1. < Stroke & Cerebrovascular Diseases

Cerebellum Atrophy

Posted by howardjames @howardjames, Jun 5, 2016

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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

alexgoldman2 | @alexgoldman2 | Aug 12, 2021
In reply to @hopeful33250 "Hello @alexgoldman2 I would like to join Lisa, @lisalucier, in welcoming you to Mayo Connect. I..." + (show)
@hopeful33250

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?

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Hello, I have undergone 2 MRI's and several blood tests, XRays, etc. No help! Alex

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1 reply
pettis | @pettis | Jul 10, 2021
In reply to @larryh123 "Thanks for the info and willingness to share info on your conditions and giving potential info..." + (show)
@larryh123

Thanks for the info and willingness to share info on your conditions and giving potential info for @pettis
I will share a little. Both of my grandsons were born with hydrocephalus They were able to shunt both of them in their first week of life. One is 5 and is thriving. The other is 3 months and doing well.

I am intrigued by the gene you mentioned for the hydrocephalus. Is that an Autosomal recessive type of gene?

Peace
Larry H

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I do not have a gene for hydrocephalus. My genetic test results are normal.

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keithl56 | @keithl56 | Jul 8, 2021
In reply to @keithl56 "At this point I'm limiting my activity somewhat. Today's EKG showed some differences from the last..." + (show)
@keithl56

At this point I'm limiting my activity somewhat. Today's EKG showed some differences from the last but it could be that my blood pressure was so low and my heart was working harder. I'll feel better once I get the holter monitor results. Thanks for asking.

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Update - this morning my cardio called and they scheduled me to have an implantable loop inserted on Monday. I am pleased at how responsible my whole care team has been.

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Larry | @larryh123 | Jul 8, 2021
In reply to @oldkarl "@larryh123 Hi, @Larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a..." + (show)
@oldkarl

@larryh123 Hi, @larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a lot of 'stuff' on the 500+ genes OMIM lists for involvement in hydrocephalus. Some are recessive, most are dominant. This source is free, and targeted toward professionals, but I am on it almost every day. Another great source is Jackson Lab's human phenotype O (I cannot right now remember the word for O) http://hpo.jax.org for hydrocephalus. Jackson is quite proud of their work in this, and rightfully so. These two will lead you toward legitimate info on almost any gene. More later. oldkarl

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@oldkarl - Thanks for the great info.
I will be looking at to learn more about hydrocephalus. Since my grandsons were born with it, I have ben hungry for more information.
Your words "legitimate info"are so true. There issue much information to sift through and so much of it is "noise"

I know your posts will help others.

Peace
Larry H

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oldkarl | @oldkarl | Jul 8, 2021
In reply to @larryh123 "Thanks for the info and willingness to share info on your conditions and giving potential info..." + (show)
@larryh123

Thanks for the info and willingness to share info on your conditions and giving potential info for @pettis
I will share a little. Both of my grandsons were born with hydrocephalus They were able to shunt both of them in their first week of life. One is 5 and is thriving. The other is 3 months and doing well.

I am intrigued by the gene you mentioned for the hydrocephalus. Is that an Autosomal recessive type of gene?

Peace
Larry H

Jump to this post

@larryh123 Hi, @larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a lot of 'stuff' on the 500+ genes OMIM lists for involvement in hydrocephalus. Some are recessive, most are dominant. This source is free, and targeted toward professionals, but I am on it almost every day. Another great source is Jackson Lab's human phenotype O (I cannot right now remember the word for O) http://hpo.jax.org for hydrocephalus. Jackson is quite proud of their work in this, and rightfully so. These two will lead you toward legitimate info on almost any gene. More later. oldkarl

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2 replies
Larry | @larryh123 | Jul 8, 2021
In reply to @howardjames "We have been trying to connect with anyone who also has a diagnosis of cerebellum brain..." + (show)
@howardjames

We have been trying to connect with anyone who also has a diagnosis of cerebellum brain atrophy. How long have you had diagnosis and what was prognosis? Howard got diagnosis from Mayo Clinic in Rochester, Minn. in January of 2015. At that time there was a time line of 3 to 4 years to live. Any information would be appreciated.
Howard and Noreen

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Hello Howard and Noreen:
I can understand about being frustrated trying to find people that share the diagnosis cerebellum brain atrophy.

I an working to do some research on this.

Yourself and @pettis are looking information and others to connect with.

Colleen has tagged many of the folks that have chimed in on this thread to bring those folks back to share any updates, things they may have learned and for support.

How long did it take you from the time you saw the doc to the time of diagnosis?

Peace
Larry H

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Larry | @larryh123 | Jul 8, 2021
In reply to @oldkarl "Quick answer, and more later. First, what kind of genetic test did you have? Full genome..." + (show)
@oldkarl

Quick answer, and more later. First, what kind of genetic test did you have? Full genome or 1%? What is the specific name of your issue. I have "disappearing white matter in my cerebrum, as well as in area 24 and 9." This is genetic. Second, Hydrocephalus is genetic, and I have the gene. Get yourself a full genome analysis from professionals, such as at Dante, Sequencing.com, Ambrygen.com, etc. You have to get help now. Medicare is covering most of this, if the clinic and lab are certified and your doc signs off. Old Karl ps. I will be glad to look up the gene(s) of hydrocephalus I have, if you have not done so.

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Thanks for the info and willingness to share info on your conditions and giving potential info for @pettis
I will share a little. Both of my grandsons were born with hydrocephalus They were able to shunt both of them in their first week of life. One is 5 and is thriving. The other is 3 months and doing well.

I am intrigued by the gene you mentioned for the hydrocephalus. Is that an Autosomal recessive type of gene?

Peace
Larry H

REPLY
2 replies
keithl56 | @keithl56 | Jul 7, 2021

At this point I'm limiting my activity somewhat. Today's EKG showed some differences from the last but it could be that my blood pressure was so low and my heart was working harder. I'll feel better once I get the holter monitor results. Thanks for asking.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 7, 2021
In reply to @keithl56 "Not great. I lost my balance and fell on my patio on Sat. and then passed..." + (show)
@keithl56

Not great. I lost my balance and fell on my patio on Sat. and then passed out and did a face plant in my yard Sunday resulting in a bloody nose and an ambulance ride to the hospital. EKG this pm and another MRI and holter monitor. Trying to figure out f is my CAD or white matter disease causing all these problems. I'm hoping it's cardio because then there might be something they can do for me.

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Keith, I do hope that you'll get answer soon to the root cause. That sure must've hurt to take such hard falls on hard surfaces. Until you're able to get things figured out, what precautions are you taking to prevent further falls? A walking aid?

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keithl56 | @keithl56 | Jul 7, 2021

Not great. I lost my balance and fell on my patio on Sat. and then passed out and did a face plant in my yard Sunday resulting in a bloody nose and an ambulance ride to the hospital. EKG this pm and another MRI and holter monitor. Trying to figure out f is my CAD or white matter disease causing all these problems. I'm hoping it's cardio because then there might be something they can do for me.

REPLY
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