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My husband has been diagnosed with cerebral atrophy. Is there anyone with similar diagnosis? In January of 1915 he was given 3 to 4 years to live.
My son just turned 30 and was diagnosed with Cerebral brain atrophy. We see a neurologist tomorrow to explain this. I am terrified and dont know what to expect
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My husband has been diagnosed with Cerebral Brain Atrophy. He was diagnosed at Mayo Clinic. He was given 3 to 4 years to live. At that time he was walking with no problems. It effects the balance and speech, and swallowing . He is now in his 4th year. He is wheelchair bound and has more trouble with swallowing. The doctor at Mayo said he would probably die of
Aspiration pneumonia as he has trouble swallowing.
I am so sorry about your son. My husband is 79 and at least this did not happen while he had a job and child in college. We are very grateful for that!
Please keep me informed. We have only found one other person who has this and she is in South Africa. I wrote to Colleen why there weren't more with this diagnosis and she said that it's very rare.
Noreen (wife of Howard James)
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.
My granddaughter just recently got out of the hospital again they gave her 5 days of ivig treatment with a steroid iv boost. She goes back October 2 to see if it will help slow down progression and help the ataxia at all
I hope your granddaughter is experiencing some improvement since her hospitalization.
I haven’t contacted dmkmom04, but did contact the lady in South Africa. She sounded as though her diagnosis was similar to my husbands. My husband is grateful that he is 78 and not younger with a job and kids in college.
Thank you for this method of taking to other people with same diagnosis. I give my husband many vitamins as I know after he is deceased they will discover that brain atrophy was caused by a lack of some wierd vitamin.
@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 still have not heard from anyone else having cerebral atrophy diagnosis. Does anyone out there have a similar problem. Should we go anywhere else beside Mayo Clinic?
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?
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?
Can anyone in this group help me? I don’t know what type of neurologist I should be looking for. I live in Florida. Can anyone recommend someone?
Mayo Clinic originally found the condition, however, they were focused on the brain tumor and never even discussed the atrophy! But now that my symptoms have become debilitating, it’s become clear, I need to address this issue ASAP!
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
Hi Noreen. I have been reading about your husband. How is he doing now? Is all very sad and my thoughts are with you both. My mum is 70 next year and has just been diagnosed with this. It's taken a long time (3 years) for diagnoses. She started swaying around 4 years ago, jump to today and she can't even walk with a frame. Her body goes into spasms, even freezes. Her right side is effected more, her arm and leg feeling dead. She has had a stair lift fitted and next few weeks a wet room too. She gets so angry and it's heart breaking to see her like this at all. We have been told of life expectancy at all. She has other conditions including conduction disease and needs something fitted. We know it's a rare condition and here in the UK the doctors are very vague. She recently had a DNA test done to determine if it's Genetic (she was adopted and didn't ever know her real parents) so awaiting results. Her speech is sometimes a little slurry but when she is tired. We don't know how long or how bad this gets but the more research I do, the more heart breaking the reality becomes. Thinking of you and your husband, hope you are ok x
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