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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 10, 2018
In reply to @howardjames "Dear Colleen, This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his..." + (show)
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn't feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

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@flo1957, did you see the response that @menville wrote to you here?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 10, 2018
In reply to @flo1957 "Can anyone in this group help me? I don’t know what type of neurologist I should..." + (show)
@flo1957

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!

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Hi @flo1957, welcome to Connect. Noreen, @howardjames, reached out to me recently to say she wasn't getting email notifications from Connect. I'm working on remedying that situation for her. Hopefully she'll be back soon to let you know how she and her husband are doing.

Have you considered going to Mayo Clinic in Florida for a follow-up specifically about the atrophy? The team there will have access to your records from MN and be able to coordinate your care.

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flo1957 | @flo1957 | Aug 10, 2018

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!

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2 replies
menville | @menville | Aug 9, 2018
In reply to @howardjames "Dear Colleen, This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his..." + (show)
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn't feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

Jump to this post

@flo1957 You’re definitely not alone and I was 30 years old when they found mine and deteriorated very quickly. I can tell you how very rare this is, that I have been studied extensively by numerous world-class institutions and I continue to be here to help people like yourself newly diagnosed to help support and provide any wisdom that I may be able to offer. If you can, let me know how your diagnosis came about and what symptoms and questions you are struggling with so that I can directly help explain or give you some information on how to help. If you click on my profile, you’ll see my very first post AND that I am still here, despite being told that I wouldn’t be. I can tell you that having a rare condition is frustrating but fortunately I have fought for a long time to help people like ourselves maneuver through the darkness.

REPLY
flo1957 | @flo1957 | Aug 9, 2018
In reply to @howardjames "Dear Colleen, This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his..." + (show)
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn't feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

Jump to this post

@menville I am new to this group, and somewhat, newly diagnosed. I have so many questions! I am only 60 yrs old. I am having trouble finding doctors who will take me seriously and/or, know anything about Cerebellum Atrophy! I don’t know how to send a private message yet, but, I actually think all public questions, and answers, anyone can provide, would be helpful to everyone who has a reason to read this thread! I would like to thank you all, for sharing your stories with the world! Up until now, I have been suffering alone, not knowing there were others suffering with Cerebellar Brain Atrophy, without a diagnosed cause!
I thank you ahead of time, for any answers and information you can give me!
(It appears that most of the posts are not current. Is this thread still active, or am I alone again?)

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flo1957 | @flo1957 | Aug 9, 2018

@howardjames, I am new to the group. I just noticed that you started this conversation in 2016. How is your husband doing, Noreen? And how are YOU holding up? It takes an unprecedented amount of strength and courage, to be a caregiver, especially for your significant other, and a loved one!

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flo1957 | @flo1957 | Aug 9, 2018

I am so sorry! I failed to indicate that I was responding to @howardjames. I am so sorry to hear of his diagnosis and prognosis, Noreen!
I also wanted to mention, I was diagnosed at Mayo Clinic, Rochester, MN, as well. However, the focus was on the tumor so not much was even discussed about the atrophy. Now that my symptoms are becoming debilitating, I am searching for help in FL (where I currently reside). I am only 60 but may be forced to move back to MN, so my family can help.
I haven’t read through more than the first 4 pages of this thread (yet). I am hoping to read that you have found something that will help your husband. I have been reading good things about stem cell treatments. But that is a very expensive treatment and I don’t believe most insurance companies will cover that cost.
God Bless you and your family, Noreen!

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flo1957 | @flo1957 | Aug 9, 2018

I was diagnosed with lateral hemispheric Cerebellar atrophy in 2017. Does your husband have hemispheric Cerebellar atrophy? If you don’t mind me asking, was his prognosis based on how quickly the atrophy is progressing? I am currently in the process of trying to find a neurologist who specializes is this, as well as diagnosis of the cause. My symptoms are rapidly worsening. The pain (not sure if is related yet), is becoming unbearable. I also have a tumor called a vestibular schwannoma, which I have been told, is not responsible for my symptoms.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 16, 2018

Hello @marysue720 @pec2884 @pec2884 @howardjames and @lisapraska and All Others Interested in Cerebellum Brain Atrophy. It was mentioned in a previous post about Youtube videos regarding treatments for Cerebellar Atrophy. Thanks to mentor, John, @johnbishop here are two of those videos that he found:

Treatment for Cerebellar Atrophy
— https://www.youtube.com/watch?v=PM88OqWk_oY

Ayurvedic Treatment Cerebellar/Cerebral Atrophy
— https://www.youtube.com/watch?v=hy-aR4h9X9c

If you have any comments after looking at the videos, please post them. There is probably some information there that you have experienced.

I look forward to hearing from you.

Teresa

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Judy Gustafson | @1gusto | Jun 16, 2018
In reply to @hopeful33250 "Hello @marysue720 I see this is your first post on Mayo Connect and I would like..." + (show)
@hopeful33250

Hello @marysue720

I see this is your first post on Mayo Connect and I would like to welcome you to Connect and especially to this discussion on Cerebellum Brain Atrophy.

I commend you on your persistence in seeking answers for these varied symptoms. It sounds as if you have been to many doctors and seeking help. I so appreciate it when patients become their own advocates and ignore medical advice which is not helpful, like "you don't know how to walk." That is so important to keep searching for the correct diagnosis.

I see that you are going to Mayo Clinic next. I feel that you will experience a different medical experience there. They treat the whole person, even though there are many specialists they all communicate with each other.

I look forward to hearing from you again and would appreciate your checking in after your Mayo appointment. I would be interested in knowing how you feel about the care you receive at Mayo.

Teresa

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Hello Mary, I have been a patient at Mayo since I went there for a second opinion of my Multiple Myeloma. I have been very satisfied with my care. May God be with you as you find an answer to your health issues.

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