Vermis cerebellum

Hey Debbie,
I look at it all as ‘we all have our load and this is mine’. For many years I worked with people with disabilities, some of them in a much worse situation than me. So, yea, things could be better for me, but by the same accord things could so be a hell of a lot worse and I’ve gotta be thankful they’re not.

I too wish I could do without the meds and I try my damnedest to keep them to a minimum but the reality is I haven’t been able to eliminate them from my diet. It’s my view that we use what works for us. I’ve had all sorts of Dr’s/specialists/wizards all profess they have the ‘key’ (none of them have), so now I have to manage all of this for me, not them. And if that’s meds, so be it.

Having a ‘significant other’ on this journey with you is a blessing. I have no clue how I’d have survived this long without mine. In fact, I doubt I would have survived at all. But, in my defence, I did warn her ‘If you sign that piece of paper (marriage certificate) you do realize it’s a life sentence’ and STILL she signed it :rofl:

Merl from the Modsupport Team

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Lol. I’m sure she’s glad she did too!
Yes I’ve been a school bus driver for special needs for 30 yrs. I had just retired and 6 mths later this happened. I was thinking that has helped prepare me for this. I’ve loved so many of those kids with such hard lives. Just getting ready and out to the bus was enough to call it a day! It does help to think of others struggling with much harder things in their lives to deal with. I wish they could be well. I can walk and talk. I’m a little slower,but I can. It’s good to remind ourselves of all those things when we are down or feeling sad about our situation. If we can.
Thanku for your response. It was great!!

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It’s a learning experience for all of us. It sounds like he’s learning, too, which is excellent.

I think it’s normal for family and friends who don’t “get it” to be flippant about our progress but it is mostly ignorance or innocence and maybe that’s ok. However, it’s good to find people (including here) that do understand the ups and downs of recovery.

As Merl has said, you’re sooooo early in your recovery you really mustn’t be perturbed by not being as well as you’d like. 5 weeks is still the beginning. It’s good to hear how you feel because there’s a learning about what matters and what doesn’t matter so much that we can hear in your posts. Just keep on, head up, be patient, steady as you go, and get the help you need along the way. Honestly you sound in a good position. Very encouraging!

Best wishes,

Richard

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Thanku Richard. I was just sitting here thinking how lazy I feel and wish I could do something. But honestly, I can’t. It’s those feelings of feeling so lazy that I hate. I’ve always been such a hard worker and not only held a job for 30 yrs but did all the household work and the yard work. How? I don’t know as I think back on it. Now I look at my yard and think I did so well but always felt like I needed to do more. Crazy!! It’s gorgeous out there when spring comes. I’m looking forward to sitting out there and enjoying it.
Thanku it’s nice to be reminded it’s very early still!

One of the things that Merl will tell you is to take it easy. It is exactly NOT the right thing to do to push yourself to do more (to do too much). Merl pushed himself with the drive and impatience that we all recognise but overdid it and either set himself back a long way or messed up his recovery by doing so. So his advice is always to be patient and make sensible progress rather than push, push.

Time isn’t the only healer (physiotherapy, occupational therapy, speech therapy and so on can be an important part of recovery from a stroke) but you can’t rush the time element.

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Thanku!

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Hi Debbie, My name is Howard. I’m 66 years old. In 2013 I had a bleed in my cerebellum caused by an AVM. After many days of tremendous headache, nausea and finally realizing I had lost my balance, I went to the hospital. After many tests I was told I had an AVM in my cerebellum. I had no idea what that meant and explained I had been suffering, what I thought were migraine headaches, for about a year. I had had all sorts of scans, MRIs MRAs and tests with no mention of an AVM.
Anyway it was decided I needed surgery but they wanted to wait a week for the bleed to clear. After a long surgery I woke to severe nausea and poor balance. With PT, exercise and patience my balance slowly came back. The nausea slowly got better. It took a couple of years to feel close to normal. Today, about 8 years out I’m about 95% with regard to balance with no nausea.
I had my surgery at Cedars-Sinai in Los Angeles by a wonderful surgeon, Dr. Schevenk.
If I can be of any help, please don’t hesitate to reach out.
Best of luck and good health to you.
Howard.

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Wow Howard! Thanku for that. Well I know by all the comments I’m on the right track. I just have to forgive myself for not being able to be a super mom now. It will be interesting to see how it goes and look back. Sounds like u had some major things going on. I slept thru my brain bleed and stroke. That was probably a good thing. It’s been 6 mths now since it happened but 4 weeks since my craineotomy.
Thanku for all your information. It all really helps me to feel somewhat normal. Whatever normal is!

