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AVM Survivors Network

My daughter is a week post op and in so much pain


#1

She had an avm removed a week ago and until today was still lifeless basically and on the drip which was administering Fentanyl and katemine. Her pain levels are getting worse each day. She cries most days in pain

How long was everyone’s recovery as her family we feel she should be feeling much better 6 days post op


#2

It is with the greatest respect when I say this but your question can have so many answers, it’s a bit like asking “how long is a piece of string?” Where is your daughters AVM located? The location can have a massive effect on recovery time. If it is within the brain there are there are so many variables. Having an expectation that 6 days post op she would be feeling better is VERY optimistic. Her body is still recovering from the actual surgery, let alone giving her body time to adjust. I do not have an AVM but I have had the ‘joy’ of enduring 6 neurosurgeries and the only common factor of them all has been excruciating pain. The recovery period for each has been vastly different both in length and pain level, in fact, my most recent was in 2013 and I am still battling to manage today. My intent was to return to work, as I had done after the other operations, well, I’ve now been told that is highly unlikely to ever happen, which has been totally devastating.
I am by no means saying that our situations are at all similar, not at all, but I have found the best way to view any surgery is from a worst case scenario, at least that way anything less is a bonus. If the medicos have her on Fentanyl and Ketamine then I would suggest this is going to be a long slow recovery. Those are two drugs that are not used without a SERIOUS need for pain management, in fact ketamine is a drug used by vets as a horse tranquilizer. It is not ever administered without good reason.

Merl from Moderator Support


#3

I remember being the same way. The pain won’t always be that bad but 7 months post op I still experience pain trying to gain back what I lost after my last rupture by being pushed in therapy. Baclofen helped ALOT. Unfortunately I am at the maximum dose so I don’t know how to go from there. Chin up! Although we all may struggle differently we struggle together. It won’t always be like this. Your daughter will soon realize how incredibly strong she is after this nightmare is bareable. She made it out alive (I hated hearing that phrase but it’s true)


#4

Thank you so much for that and I am very sorry to hear about your own journey. I thought once removed that was it. Thank you that eases my fears a lot


#5

Yes. Thank you. Her heads been fine. It’s been her neck and back mainly and today her eyes are sore. But have seen an improvement since they’ve taken her off those strong pain meds


#6

Yeah the first few weeks are tough but afterwards she won’t even need or ask for pain medication. I still have mine for a rainy day (literally rainy days is when everything seems to hurt) but I never really take them I honestly prefer my muscle relaxers but recently we’ve discovered its more of a over active nerve problem (which I will mention to any of my drs)


#7

Suzzanae

I’m really sorry to hear about your daughter. It is never good to be in pain. I hope she gets better – especially gets rid of the pain – soon.

Am I right to think she has had a craniotomy? Or has she had an embolization? I tend to think of a craniotomy as a major assault on the brain, so what Merl and Teiry say is right… a week post op CAN be ok but it CAN be very very early.

Did she have a bleed before the AVM was discovered? Again, the damage done by an actual bleed can be a big thing. Some of her pain could be from the effects of that, I suppose.

As the ladies say, this is big stuff and it is very early.

Tell us a bit more about what she has had and we may be able to offer more specific support / others who have had similar experience may chip in. Ask anything you like. We are keen to be here for you.

Depending on the scale of the op and any damage done by a bleed, recovery can take a very long time. Too long to be fair sometimes.

Very best wishes,

Richard


#8

Thanks for that. She was doing better yesterday but during the night they were going to put her back on the button

Her back is the mIn problem. Her heads fine. Eyes were very sore yesterday and double vision and she said her left hand felt funny

Her AVM was on the right side. They said it was small but very deep and tricky to get to

The removal went well now it’s just all this pain


#9

Thank you Richard

She had a really bad headache 3 weeks ago and a CT scan showed a bleed. She’s 23. She had two more CT scans and two MRIs whilst in the first week and then she had a camera up through the groom which she was awake for. That showed it was small but very deep and in tricky place.

That had told us thee options for removal. Surgery. Up through the groin again or radiation. Because of how deep it was they couldn’t go up through the groin.

