its been about two months after my craniotomy and i’ve noticed that i get dizzy really easy and that for some reason i cant lay straight on my back. i can lay straight on my stomach fine but when im on my back i always have to have my head propped up with a pillow or something cause if i dont i get this weird sensation in my head it makes my world spin and is extremely uncomfortable and sometimes scary. this is especially annoying when ever i fall asleep on my back and during the night i guess i pull the pillow out from under me and it wakes me up instantly and i have to turn to my side to let the sensation pass. does anybody know what this is?

Hi Dylan. I did a search on the word dizziness for you…http://www.avmsurvivors.org/main/search/search?q=Dizziness
Welcome to the site!

Hi Dylan and welcome to the site. I’m no doctor and perhaps the best thing to do is to call your doctor and ask about the dizziness. I did have an AVM in my brain but it was located in my cerebellum but like you it was removed with surgery. To make a long story short and to address your question, dizziness from what I understand is common after brain surgery. Add to the fact that you had dizziness before as one of your symptoms. Try not to freak out too much about it (I know thats easier said then done) but do ask your doctor because like you’ll hear a thousand times…each AVM is unique and everyones journey is a bit different. Good luck and I hope this helps. Again, welcome. :slight_smile:

Hi Dylan. Like Suzy E I had a cerebellar Avm and have the constant dizziness. I’ve spent over two years after the craniotomy wondering why this slight dizzy feeling and episodes of the spins(vertigo) were happening. Turns out that in my case I have something called cerebellar vestibular disorder where your ears and eyes arent working right with your cerebellum to give you the right perspective on your surroundings, causing the off balanced or spinning feeling. You could always try to find out if you have inner ear issues but it seems pretty hard for the doctors to diagnose vertigo and it is pretty common post craniotomy. I know its easier said then done, but try not to stress it too much. There are some drugs to help out and you could also try antianxiety related treatments aswell. After everything us survivors have been through, we have alot of new norms to deal with.

Hi Dylan! Your question about dizziness made such an impression on me, I had to respond. I too get dizzy easily and have come to accept this as my new norm (as NBuddle called it). I also have double vision and some balance/coordination issues to deal with, but I have chosen to take them all as part of my surviving my AVM bleed and the craniotomy I had. Today I have an adjustable bed I sleep in and that helps alot to keep me from lying flat on my back (I keep my head raised). At the time that I had my surgery done - thirty years ago- I was treated as a special case and I felt lucky to have survived. I’m sure they know much more today, so I encourage you to ask your Doctor, if you haven’t already done so, to find out if there isn’t something that can be done. This is probably not that uncommon. Theresa

Hi Dylan. I dealt with dizziness for a few years after my operation. I would have dizzy spells every few days, at least, and I often experienced it while lying down, too. Now I very rarely get an occasional dizzy spell. It seems to be something that goes along with having a craniotomy. I talked to my doctor about it, though there didn’t seem to be much that could be done at the time (this was several years ago), but, I would definitely suggest talking with your doctor, as there might be some sort of treatment that could be done to help you through it. Please keep us posted, and good luck.

hey! me too. when i lay down i get dizzy and like a ting;y feeling in my tummy. it also happens if i move to fast or bend my head over to pull my hair up or pick something up.

Thanks Theresa for responding i too have balance and some coordination issues(slapped myself attempting to swat a fly). I know what you mean by feeling lucky to be alive my doctor told if i were born 20 years earlier there probably wouldn’t have been anything they could have done for me.I don’t want to accept this as my new normal though i used to be an outgoing, athletic kind of person, and now i can barley walk straight. anyways thanks again for responding.

yep that’s the exact feeling kind like on a roller coaster sort of. i feel like if i were to flip upside down i might die though i hope that never happens.

I’d strongly advise asking your doctor about antianxiety treatments just based on the feeling that you could die if you turned upside down. Those strange sensations cause alot of anxiety and its a constant fight everyday. It helped me alot, to talk to my neuropsychologist about how I was feeling and to know that it was normal and to some extent you can control the anxiety. I thought I was going nuts before I was diagnosed with anxiety because its so physical. its just more physical feelings on top of the neurological ones we already have. Even if your not into drugs I cant stress enough how much talking and getting some answers will help you.

I really found your comments etc. RE; Dizzies very interesting.
I presently am extremely dizzy and i hardly cannot accept it anymore. yep, that dizzy i am. I had AVM and was operated in 1999; was left with Vestibular problems. Looks as if i had the same as you or nearly???
I was dizzy before but never as much as since at least one months. I am soo dizzy that my Concentration etc., is also alot worst.
I am looking forward to go at my Audiologist in a couple of weeks, hoping to know what the problem can be.
Due that you seem to know a bit about all this; what would you suggest me to do or what to do etc., I need help; really not easy to live every second of my life dizzies, confusion, forget alo etc.,
Hoping to get your comments, Have a nice day

Hi Rita, so your dizziness is getting worse? for sure go get checked out the vestibular system is a complicated one, have you had any physical therapy?

Hi Dylan,
Thanks for your information;
I am waiting to see the results of a Xrays the Neurologists past me about one week ago;
Maybe, whenever he mademe the brain operation he went and touch a nerve or ?? This is quite true, i believe but: my problem is I am alot more dizzier then usual, alot more.
Plus, my neck is hurting soo much you would not believe how; Again, when those neurosurgeon operated and it is from the back of my head: Example; i had my AVM near the Cerebullum, also he passed near my right ear so he definitly did some damages there, i am positive of this: But, why am i worse then usual.
Oh, i know, with age a little normal i am getting to be sore to my bones here and there but...
Anyways, i cannot wait till my life will be a normal one; dicourage.

hi Friends,

Just wanted to keep you s updated on me. My neck, (bones) do have less pains but i got to know with Xrays that i do severe Arthrose in the neck (bones), yep severe there.

As for my dizziness, its always the same things; dizzies all the time. And, did not get further answers from Nerosurgeon Sirh..... How i wish he woulb be honest, frank and at least tell me exactly why i am like this since brain operation.. no to him i am correct ?????

Well, thank you for you courage friends and have a nice day; God bless you

Hi, I understaand that feeling of dizziness. My dizziness usually happens when I turn too fast or look up too long. My avm was in my cerebellum and affected my left side. Lucky for me when I did athletics I was right handed. I can throw a ball but not very good at catching it, unless, the ball is thrown directly at me(making me more of a target). Vball and bball require me to look up a lot, run and jump which makes my head feel like mush, even so I feel fortunate to be able to play. I am reminded how far I've come. From using a wheelchair, to a cane, to nothing at all with failures and sucesses along the way. For the challenges you face I wish you strength, patience and hope.