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AVM Survivors Network

Craniotomy recovery time

#1

Hi all! I haven’t been on this site for a while as I have been through hell during my recovery process. After my Craniotomy for a right frontal lobe AVM in November I’ve been recovering very slowly. My surgeon told me I would have little to zero pain after the surgery. Four months later chronic headaches still persist as well as major anxiety. Most days I wish I would not have had the surgery and had taken my chances with conservative management or Gamma Knife. From what I have heard, brain surgeons are really good at “fixing” things like AVMs but are terrible at treating the associated conditions, I.e. anxiety, depression, chronic headaches, etc. Luckily I have an amazing primary care provider that has been addressing my needs. I wish there was a support group for people that have had brain surgery in my area in Tucson, AZ. I did not anticipate that I would not feel recovered after almost 4 months. The research I have read implies that about 30% of patients have chronic headaches after craniotomy. I’m grateful that my surgeon considers me “cured” but obviously it is not in their nature to address to other consequences of the surgery.

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#2

Hey Kgrossenbach
I have been in a similar position to your own. Initially I was told the issue was hydrocephalus (water on the brain) so they inserted a shunt. I wasn’t deemed ‘cured’ but rather the issue had been managed and sure the fluid issue may have been managed but the cause of the fluid not draining in the first place was not treated, nor managed. Further scans established that I have an astrocytoma and a craniotomy was performed to deal with it, but it was growing too close to vital brain structures which I need. The growth was reduced in size, but not completely removed. Since then I’ve been on a massive rollercoaster of fluctuating symptoms, I can’t tell from one day to the next what symptoms I’ll have to manage nor what treatments/management tools will work.

I must agree with your statement ‘…From what I have heard, brain surgeons are really good at “fixing” things like AVMs but are terrible at treating the associated conditions…" The surgeons view is basically ‘We operated, we fixed’ but this is all far from fixed. The numerous medicos I have seen all have their own opinions on why my symptoms are ongoing and I’ve ended up having more diagnosis than I can count on my fingers (and toes). For me the closest I’ve come to something resembling an answer was from the ophthalmologist "well, you’ve had brain surgery. What do you expect?’ Well I can tell you I wasn’t expecting ‘This’.

I will say that when it comes to neurosurgery 4 months is still fairly recent in regard to your recovery. For me it has now been 6years since my last procedure and although for me somethings have improved, somethings certainly have not and I’m now being told they probably never will, but even at the 6 month mark I was still making some small improvements. As for the headaches (and other symptoms), well, they are a daily battle still.
Hope it helps

Merl from the Moderator Support Team

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#3

I can relate to your concerns and know it’s hard and only time will heal your issues I guess. Keep up the good fight and always remember you are now AVM free which is a huge thing to have… God bless!

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#4

Hi Kg, I’m in Phoenix if you ever need some company.
As far as “fixing things”, you’re probably right. Surgeons are good at doing what they’re trained to do. It would be nice (?) if we were all the same as the examples in their training, but we’re not. We’re all different in infinite ways, especially if you’re talking about stuff like anxiety and depression.
Sometimes language can’t even convey the subjective meaning. For example is “anxiety” attached to heart-rate? I have no idea.
I had 2 craniotomys and the scar tissue has not just caused seizures, there is also emotional scars and mental scars.
I wish I could tell you not to worry and things will get better little by little. (probably true) For me habit forming is critical, both good and bad. I journal daily and work out at the gym regularly. I get up at the same time.
Having habits doesn’t get rid of anxiety/depression for me, but it definitely reduces it. You can also try to feel grateful for whatever you have to be thankful for. There are probably more than a few things you treasure. Actually feel the gratitude rather than just make a mental note.
Though I understand your concerns about surgeons, that energy and time is better spent working on yourself. I have struggled with feeling powerless for over 45 years and continue to do so. Sometimes it consumes me and I get angry or feel despair. Does anyone else here struggle with feeling powerless?
Again, if you want, we can talk about getting together somewhere in Arizona. Greg

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#5

Thank you all for your responses. I’ve finally returned to work, which ironically is helping a lot. It’s given me the opportunity to focus (I’m a L&D nurse) on others rather than stew in pain at home. I think it’s been good for me to start using my brain for complex thinking again. I’m not 100%, but I am hopeful that I am becoming a more functional member of society.

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#6

Hey Kgrossenbach,

"I’ve finally returned to work, which ironically is helping a lot. 
It’s given me the opportunity to focus (I’m a L&D nurse) on others 
rather than stew in pain at home."

Well, that is great news and yes, it can help. BUT…DO NOT over do it. If you need time out, take it. I say this because I didn’t. I took the attitude that I needed to build stamina and push my limits. This was the worst thing I could have done, I didn’t listen to my own body, it was telling me, but my mind (my ego) said ‘push’. I wanted to be ‘…a more functional member of society…’ but I pushed too hard, too soon and did myself more harm than good. Ahhh, DON’T DO THAT. If you need time take it, you will thank your lucky stars if you do.

Merl from the Moderator Support Team

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