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AVM Survivors Network

Headaches post surgery

Hello All,

I had an AVM, in 2015 I had Gamma Knife laser surgery. In January 2019 the cluster had expanded. I was in and out of the hospital 5 times. The neurosurgeon said it was time my wife and I talked about having surgery to remove the AVM from my brain. The DR. told us; I could lose my speech, mobility, and/or memory. I had the surgery in Mid-June 2019, the only effect was a little loss of short-term memory.

Now I started having massive headaches again. The neurologist I see has been on vacation for the last 2 weeks, and no one else from the office has called me either. Has anybody else had headaches after having a engorged AVM cluster removed by brain surgery?

Hi,

I’m sorry to say that I can not answer your question directly…as I am still waiting to have surgery myself, so I have it all yet to come.

I just want to say I wish you the best of luck and I hope your headaches stop as soon as possible.

Only advice I can offer is, get in touch with your doctor as soon as possible. The problem might be broader then you think and it’s better to be safe then sorry.

All the best and congratulations for having gone through the surgery and come out the other side

Thanks Dave and good luck.

Hello mate.

I’m sorry to hear about your situation - everyone on this site is here in the same boat.

I can say that I had not so much headahces but experience more brain fog, which ranges from mild to very intnese, depending on if I have had lack of sleep, too much excercise or am going through stress.
I experienced full on headaches when I over exerted myself physically (a few times I shouldn’t have but just got carried away working out). All I can say is that you have had the surgery in June 2019 so you’re still in very early early days. I had my third surgery in February and am still experiencing symptoms.
As everyone on the site has said, recovery takes such a long time, longer than you expect so all I can say is take it day by day and talk to your doctor when you can.

Take care and all the best my friend.

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Hello @chbcubed,

really sorry to hear about your situation. I had surgery on Nov 28th, 2018, almost a year ago. until now I still had headaches, dizziness, disoriented, slow motion movement. Headaches occured especially when I was tired, or did not have enough rest. I already check up with my doctor, and they encourage me to have enough rest, no stress, and try to control emotion, coz when I had headaches, my temperamen become out of control, and it gave pressure to my head :sob: . well that’s about my condition , hope it can give more info, cos different body different condition.
Hope that you can communicate soon with your doctors.

Hugs fom here

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Hi @chbcubed nice to virtually meet you! I’m happy to hear your surgery was successful and you made it out with little side effects. I had my AVM removed Aug 2018 and I went through a plethora of different things throughout the first year of recovery. A lot of what’s been said already but I started having migraines when I would over exert myself or get stressed out. If I didn’t eat enough or pushed myself too hard at the gym too soon my headache would come in like clockwork. I would say give yourself more time, they will get better. My neurologist gave me magnesium oxide to take if a migraine was coming on. Thankfully since hitting my year mark I haven’t had any. To be safe though if your headaches are that bad and your concerned definitely go see your doctor. Part of recovery from AVM surgery I think is dealing with the anxiety. I ended up visiting the ER twice my first year from weird symptoms I thought I had an aneurysm or something went wrong. Thankfully all was okay. Happy healing and I hope this helped!

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Hey chbcubed,
I must agree with all of the posts already made here as each has some very valid points. I have had the ‘joy’ of dealing with multiple (6) neurosurgeries and no 2 have had the same recoveries. Some neuros make out that it’s the same for everybody… …It ain’t. No two brains are wired exactly the same, no two surgeries are exactly the same. So it’s logical that no two recoveries are going to be exactly the same.
Some medicos have the idea that if they minimise the impact, that this will minimise the stress and therefore minimise the symptoms. This is false. The stress impact is real but it is not the only contributing factor.

Initially I was told my symptoms were psychological in nature ie I was thinking about it all too much. So I ignored symptoms and just pushed on through. This was a bad idea. My symptoms increased and by the end of the day I was in agony. I was then told I needed to learn to pace myself. So I kept a diary of activity/diet/pain/medications etc. But there didn’t seem to be any pattern, if there was a pattern I could have managed around it all better. Some days I could push myself and be OK, other days I could rest up and be in agony with a pounding head, visual distortions and all the other ‘odd’ symptoms. Some dr’s were of the belief it was medication related or ‘medication rebound headaches’. I was trialled on all sorts of meds but none of them seemed to work long term. My symptoms fluctuate massively, so trying to find that ‘Happy medium’ has been near on impossible.

Some neuros are of the opinion ‘We operated, we fixed’ and although they may have dealt with the initial cause/concern, the whole processes has unleashed another whole range of symptoms and the flow on effects of which have been life changing. It was been 6 yrs since my last major neurosurgery and for me there hasn’t been a day where I have been symptom free.

I MUST agree with others here who have said you are still early on in your recovery. 6 months is like the blink of an eye when it comes to neurosurgical recovery. I often explain it a bit like this “Our brains are our body’s computer system. If you opened up your computer and threw in a handful of aluminium foil flakes, what would happen? You’d have short circuits all over and that’s if the system ever worked properly again”, and that is basically what the neuros have done. They’ve opened your skull and disturbed the fine circuitry within, they have altered the blood flow and the electrical connections within. This can take time for the body to adjust to.

Over time I have learnt how best to manage for me, there will be lot of people with a lot of opinions on how best to manage with every thing from “Just take a Tylenol…” to “Have you seen a doctor…” and although many of them come with the best of intentions, the reality is that you have to manage all of this the best for YOU, not them. We all wish/pray/beg that the medicos had the answers, I’m sorry to say this but, often they don’t. That idea of ‘We operated we fixed’ or 'Well, after 6months the body has fully healed, so everything should be fine…" often this is not the case and we have to manage the best way we can for ourselves.
We know this because we live it too.

Merl from the Moderator Support Team