ABSOLUTELY!!!
Through my former profession I’ve seen the good, the bad and the ugly…NO…I mean the really, REALLY UGLY and as selfish as it may sound I can look back and think ‘Well at least I ain’t THERE’ and I know I so easily could be in the exact same position as many of my former clients and I’m not. On my bad days I can easily fall into a hole of self pity, but I think ‘If ‘John’ can then what have I got to complain about?’ giving myself a metaphorical kick in the pants.

Although my role was as a teacher, teaching clients independent living skills, I often think they taught me much more about adaptation, resilience and perseverance than I ever taught them.

Merl from the Modsupport Team

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I know you are probably right. I watched many of my bus riders with huge admiration of what they went thru each day. U could not have paid them to miss a day! They love being involved and are so happy for the most part. Many look 20 or 30 yrs younger than they were. They usually have no stress . It was so fun having them.
I know what u mean tho. It’s easy to go down a black hole. It’s still pretty easy to get out tho too. I just have to think positive thoughts and remember the people that have been living harder lives before me.
It was fun reading your text. Those adult kids that were learning life skills were the ones that I transported. The awesome thing too is that I went to city bussing for 11 yrs and some of those adults would see me and do a happy dance 20 yrs later. They’d yell “Debbie” across a room. It’s amazing how they remember and even yrs later. It was really a joy to drive them around. They kept me laughing!

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I’ll tell you a funny story:

I haven’t worked since 2013 and a couple of years ago I went shopping at the local supermarket. So get my trolley, pull out the list the wife gave me thinking ‘OMG where do I start?’ and all of a sudden someone bearhugs me from behind. Now, I like my personal space and when I’m touched, without notice, I swing around often with an elbow ready to connect.

Well, the bear hug was from a young lady with an intellectual disability of about 4ft nothing. Now yelling my name. I hadn’t seen her for many years but she certainly saw me.
Luckily my elbow swung above her head
But my twisting, defensive motion had put her face in a highly inappropriate position and as I politely tried to extricate myself from her grasp and she pulls me back in, only reinforcing the position/motion, in the middle of the supermarket. I could hear all of the older ladies all out shopping on pension day muttering, ‘tsking’ and shaking their heads. There was absolutely nothing inappropriate about it. It was a young lady showing elated, pure, joy at meeting an old friend from many years ago and not wanting to let go. But the look on my face was one of pure white ‘SHOCK’, which probably didn’t help. I probably looked guilty as all hell if I’m honest. I can laugh about it now, but at the time…

The young lady was of ‘legal’ age, but she did not look legal at all. She looked (and acted) like a child, not that her attire helped. Nothing ‘adult’ size fitted, so she shopped in the ‘Kids’ section, reinforcing that ‘junior’ impression. Then there was the makeup, ‘kids’ wearing those clothes are usually too young to be wearing makeup like THAT, but she was a young adult and like her peers wanted to be like a young adult, makeup and all.

Just like everybody else, they just want to be accepted.

Merl from the Modsupport Team

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Oh that’s so funny. I can think of so many that I could seeing doing that. One in particular. I loved them all. Thanks for sharing such a funny and delightful story. Lol

I had my bleed and craniotomy four years ago. Unfortunately there were complications and I was in the hospital for two weeks.
I think you are doing great! At five weeks I was still using a walker, and it took me a year to realize I needed vestibular therapy. Good for you!!
I will say take it slow on the vestibular therapy. The first time I tried it they went to hard too fast and it didn’t help at all. Actually made me worse.
The second time, she said I should just get a little bit worse and let it get better in between. I started very slow on the gaze stabilization exercises; only 45 beats per second for one minute, with a minute rest in between. Slowly built up. I’m now doing 140 beats a minute! Sticking there, but will need to do it for life. Made a HUGE difference for me.
Hearing where you are at five weeks, I’m so impressed. Like I said I was still on a walker. But slow steady work and I am still improving at four years. Your goals are very attainable ( even though I remember feeling just like you, that things would never be better). I’m now able to walk six miles, without a cane or walking stick. I play golf three times a week, drive, go shopping on my own and am completely independent. My nausea is so much better, thanks to the vrt.
It was the longest, hardest thing I’ve ever done. Go slow and be easy on yourself. Taking breaks and resting are your friends right now.
Check out the website, vestibular.org. Lots of very helpful info on how to cope
Hang in there
Carol

