1. < Stroke & Cerebrovascular Diseases

Cerebellar Stroke - experience/treatment/recovery

Posted by strokesurvivordynamo @strokesurvivordynamo, Apr 21, 2017

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

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

Brightwings AKA Cute Susie | @brightwings | Apr 27, 2019
In reply to @brightwings "Hello, I am Bright Wings. I have been active here at mayo clinic connect since last..." + (show)
@brightwings

Hello, I am Bright Wings. I have been active here at mayo clinic connect since last year. I was getting off my antidepressant of 33 years and was still having withdrawal symptoms months later.
I also write in a group for multiple sclerosis.
But now I need to be here. And I am terrified.
As a young nurse I put a LAW in place that if I had a full on disabling stroke and got put in a nursing home I would choose to die. That policy is still firmly in place, I see.
As a result of going cold turkey when withdrawing from effexor, I had a full on brain event caused by nightmares from the withdrawal.
I dragged myself and my foot to the door, left hand clenched and useless, while drooling.
I completely recovered in less than an hour.
I am here because I had another brain event Thursday. Different this time. But I see it as a huge warning. I will come back and post about this new event in a bit.
So this is my story. I will get to reading. Bright Wings
I see you are here with me @merry, thanks

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Ok, I have been reading for hours. I have used up all my energy and have to stop.
I wrote notes of things others said that I relate too.
I am experiencing brain flooding right now and I will be back.
Bright Wings who is not as scared now.

REPLY
phughes814 | @phughes814 | Apr 27, 2019
In reply to @brightwings "@phughes814 Oh my gosh I am so happy to read this. You sing the same song..." + (show)
@brightwings

@phughes814
Oh my gosh I am so happy to read this. You sing the same song I do and it makes me feel in good hands. Thank you so much.
I too an too busy and REFUSE to live in fear, but I am afraid right now. And its better to recognize this than ignore it.
I know that by taking an action I am more in control of my life. So I came here cuz I have very pointy ignored this field cuz of my fear as a young nurse.
I'm 68 years old now. Worked hard to recover from issues that started in childhood. Now this....Bright Wings

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I wake up everyday in a positive state of mind, I always have. My wife of 40 years doesn't understand how i do it but nonetheless its who I am.
In October of 2018 I was on the road for work when the first symptoms occurred, light headedness and my right side carotid artery throbbing I sat down and it went away a few minutes later so I ignored it. The next morning I went to the jobsite to meet with my crew and before I saw anyone the symptoms returned but with dizziness and this is what scared me. After taking an aspirin I had one of my guys take meet to a local Hospital where they performed a CT scan. A few hours later I was informed of the blockage in my brain. I was 59 at the time and for the first time in my life concerned about mortality. I didn't tell the physician but I flew home the next day because my family was in Arizona and if something was going to happen I wanted to be with them. I went to work the next day and sat down with the two owners I work for and they jumped in immediately to help me and I will always be grateful to them for being by my side.
Two days later the symptoms returned and again I found myself in the emergency room. Another scan, am MRI and several hours later I'm being informed of the several mini-strokes that have occurred two I was aware of and the rest completely shocked me. I was completely unaware there were no symptoms. I was released that day with prescriptions and a plan yet still thinking it was only a matter of time before the big one occurred. I googled that night and confirmed it a big mistake. I was more frightened yet concerned about how I was going to prepare my family for what could eventually occur. I felt like time was running out.
I met with my neurologist two weeks later and after informing him of my new found medical profession he realized I had been Googling and immediately asked me to stop. He was right, its of no benefit to us we aren't the physicians they are. From that point on I became the model patient following their direction and am on the positive road to recovery.
As I write this article I am sitting in a lawn chair alongside my wife of 40 years and my oldest daughter watching my youngest daughter coaching special needs children in a game of soccer. The lights have just come on and its an awsome sunset. Life doesn't get better than this!

