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AVM Survivors Network

Can’t sleep

There is so much that I could say - being 17 months out since my major Embolization in my brain (30 springs and a “ton” of super glue) I’m still dealing with a lot of symptoms in my messed up head. But I would be repeating what they already said - so I’ll save the space.

There is one thing I will add to the mix. I slept in my recliner in the living room for the first almost 5 months. Why? Because keeping my head elevated was crucial for keeping the headaches under control. I thought it was doing okay about 6 weeks out and tried to go to sleep in a normal bed. Within 10 minutes, my head hurt so bad that I thought I was going to puke.

Give it time, a whole lot of time and keep your doctors informed on any changes that you see.

TJ

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I needed my head up before my embolisation but I can tell you from personal experience that if you’ve got a bit too much blood pressure or possibly other pressure going on in your head, some elevation helps, though sleeping propped up as I did is not as good as it should be.

Pam, you WILL get through it. It is going to take rather longer than you’d like but you CAN do it!,

Lots of love,

Richard

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I for one, underestimated how hard this whole thing would be emotionally. I was sort of prepared for the physical part; you know, work hard and slowly build up my strength. The emotional stuff hit me pretty hard. I had flash backs and panic attacks; not to mention how overwhelmed I was emotionally. It took me six months to realize I needed some help and went to a counselor. Probably the best decision I made. I came to see that I had been through a very traumatic experience and that I was grieving my “old self”.
As everyone else has said this takes time, both physically and emotionally.
Hang in there, we know how you feel
Carol

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I never even had a handle on my “old self” much less trying to accept my new self. I’m having issues accepting that concept. The finding emotional support isn’t easy. I’ve called NY Presbyterian and they don’t know anyone in this area. I can’t even get pain meds because of this opioid epidemic. NY Presbyterian refers me to my PCP and my PCP sends me back to NY Presbyterian so I’m left with no support and no meds. Not a good system. I am very grateful for the support here.

The emotional side can be very difficult as accepting the new me has been difficult and I keep fighting for my old self and I probably will never stop trying… for the most part I’ve accepted the emotional side of it and have control over it but I do have my days from time to time.

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Are you taking tylenol meanwhile? It may be simple stuff but it does help. I understand it may not touch it but if it does, or takes the edge off it may be better than anything opioid based. Good luck!

We are here as much as you need, ok?

Richard

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I’m taking ibuprofen 600 mg a few times a day.
The clanging and hissing in’s other noises in my head are crazy. The other night I put my head on my husbands shoulder and he could hear the pops. Wtf

The back of my head popped for almost 2 years; thankfully it finally healed and stopped…very odd sensation.

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Pam,

If I’m honest, I don’t think you should do ibuprofen after an operation. It’s a blood thinner. Use tylenol instead unless you’ve discussed with with the doctor.

Very best wishes,

Richard

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Pam, After surgery I had severe pain & doc gave me pain (sugar pills) that did absolutely nothing for me. I tried them all & advil was the only one that worked. It’s been 10 years now, I have eventually stop advil now able to use bayer aspirin. None of it is good, we just have to learn to live with it. Try to grateful you are alive, meditation also helps.

It’s only been two weeks. Be patient. I had similar issues after my craniotomy: couldn’t walk for over a month, constantly dizzy, and bizarre ocean-like sounds which eventually stopped after 3-4 weeks. And sleep…huh! Didn’t get sleep like a normal person for a couple of months.

We had one of the most invasive and risky surgeries that can be performed. With it comes very annoying post surgery effects. Most of which are unique to each of us. But you WILL recover. But recovery is slow and long. And all of us here have endured it. You will too.

Be patient. You’ll be fine eventually, which will be sooner than you think. Reach out. We’re here to help.

Bill

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Ask your neurosurgeon to refer you to a pain management specialist.

Hi Pam, I’m sorry to hear this. I had gamma knife last year July so I don’t have any experience on a craniotomy. I would also agree that 2 weeks after surgery is still early days. I guess lots of rest is the best right now. Take it easy and speak with your consultant if you are worried. X

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What is a consultant? I’m a 6 hour drive from the neurosurgeon and have no real relationship with that team. They are not helpful by phone. I’m so grateful for this support online.

Hi Pam, here in the UK a consultant is a senior doctor. The main person who is in charge of your care and the main doctor who performed the surgical procedure. Sorry to hear that you don’t have a relationship with your team. Can your team refer you to someone else? They should be able to listen to you and help provide support.

When I had gamma knife last year I couldn’t get in contact with my team which was frustrating. Since I’m a diabetes nurse and work in the NHS myself my colleagues were able to help me as they knew my consultant. My point is they should be able to refer you to someone and help.

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Thanks for responding. The team knows nothing about the area I live. I’m a clinical social worker and am surprised they have no ability to find support for me in my area. I still don’t have a neurologist where I live. My brain isn’t working well enough for me to do this stuff.

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”
Carol

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