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Oh you are so encouraging. Wow I love this. You have done so well. I’m very happy for u. I guess more to come with the vestibular stuff. She doesn’t think my eyes or ears were damaged. But my next appt is tomorrow. I just don’t want to throw up! Lol…Thanku for texting. Sure do appreciate it…

So now it’s time for my booster shot and I can’t sleep at night with worry. I’ve asked, everyone feels it’s safe. I so want it for sure. But after my second shot for covid , 2 weeks later, I had my brain bleed and stroke. I just wonder if at 66 yrs of age why my AVM suddenly bled. Could the covid shot have done it? I’m so afraid. Everyone is getting mad at me and trying to convince me. I don’t want to go thru this again. I don’t think I can. I talk to my Dr on the phone in 2 days. I hope he’s honest with me about not having anymore AVMs. surely lol the brain pictures he would see. I’m sure there are side effects of the shots. They just haven’t surfaced. I’ve read on “Google” about some, but I don’t really trust Google. All I know is I’m terrified of this shot. I just want to know I have no more AVMs. Even my granddaughter wants me to get it and assures me it’ll be ok… she’s my strength…

Hi Debbie!

Like one of our moderators (@DickD ) , I had a dAVF and not an AVM. However, a few years after being diagnosed and an attempted embolization, I had a venous infarct stroke in the cerebellum. My fistula was then repaired by a coil and they went through the groin. That was September 2020. I got my first vaccine the day after Christmas and the second three weeks later. I already had migraines, and they’ve been worse since the stroke. Both doses gave me terrible migraines! I was so nervous about getting the booster because of that. I finally got it two weeks before this past Christmas and it was ok. I did have some body aches and fatigue the first day. I got a migraine the next week, but that could’ve happened anyway. I was relieved it didn’t hammer me like it did before. Ask your doctor what they think. I’m a nurse, so it was available to us in September, but I didn’t feel it was the right time then. I thought about it a lot, and did it on the day it felt right to me. Listen to your heart and body. Take care and I wish you the best.

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Thank you. You know what I mean about being scared. I do want it I just don’t want a stroke again. Thanku for your response. I’m sure it will be ok…

So I’m in a position of fear. My doctor called to see how I’m doing. He was happy to hear all is well. He wants me to come in soon and do an angiogram to see if he got all of the AVM. I guess I’m disappointed because after the surgery he said he did get it all. I’m tired! What if he didn’t? I’m going to have to do this all over again… my goodness I’m worried and scared. I’m trying to just be calm until I know but it’s not working very well. Then I looked up angiogram to see how it’s done because apparently I was asleep for one or all that I had before. I also asked him about the booster for covid. I told him 2 weeks after the second shot I had my brain bleed and stroke. He told me to wait until I have the angiogram before I have the booster. So now I’m wondering do they cause strokes? I guess they probably do in some. So I’m going to try to stay home and have patience and pray for a calm heart…

So @Debbie it is my role in life to try to cheer people along and I’m not giving up on you yet.

A couple of thoughts (maybe three) from me, in case they help. Hoping one or two might help.

It’s normal to have a check up a while after surgeries. Certainly I had a re-scan at about 8 weeks post op, by which I mean that I had an angiogram. I don’t remember how long post embolisation or how long post surgery you are.

I think an angiogram is ok. I’m quite squeamish but I have got through three angiograms – two of them while conscious – and I’d be happy to go through another if it is appropriate. Honestly. Even the embolisation (and I think you’ve had three of those but may not have been conscious at that time) was a more gettable-throughable experience for me than I thought it would be. Being quite incapable with operations I expected to find it really rather challenging but again, if I needed a further embolisation, I’d be ok with that myself.

And I can faint if I cut myself. In fact it’s guaranteed that I’ll faint if I cut myself. This is how rubbish I am with these sort of things.

Honestly, you’ll be fine.

When you asked your doctor about strokes and the vaccine, did you say “stroke” or did you say “bleed” or some other word? Because one of the things I know about the vaccines is that there were some rare instances of a CVST stroke with one or two of the vaccines reported relatively early in their use. So a “stroke” is possible with the vaccine; but a CVST stroke is an ischaemic stroke, I think, – a blockage rather than a bleed. So while your doc couldn’t say “no” it may be you were talking at cross-purposes.

It’s about looking after you. Both what the doctor is proposing and what I’m trying to do.

Lots of love,

Richard

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The same thing happened to me. He said he got it all, and then I had to go in for an angiogram to make sure they got it all. I think they just want to be extra sure and careful. The last one I did they went in through the wrist. That was really easy to recover from. Good luck

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