REPLY
1 reply
Brightwings AKA Cute Susie | @brightwings | Apr 27, 2019
In reply to @phughes814 "I wake up everyday in a positive state of mind, I always have. My wife of..." + (show)
@phughes814

I wake up everyday in a positive state of mind, I always have. My wife of 40 years doesn't understand how i do it but nonetheless its who I am.
In October of 2018 I was on the road for work when the first symptoms occurred, light headedness and my right side carotid artery throbbing I sat down and it went away a few minutes later so I ignored it. The next morning I went to the jobsite to meet with my crew and before I saw anyone the symptoms returned but with dizziness and this is what scared me. After taking an aspirin I had one of my guys take meet to a local Hospital where they performed a CT scan. A few hours later I was informed of the blockage in my brain. I was 59 at the time and for the first time in my life concerned about mortality. I didn't tell the physician but I flew home the next day because my family was in Arizona and if something was going to happen I wanted to be with them. I went to work the next day and sat down with the two owners I work for and they jumped in immediately to help me and I will always be grateful to them for being by my side.
Two days later the symptoms returned and again I found myself in the emergency room. Another scan, am MRI and several hours later I'm being informed of the several mini-strokes that have occurred two I was aware of and the rest completely shocked me. I was completely unaware there were no symptoms. I was released that day with prescriptions and a plan yet still thinking it was only a matter of time before the big one occurred. I googled that night and confirmed it a big mistake. I was more frightened yet concerned about how I was going to prepare my family for what could eventually occur. I felt like time was running out.
I met with my neurologist two weeks later and after informing him of my new found medical profession he realized I had been Googling and immediately asked me to stop. He was right, its of no benefit to us we aren't the physicians they are. From that point on I became the model patient following their direction and am on the positive road to recovery.
As I write this article I am sitting in a lawn chair alongside my wife of 40 years and my oldest daughter watching my youngest daughter coaching special needs children in a game of soccer. The lights have just come on and its an awsome sunset. Life doesn't get better than this!

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@phughes814
Thanks for sharing that. I too am a very positive person. And I also respect that a disabling stroke is the one thing I am truly afraid of.
I love the picture you present, sitting with your family enjoying life. Thank you for sharing this wonderful story with me. Bright Wings

REPLY
1 reply
Brightwings AKA Cute Susie | @brightwings | Apr 27, 2019
In reply to @brightwings "@phughes814 Thanks for sharing that. I too am a very positive person. And I also respect..." + (show)
@brightwings

@phughes814
Thanks for sharing that. I too am a very positive person. And I also respect that a disabling stroke is the one thing I am truly afraid of.
I love the picture you present, sitting with your family enjoying life. Thank you for sharing this wonderful story with me. Bright Wings

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It makes me realize once again, living the life you want is all about choice. BW

REPLY
Mentor
Merry, Volunteer Mentor | @merpreb | Apr 28, 2019

Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung Cancer and Lung Health and Anxiety and Depression. Although I will peek in on other sites from time to time.I am on here for the first time because I led @brightwings here. I know that you have met her by now. I thought to myself that, hey, I should be on here too.
About 2 1/2 years ago I started to have very weird experiences. I had double vision and large black holes when my eyes were open.I needed a new neurologist and I met with a PA. She was just terrific. She picked up some signs and had me get a head CT scan. Because of her astuteness she saved my life. There was more than 50% stenosis in my right common artery. Although it took me quite a while to get into see a doctor at MGH (Mass General Hospital) where I am treated for all major illnesses, I finally got an appt and after many many tests I was scheduled for a stent.
I have a history at MGH because I am a 22 year lung cancer survivor. My first lung cancer was treated by a surgeon at RI hospital and when he moved to MGH I followed him. I am a 4 time survivor of what is called Multifocal Adenocarcinoma of the lungs. This means that I get more than one nodule at a time. They are indolent and when they change they have to come out.
I will read posts here, but I'm sure that this is a site that I should be on. This Friday I have my 2nd year follow-up. And yes, I am nervous.

