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.

Profile picture for oldkarl @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

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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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Profile picture for keithl56 @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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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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Hi all,
@pettis @howardjames @alexgoldman2 @pec2884 @dmkmom04 @tonyc55 @ldrake101 @menville @flo1957 @07851930740 @ace123 @pathakes @adrenaline @lupita1407 @silverlinning @idfiddler @oldsuzanne55 @helenfrances @keithl56 @avmcbellar

I wanted to re-animate this discussion. Any updates to share? How are things in the corner of your world? How are you doing today?

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Profile picture for alexgoldman2 @alexgoldman2

i'VE YET TO FIND folks with whom I have discusses cerebellum atrophy in the past. Alex

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Hi Alex,
Here is the active discussion where you were connecting with others:
– Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

Click the link to get started and post a reply.

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome to Connect, @dkeg. We're glad you found this discussion group. In addition to @howardjames (Noreen) who's husband has Cerebral Atrophy and @lisapraska who's young son is living with it, I'd like to introduce you to @pec2884 (Liz) who lives with cerebellar atrophy. You can read more conversations between Liz and Noreen here:

- Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

DKeg, the dreams and hallucinations must be troubling. How do they affect you and how to you cope with that?

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i'VE YET TO FIND folks with whom I have discusses cerebellum atrophy in the past. Alex

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Profile picture for Amanda Roe @amandajro

Hello @pettis and welcome to Mayo Clinic Connect. I can read the struggle in your post and can understand your frustration. I am hoping members like @howardjames and @oldkarl can come back to the discussion to share their experiences and connect with you.

When was the last time you were in touch with your team in Jacksonville?

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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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Profile picture for pettis @pettis

I have it too. I don’t think there is any cure or help for us. Mayo Clinic in Jacksonville showed me an x ray of my decreased cerebellum and suggested it was genetic. Had genetic test and it’s not genetic. Then why? I have been offered no hope or explanation. I have always lived a healthy lifestyle- walked every day, good heart and kidneys, no smoking or alcohol. Strange about the silence from doctors. Makes you mad, doesn’t it? No answers. I simultaneously developed Hydrocephalus (no reason given. Had a shunt placed in brain. Thinking got clearer but ataxia is worse. I tried stem cell therapy, but won’t know if it will work until October, since results come 6 months after treatment. My heart goes out to you and I would love to hear from you. The idea of slowly declining with no help on the horizon, and assisted suicide illegal, is beyond my idea of horrible. And yes, you sure do feel alone. Please let me know how you are.

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Hello @pettis and welcome to Mayo Clinic Connect. I can read the struggle in your post and can understand your frustration. I am hoping members like @howardjames and @oldkarl can come back to the discussion to share their experiences and connect with you.

When was the last time you were in touch with your team in Jacksonville?

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Profile picture for pettis @pettis

Terrible for you, so sorry. I have the damage to my cerebellum also, but no one ever gave me an idea of how long I would live. At least it’s not painful. Do you experience pain?

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No pain, thank God, but most of my questions to doctors elicits the answer “I don’t know”. I get the awful feeling that I could live for years, declining all the while. Frankly, I would rather be dead. I’ve lived an eventful life and have “seen the show”. Of course there is no option for this in Florida. I think it’s cruel. But no pain so far. Let me know how you are doing..

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