AVM Survivors Network

Can’t sleep

Hi, I’m sorry to hear that. Have you got any friends and family that can help and do the calling around? You can’t do this on your own. I know what it’s like when your brain is not 100%. It’s not the time to be taking on this stress. I hope you get the support you require. Take care. X

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My husband has been my rock but he’s a retired construction worker and not very patient with idiots. Some healthcare professionals are difficult to deal with.

I’ve seen it time and again on this sight. People feeling abandoned after their surgery. I certainly felt that way. I was not referred to a neurologist (still have not seen one, fifteen months after surgery). I was two hours from the hospital, and I also felt like I had no where to turn. In hindsight I wish I had asked my primary care doctor for a referral to a neurologist, even if it was just for the headaches(seems like a very reasonable request). I finally asked for one a few months ago and the only decent guy in town has a huge wait. My appointment isn’t until the middle of August.
I’m still dizzy and lightheaded. I did a bunch of research online and found the guy I wanted to go to. Really the medical community has not been there to help.
Seems to me your best options are:
1- family doc referral to a neurologist. You may be the only avm your doctor sees in their entire career. He/she will not likely know how to deal with your issues.
Or 2- does the neurosurgeon have a nurse practitioner? In my case she was very knowledgeable and reachable by phone. Even if she doesn’t know the people in your area she should be able to give you a way forward.
Good luck, it’s so isolating and frightening.
I remember my friends asking- “what did the doctor say about that”. And my response “what doctor”

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What doctor is right. I’ve already asked my PCP. It’s like looking into the darkness.

Yeah, it’s not you only just stubbed your toe, or something😷

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My husband keeps telling me to stop saying “major” brain surgery. He says brain surgery in itself is major.

I guess he has a point. It did make me laugh though.
When I complain about what I can’t do , my husband just looks at me and says “Brain Surgery”, like I am just expecting too much.
He recently said I should stop saying “brain damage”, but that’s just the reality of the situation.


Susan, @DickD, and everyone else who commented. Here’s what I’ve been told…

Ibuprofen (Motrin) will attack inflation better than Tylenol - but extended long term usage of Motrin can be damaging to kidneys and to something else (but my AVM brain can’t recall what the other thing is.). The same thing - but different problems. My Doc recommended over the counter Naproxen. I take it every 12 hours no matter what and supposedly it is doing better than Motrin would without the risk of organ damage…

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DickD, Thank you for this information, I’m anxious to try this out.

Hi Pam,

I didn’t sleep properly for about 4 weeks after my craniotomy, I was all over the place. I took Tylenol every 4-5 hours and would set an alarm to wake me during the night to take the next dose. My sleep was very disrupted.

I got a lot of the support I needed at my rehab center. This is where people actually seemed to understand what I was going through. Were you referred to rehab?

Also have you heard of a Physiatrist? I had never heard of them before my craniotomy. They are specialist doctors whose focus is to reduce or relieve pain and restore function lost due to illness or injury. Physiatrists also treat people who require long-term rehabilitation due to brain injury and stroke.They had one of these in my rehabilitation center, he was great, he was all about making sure my pain was under control. And he actually understood more than any other doctor what I was going through.
Hang in there! You will get stronger. And yes, your brain isn’t working well enough for you to do this stuff. Maybe you could ask one of your clinical social worker colleagues to do some digging around what kind of services may be available to help you in your area?

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I have no rehab support. Well really no support at all. You are my support right now. Thank you for your support. I’m going to look that up.

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TJ, all,

I understand that anti inflammatories can be beneficial for some circumstances but as an immediate follow on from a surgery, I am concerned that if a person with an AVM or recent surgery has a bit of a bleed, a blood thinners could lead to the damage maybe being more extensive.

I am sure I have read here of people with AVMs being advised to avoid NSAIDs (anti inflammatory medications) and very soon after major surgery would bring a similar concern to my mind. So… I would recommend having a good conversation with one’s PCP or neurosurgery specialist nurse or neurosurgeon about it.

I appreciate that @pamr7777 is struggling to get anything like the right support but I just wanted to flag up this concern each time.

Very best wishes all,