REPLY
2 replies
Brightwings AKA Cute Susie | @brightwings | Apr 28, 2019
In reply to @merpreb "Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung..." + (show)
@merpreb

Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung Cancer and Lung Health and Anxiety and Depression. Although I will peek in on other sites from time to time.I am on here for the first time because I led @brightwings here. I know that you have met her by now. I thought to myself that, hey, I should be on here too.
About 2 1/2 years ago I started to have very weird experiences. I had double vision and large black holes when my eyes were open.I needed a new neurologist and I met with a PA. She was just terrific. She picked up some signs and had me get a head CT scan. Because of her astuteness she saved my life. There was more than 50% stenosis in my right common artery. Although it took me quite a while to get into see a doctor at MGH (Mass General Hospital) where I am treated for all major illnesses, I finally got an appt and after many many tests I was scheduled for a stent.
I have a history at MGH because I am a 22 year lung cancer survivor. My first lung cancer was treated by a surgeon at RI hospital and when he moved to MGH I followed him. I am a 4 time survivor of what is called Multifocal Adenocarcinoma of the lungs. This means that I get more than one nodule at a time. They are indolent and when they change they have to come out.
I will read posts here, but I'm sure that this is a site that I should be on. This Friday I have my 2nd year follow-up. And yes, I am nervous.

Jump to this post

Good for you Merry. Welcome...and get to reading. Giggling
Now that may sound off to be giggling she is here, but Merry and I have known each other for about a year at another group for withdrawing from Effexor.
Merry, I also want to say, I have the utmost respect for you.
Wow, girl, you have really been thru it, haven't you?
So many different challenges, anyone of them could have taken you out.
Pssst, I am going to let you join my club...The Energizer Bunny Club.
Why Cuz like me, you are just like the energizer bunny...We keep going and going and going...life is so much sweeter that way, right?
Smiling at you with tenderness, Bright Wings

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 28, 2019

May 1. For all in the Cerebellar Stroke Discussion group, please take a look at the link below that gives information about Mayo's Video Q & Q about strokes. If you click on the link you can register for the Video and also post questions that will be answered by the doctors. If you are not available for the May 1 Video you can watch it afterward. It will be available for retrieval to watch at a more convenient time.

https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/?utm_campaign=hub_email&utm_source=email&utm_medium=digest_card_title_link
REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 28, 2019
In reply to @merpreb "Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung..." + (show)
@merpreb

Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung Cancer and Lung Health and Anxiety and Depression. Although I will peek in on other sites from time to time.I am on here for the first time because I led @brightwings here. I know that you have met her by now. I thought to myself that, hey, I should be on here too.
About 2 1/2 years ago I started to have very weird experiences. I had double vision and large black holes when my eyes were open.I needed a new neurologist and I met with a PA. She was just terrific. She picked up some signs and had me get a head CT scan. Because of her astuteness she saved my life. There was more than 50% stenosis in my right common artery. Although it took me quite a while to get into see a doctor at MGH (Mass General Hospital) where I am treated for all major illnesses, I finally got an appt and after many many tests I was scheduled for a stent.
I have a history at MGH because I am a 22 year lung cancer survivor. My first lung cancer was treated by a surgeon at RI hospital and when he moved to MGH I followed him. I am a 4 time survivor of what is called Multifocal Adenocarcinoma of the lungs. This means that I get more than one nodule at a time. They are indolent and when they change they have to come out.
I will read posts here, but I'm sure that this is a site that I should be on. This Friday I have my 2nd year follow-up. And yes, I am nervous.

Jump to this post

Praying for good results for you, @merpreb. Last week, I had my EGD for carcinoid tumors and all was good! Wishing the same for you!

REPLY
1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Apr 29, 2019

@hopeful33250- Oh what a relief you must feel. You had carcinoid tumors in your brain?

REPLY
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