She chose the surgery. They also did the camera procedure again while she was still under.

They say it all went well. But she isn’t getting any better because she’s still in so much pain.

They are taking the staples out today and then she can finally wash her hair. Hopefully she feels a little better then

It’s so hard when your baby’s calling at 3am crying in pain. She’ll get through this okay!


#10

We all understand and that’s what we’re here for, each other, I know for me the first two weeks were rough, then slowly started getting a little better as time went by, it takes time you all have been through a lot, take it easy, give her time to heal and talk with your doctors, we are all pulling for you, wish you the best result possible, take care,


#11

Suzzannae,

Wow! Ok, so she’s gone through the lot! I’m no doctor, and the idea of this forum is not that we can give medical advice, just be there for each other and share our own experiences but it sounds to me like she’s gone through a lot. The main thing I hope is they can find something to help with her pain that works. I guess everyone is different, so what works for one doesn’t always work for another.

I’d also guess that some of her pain feels like it is coming from one place but maybe what the doctors have told me is “referred” pain. This is where the nerves are damaged (or maybe in your daughter’s case her brain is damaged) and the pain is emanating from that damage rather than really in her back.

The main thing for me would be to try to get her pain sorted. It can’t be nice.

Being a parent of an AVMer is among the hardest things. We obviously have a number of parents of, so have a read through other parents stories if that helps. Ask a few questions. I’ll move your post to the Parent & Carer category in case that helps, too.

This is going to be a long journey.

Lots of love,

Richard


#12

Hi Suzzanae,

I had an embolisation (the “up through the groin and glue” procedure) two months ago so I can’t give experience on Craniotomy which wasnt an option for me.

However I am also 23 years old so if your daughter wanted a fellow AVMer to chat to who’s the same age, Id happily be there!

I havent had a bleed but I did have gradual brain damage over the past few years due to my AVM. Also during my embolisation I suffered a small stroke whiched caused more brain damage. I had a less invasive procedure than your daughter but 2 months on I am still adjusting and recovering - so it goes to show brains take time to recover. The length of time truely varies alot between people.

I really do hope pain releif for your daughter is managed soon and hopefully it subsides soon too. I have to say - my first shower at the hospital was amazing. A proper wash after days of being bed bound and wet wipes is such a releif.

If your daughter doesnt have these already - fully recommend an eye mask and ear plugs. Helped me rest better since the hospital is such a noisy busy place.

Lots of love,

Corrine


#13

Thank you. I think time, like you said, is the answer


#14

Thank you Richard. It’s the pain that’s her enemy now. She’s just gone for another CT scan as she’s lost vision. They sent her to the eye and ear hospital this morning for tests

They think the front of her brain is swelling and stopping the blood flow to her eyes. Hopefully more answers soon. They were sending her home yesterday until the eyes got worse


#15

I’m sure there’ll be some brain swelling going on. That will cause some issues but I would hope that will be temporary.

I hope she gets to be more comfortable as soon as possible.

Very best wishes,

Richard


#16

Yes it’s a hard question to answer as everyone’s AVM are different and in different places . I know I was in a lot of pain about 3-4 days of surgery around my eyes. But it was a successful surgery and not too complex compared to some . So every surgery has its own story I’d say. So sorry to hear your daughter is still in pain. And hope she feels much better soon xx and has a quick recovery . But I do remember feeling very fatigued for a month or 2 . Does take a while to feel so
Much better


#17

Still thinking and praying for your entire family’s wellness, hope you are doing OK and hanging in there, How is she doing, any progress or relief ??


#18

How’s your daughter? I hope that her pain has subsided. Please keep us informed.
Thoughts and prayers to y’all.
Lisa


#19

Thank you and glad to hear yours went so well


#20

We had an appointment at the eye and ear hospital last week. She still had double vision s d wears a patch over one eye. That helps. Headaches and back pain around the shoulder blades are still quite bad. She is on two pandafol and an endone every 4 hours and Targin Not sure of correct spelling twice a day

She has another appointment in two weeks so hopefully it is just still swelling which they keep saying it is