Cerebral Brain Atrophy: Anyone else out there?

Hello @ace123
I was noticing that your son had an appointment this week. I hope the appointment provided you with some answers to your questions about your son's condition.

Hello @chiefsfan75

I hope your granddaughter is experiencing some improvement since her hospitalization.

@howardjames Noreen, I have MRIs showing cerebral atrophy, which can be present in a number of brain conditions. The 1st few neurologists told me I did not have what my primary suspected: Hydrocephalus. This is a condition where your cerebral spinal fluid (CSF) does not drain out of your brain like it should, pressure builds on the brain and kills neurons. Finally, I saw a neurologist who knew how to diagnose hydro from an MRI. Such neurologists are rare where I live. Most use tests that have a significant false negative rate: the spinal tap (15% false negatives per my neurologist) and the lumbar drain (lesser false negative rate). Both tests take cerebrospinal fluid out of your spine to reduce brain pressure, and you get a hydro diagnosis if you symptoms improve. Some Drs. want to see more improvement than others. Less informed Drs. sometimes rely solely on this test, when the best practice now is to rule out all other possible brain conditions. Sometimes even respected institutions have some less informed Drs. I would ask the diagnosing Dr. if (s)he ruled out hydrocephalus and on the basis of what. Many of his symptoms can come from cervical myelopathy (bad spine features impacting the spinal cord, possibly because the canal is congenitally narrow). I am wondering if his entire spine has been reviewed and spinal causes ruled out. You might ask. There is at least one case report in the literature of a person with cervical myelopathy getting a misleading report from a lumbar drain as a result of having cervical myelopathy. The title is Cervical Spine Disease May Result in a Negative Lumbar Drainage Trial in Normal Pressure Hydrocephalus. Hydrocephalus is a little better diagnosis than atrophy in that surgery (shunting) can help reverse the downward slide and give you some of your life back--clearer thinking, better gait, cessation of the constant peeing that comes w/ hydro. I had untreated hydro for 22 months and still got rid of a lot of symptoms, although now I am sliding back because of the spine problems that went undiagnosed while everyone was concentrating on the hydro. You have been dealt a difficult hand--it's a good thing that you have an inquiring spirit! Also, you might get a free subscription to a magazine published for patients by the American Academy of Neurology, Brain and Life. It can be read online, but you can also find it online, subscribe and request they mail you hard copy. It can give you a nice perspective on the whole area of brain conditions, and is written at the layperson level. Sorry, as a new member,, I am prohibited from posting links at first. Hope you can find from my information. Will post them later when I am permitted, if I recall. I have short term memory loss from the Hydro.

Thank you for responding. The doctor at Mayo Clinic took many other tests but no spinal tap. He is progressing as the doctor said he would. Wheelchair bound at this time, but he has been tested for gluten and it came back negative.

Unfortunately she isn’t and now they are saying they aren’t going to do the ivig treatments because she wasn’t improving enough. She is now unable to walk at all and her speech is getting worse. We have actually reached out to Mayo Clinic in Minnesota and need to request her medical records before they can move forward 😰😰

I have been diagnosed with an atrophied cerebellum with no obvious cause. A blood test has been sent to the Mayo Clinic.

HI, @alexgoldman2 - welcome to Mayo Clinic Connect.

I'd like to introduce you to some of the other members of this discussion on cerebral atrophy, like @chiefsfan75 @howardjames @ace123 @hopeful33250 @menville and others. I trust some of them will have input for you on their experiences personally or with a loved one with this diagnosis.

In the meantime, here is some information from the National Institutes of Health on cerebral atrophy: https://www.ninds.nih.gov/Disorders/All-Disorders/Cerebral-Atrophy-Information-Page

Have you been experiencing symptoms from this, @alexgoldman2?

I am so sorry to hear that your granddaughter has not improved, @chiefsfan75. It is too bad that her current doctors do not consider it beneficial for her to have the IVIG treatments. What is her age and when did her symptoms begin?

I am glad to see that you are reaching out to Mayo. I hope that you hear some encouraging news on that front.

Will you post again and let me know if she is able to be seen at Mayo?

Hello @alexgoldman2

I would like to join Lisa, @lisalucier, in welcoming you to Mayo Connect. I am sorry to hear of your diagnosis of cerebellum atrophy.

I also would be interested in knowing what type of symptoms you had that your doctors considered this diagnosis and what type of tests were done to come to his conclusion? Have the results from the blood test at Mayo be sent to you doctor yet?

Hello @flo1957 have you tried UNIVERSITY OF SOUTH FLORIDA MORSANI COLLEGE OF MEDICINE in Tampa Fla. https://health.usf.edu/care/neurology 813-974-2201