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AVM Survivors Network

Stumbling a lot

A number of years ago they found an AVM in my brain and I had no symptoms. Lately I have had poor balance and stumble a lot to the point where I am uneasy in the shower for fear of falling when I stumble.
The only other symptoms I have are short but very painful headaches and bad tinnitus.
Does this sound like any symptoms you have had?
I am talking to my family doctor tomorrow

Sean:

I had Gamma Knife twice for the AVM in my Cerebellum. It’s been 5+ years and I’m still off-balance at times, and I have vertigo as well. I consider myself lucky in that it could have been much worse. Once your doctors chart a course of action for you, I pray that you see improvements all around. In the mean time, try a little P&P
(Prayer & Patience). It makes everything better in my opinion. Wishing you all the best on your AVM journey. Keep us posted.

Sharon D…

Hey Sean. Sorry for the trouble you’re having. One item of note, and my neuroopthamologist mentioned this, sometimes the balance issues come from a change or lack of visual field. Not sure of your specific case, but if you have an AVM, that can affect your vision. Blessings as you continue!

Sean,

Yes. My AVM was in my dura mater (one of the meningeal layers) but was pumping blood into my transverse sinus and past my ears. One of my signs was dizziness, to the extent that I used to properly hold the handrail going downstairs. It could have been affecting my ears that way or it could have been pumping towards my cerebellum through another of the sinuses (straight sinus?) Anyway, I had it embolised and although it took a long time to feel “normal”, I’ve been fine now for 2 years.

So, go & see the doc and hopefully they can sort you out a bit.

Very best wishes,

Richard

3 (it always makes me feel like i’m working in a James Bond movie - if i can call you 003 and when I sign off, I’ll sign off “T.”

Balance problems - Most of the time, I describe mine as “cruise ship wobblies.” Ever been on a cruise ship in 4 to 6 ft. swells? Where you are sitting at a table and the horizon out the window keeps going up and down and up and down. And sometimes you can feel it, sometimes it catches you by surprise?

Yeah, the majority of the time, that’s what my balance problems are like. I have only actually fallen 3 times and it was fortunately not anything major. Well, I guess if you count falling out of bed the morning before my social security disability hearing. I asked my attorney when I got there if we should bring it up. She asked me some questions and then she will make a call based on how she thinks things are going on whether we should bring up the fact that the bruise around the top of my eye was because I faceplanted into my alarm clock.

Stumbling in the shower - for probably the first 6 months, that was a really big problem - to the point where i wouldn’t lock the door to the bathroom because I didn’t want to risk falling and no one being able to get in and help. Now I have to keep one hand or arm on the wall if I’m leaning way back to get the soap out of my lengthy (1/4 of an inch is lengthy isn’t it?) hair or my eyes closed.

My wife came home from work one day and i was working (snail’s pace) on something in the garage and I was on the third step of a ladder. That did not make her happy and it was not probably my smartest move.

I find that if my headaches are worse or I’m more tired - phsycial, emotionally or lack of sleep tired, then balance gets harder - plus if it is noisy.

I am pretty sure I have constant black and blue marks (bruises) on both arms between the shoulder and the elbow because that is what gets bumped into the wall if I’m walking along and then I have to go through a door that is a turn, I will quite often stumble and hit the door frame.

Would you count stubbing/spraining/probably breaking a toe as balance? Rare is the time when i don’t have a significant black and blue on at least one or two toes and a number of times, I have had the same symptoms as when I broke a toe and i know I broke it.

I know it’s not what you meant, but i also stumble over words a lot. For someone who used to talk for a living, it’s frankly very disappointing how often I have to say, “no wait, that’s not what I meant…” or "what do you call ___________ when they ________.

I have not had a bleed, but this is the fourth major surgery/embolization i have had done in the last 42 years and it was substantially more involved and the side effects, well, let’s just say you learn to live with them rather than get over them.

You are not alone,

T

:slightly_smiling_face:

Thank you all. I spoke to my doctor and he wanted to rule out allergy related effect: my ears and sinuses have been clogged for months. That is normal for me. For the last 50 years I have had that every spring and summer but he is starting there.
I really get the reference to feeling like you are aboard a cruise ship with rough waves. I have been through that several times including on my honeymoon cruise where we were on the edge of a hurricane.
I have a follow up in a few weeks and I will talk to my doctor again about my symptoms and whether the drugs for my sinuses helped.

1 Like

Sean,

Sorry to hear about this. I was wondering whether you or your doctors are considering surgery or any other treatment anytime soon? Your symptoms definitely resonate with a lot of us here and perhaps this could be due to the location of the AVM? - given you are experiencing balance issues it could be the cerebellum or frontal lobe? You must discuss this with the doctor if not known already and I hope they are able to go through the best course of treatment (of course once COVID gets better).

Regarding the painful headaches I couldn’t relate more! They are really frustrating and underrated- the pain is a lot and I really understand! Ah imagine a world with no headaches/ migraines…But please a make sure your doctor prescribes you a good medication to help you cope with this pain because it can be difficult to bear especially on a daily basis.

I hope you get some more clarity regarding this situation and alongside clarity - ease! You are NOT alone!

Lots of best wishes,
Roshan