite painful for a man to deal with. It was affecting my ability to urinate, sleep and was causing irregular bowel movements. After only 7 weeks since the shunt placement, I had to back in for a laparoscopic surgery so that the drainage catheter could be shortened. Now my surgeon thinks that I may have nerve damage from the catheter lying in the pelvic floor for almost 7 weeks. Along with this, I have developed insomnia and can only sleep about 3-4 hours a night, even with the help of Lunesta. If I had it to do all over again, I would never have had the shunt put in. I haven't been to work for 2 months, my emotional state is off the charts. My personality seems lifeless.
Comment from: sunshine, 25-34 Female (Patient)Published: May 08
I was diagnosed with hydrocephalus after a long period of bad headaches that got worse and started to feel pressure in my head. At my six-week check-up, they did my re-scan, and found the cause of the hydrocephalus: I had a brain tumor. I have been through multiple surgeries. I've had a shunt put in, a revision when I started to over-drain, continued with problems, and finally had the shunt taken out. I'm still considered to have "high pressure," but "stable" and opting to not have the shunt put back in. I'm still suffering from pressure head pain. I feel the worst when the pressure outside changes.
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A brain tumor can be either benign (non cancerous) or malignant (cancerous), primary, or secondary. Causes and risk factors include age, gender, family history, and exposure to chemicals. Symptoms range from headaches, leg and feet numbness to seizures. Treatment is dependant upon the type and location of the brain tumor.
A stroke results from impaired oxygen delivery to brain cells via the bloodstream. A stroke is also referred to as a CVA, or cerebrovascular incident. Symptoms of stroke include: sudden numbness or weakness of the face, arm or leg. Sudden confusion, trouble speaking or understanding. Sudden trouble seeing in one or both eyes, sudden trouble walking, dizziness, or loss of balance, and/or sudden severe headache with no known cause. A TIA, or transient ischemic attack is a short-lived temporary impairment of the brain caused by loss of blood supply. Stroke is a medical emergency.
Dementia is a significant loss of intellectual abilities such as memory capacity, severe enough to interfere with social or occupational functioning. There are different criteria classification schemes for dementias such as cortical, subcortical, progressive, primary, and secondary dementias. Other conditions and medication reactions can also cause dementia. Dementia is diagnosed based on a certain set of criteria. Treatment for dementia is generally focused on the symptoms of the disease.
A hematoma is a collection of blood that is outside a blood vessel. There are different areas where hematomas occur including the inside the skull, scalp, ear, septum, bones, finger and toenails, and intra-abdominal. Treatment for hematomas depend on the type and location of the hematoma.
Epilepsy is a brain disorder in which the person has seizures. There are two kinds of seizures, focal and generalized. There are many causes of epilepsy. Treatment of epilepsy (seizures) depends upon the cause and type of seizures experienced.
Concussion is a short-lived loss of brain function that is due to head trauma. There are two types of concussion, simple and complex. Symptoms of concussion include headache, nausea, dizziness, dazed feeling, irritability, visual symptoms. Physical signs include poor concentration, emotional changes, slurred speech, and personality changes. Concussion is diagnosed with physical examination and testing. Treatment for concussion in general are treatment for control of the symptoms, and time.
Toxoplasmosis (toxo) is a parasitic infection that causes flulike symptoms, swollen lymph nodes, and muscle aches and pains that may last from a few days to several weeks. Toxoplasmosis can be contracted by touching the hands to the mouth after gardening, cleaning a cat's litter box, or anything that came into contact with cat feces. Toxoplasmosis can also be contracted by eating raw or partly cooked meat, especially pork or lamb, or touching the hands to the mouth after contact with raw or undercooked meat.
Encephalitis is a brain inflammation that causes sudden fever, vomiting, headache, light sensitivity, stiff neck and back, drowsiness, and irritability. Meningitis is an infection that causes inflammation of the meninges that surround the brain and spinal cord. Symptoms of meningitis include high fever, headache, nausea, vomiting, and stiff neck.
Alcohol intake by a pregnant mother may result in fetal alcohol syndrome (FAS) in her child. A child with FAS may be hyperactive and have a low IQ, a small head, a growth lag, short eye openings, flattened cheekbones, a short nose, a smooth, thin upper lip, shortening of the fourth and fifth fingers, and a heart murmur.
Genetic disease is a disorder or condition caused by abnormalities in a person's genome. Types of genetic inheritance include single inheritance (for example, cystic fibrosis, sickle cell anemia, Marfan syndrome, and hemochromatosis), multifactoral inheritance, chromosome abnormalities (for example, Turner syndrome, and Klinefelter syndrome), and mitochondrial inheritance (for example, epilepsy and dementia).
Birth defects have many causes and currently, are the leading cause of death for infants in the first year of life. Some of the causes of birth defects include genetic or chromosome problems. Exposure of the mother to rubella or German measles during pregnancy, or using drugs or alcohol during pregnancy. The treatment for birth defects depends upon the condition of the effected child.
A common form of short stature, achondroplasia (dwarfism) is a genetic condition causing a disorder of bone growth. Complications of achondroplasia that need monitoring include (this is not all inclusive) stenosis and compression of the spinal cord, a large opening under the skull, lordosis, kyphosis, spinal stenosis, hydrocephalus, middle ear infections, obesity, and dental crowning. Achondroplasia is caused by mutations of the FGFR3 gene.
Seizures are divided into two categories: generalized and partial. Generalized seizures are produced by electrical impulses from throughout the brain, while partial seizures are produced by electrical impulses in a small part of the brain. Seizure symptoms include unconsciousness, convulsions, and muscle rigidity.
Spina bifida is the most common neural tube defect in the United States. There are four types of spina bifida; 1) occulta, 2) closed neural tube defects, 3) meningocele, and 4) myelomeningocele. The cause of spina bifida is not known. Theories include genetic, nutritional, and environmental factors. Lack of folic acid during pregnancy is highly suspected. Symptoms of spina bifida vary from individual to individual. Treatment depends on the type of spina bifida the person suffers.
Kids get headaches and migraines too. Many adults with headaches started having them as kids, in fact, 20% of adult headache sufferers say their headaches started before age 10, and 50% report their headaches started before age 20.
There are six types of generalized seizures. The most common and dramatic, and therefore the most well known, is the generalized convulsion, also called the grand-mal seizure. In this type of seizure, the patient loses consciousness and usually collapses. The loss of consciousness is followed by generalized body stiffening (called the "tonic" phase of the seizure) for 30 to 60 seconds, then by violent jerking (the "clonic" phase) for 30 to 60 seconds, after which the patient goes into a deep sleep (the "postictal" or after-seizure phase). During grand-mal seizures, injuries and accidents may occur, such as tongue biting and urinary incontinence.
Absence seizures cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, most often a child, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usu...
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My 23 year old daughter was diagnosed with Arnold-Chiari Syndrome when she was 12. At 22, she was diagnosed with hydrocephalus. It is so hard to tell if her symptoms are 'real'. She is only comfortable while lying down, on her left side. It has been so hard to get info, her doctor is supposed to be one of the 'best', but seemed very indifferent once she had surgery to remove C-1 vertebrae. Any help for finding more information would be extremely appreciated!
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