Hello and welcome to Flawed yet Functional! This space is both for encouragement and support in taking control of your autoimmune disease/symptoms and a bit of a diary of my health journey. One part of that journey is the removal of an arteriovenous malformation (AVM) from my right frontal lobe (aka brain surgery). The anniversary of my surgery is December 2 & 3 (it was a two-day procedure), and in light of my anniversary this week, I’d like to share what to expect after AVM brain surgery with you all. Although perhaps not applicable to all of you, perhaps you will know someone someday who could use this information!
I’m not a medical professional giving out medical advice. I am an AVM survivor sharing my experience and suggestions based on my experience and those of my friends. I know several AVM survivors personally, and I will draw upon their experiences as well as my own for my answers here.
AVM Brain Surgery Recovery Expectations
It might be best to have zero expectations going into surgery. Especially if your AVM is in the brain, the outcomes are largely unknown. Surgery on the brain is very delicate and can cause much harm or none at all.
If I could go back to pre-surgery me, I would remind her to over-explain anything she’s feeling. It is likely that words and thoughts won’t come together quite right, so don’t get frustrated but keep trying to explain your concern with caregivers.
For example, I “lost” my legs one night in the hospital. For some reason, I thought my husband sleeping with his head on my bedside had pushed the bottom half of my bed away from me and my legs with it. I was naturally distraught. Where were my legs? However, I couldn’t put my thoughts together coherently. I called the nurse and waved at where I thought my legs should be and said: “doesn’t this look not right to you?” That poor nurse and Dan! It made perfect sense to me. My legs clearly weren’t where they were supposed to be! However, I could not get the words out to explain all my thoughts and fears to them.
I would tell my past self to expect to work hard to rehabilitate and keep her chin up. While I did work hard (it’s what I do naturally), I didn’t stand up for myself when I could have explained to my therapists that a certain strategy wouldn’t work or when I thought their expectations were unreasonable.
For example, one therapist really liked to play pop culture trivia games to speed up my brain processing. I don’t know and never knew pop culture. I would have been as slow pre-surgery as I was post-surgery, but it took having Dan in an appointment to tell them that I’ll never get those questions right, quickly or slowly. Pop culture is not my strong suit!
Can AVM Cause Personality Changes?
Any surgery that cuts off the flow of oxygen and blood to the brain can cause personality changes. From tumors to brain injury, trauma to the brain can result in a variety of changes, AVM surgery is no different.
Should you or your loved one experience some personality changes, seek help to accept and optimize the new normal.
For me personally, I think I am largely the same, personality-wise, as I was pre-surgery. My mom says she can see a difference in me, but she’s my mom. The things she will notice will likely not be noticed by the general public.
Can AVM Surgery Cause Physical Changes?
Yes. Absolutely, but there is no standard as to what physical changes to expect. It largely depends on the location of the AVM, hemorrhaging, and complications during surgery, if any.
When I woke up from surgery, I was paralyzed on the left side of my body. Paralyzation is an odd thing, it was like a perfectly straight line was drawn down the middle of my body. The right side functioned normally, the left didn’t. My face was slouched on my left side but not my right. All expression and function remained on the right side. If my situation wasn’t so serious, this may have been comical!
My paralysis turned out to be temporary. I don’t know the exact cause of healing, but these are some theories my doctor threw out:
- The left side of the brain took over control of the physical movement of my left side which would normally be controlled by the right side of my brain. This is common in areas of brain damage. If a function is available on both sides of the brain, the undamaged side can take over for the damaged side. The ability of the brain to adapt is called brain plasticity.
- Paralysis was only due to inflammation in the brain as a result of the surgery. Therefore, when the swelling goes down, the function returned.
- The third solution is it could be a combination of both. I lean towards this one or only #1 because the motor movement on my left side is just not right. It is particularly noticeable in my left hand. The dexterity and flexibility of my fingers are noticeably different from my right hand.
I have friends with various physical handicaps from seizures to handicapped appendages. The outcome depends on where in the brain the AVM is located. What function is it pushing up against? What area is it starving of blood? Is it operable? All of these things determine the possible physical ramifications.
Can AVM Surgery Cause Mental Capacity Changes?
With a heavy heart, yes it can. It is, after all, brain surgery. Delicate and risky don’t begin to describe the potential for things to go wrong.
There was a girl admitted days after me in the same hospital with the same condition; however, her condition was much more critical. She was immediately rushed to surgery, and she never recovered. I don’t know the medical description for her current state, but she is permanently on a respirator and not able to communicate.
Have you heard of survivor guilt? I had nothing to do with her condition, and yet I feel terribly guilty to have come out of my AVM surgery barely scarred. Why does God allow these trials in our lives? I don’t know, but I know that He is good. He loves me, and He is working all things (good, bad, and terrible) out for His good and His glory.
What to Expect After AVM Removal
Obviously, I am not a medical professional, and these expectations below are drawing only from my experience after having my AVM removed. I’m sure my journey is not unique, so let me set the stage for what to expect after AVM brain surgery based on my story.
First and foremost, you will likely need some sort of rehab to restore motor and speech functioning. Even if you can speak just fine, a speech therapist will likely be assigned to make sure your mental processing is up to speed.
The amount of physical rehabilitation you will need is an unknown to be determined only after surgery. I had inpatient rehab for 2 weeks after surgery then outpatient rehab for 3 months. After that time period, I was still disappointed with the dexterity in my left hand. However, I knew what to do about it. I had the tools to continue to improve my physical condition, and I did so for the next few years at home.
Now, 10 years post-surgery, I do not work on isolated exercises to improve my left hand, but I always make sure I’m using it. Just because something is easier with my right-hand doesn’t mean I will do it to compensate. The affected side needs to be continually challenged.
Graduated to Return to Work
Your medical team will likely encourage a graduated return to work once you have passed rehabilitation. Energy and stamina are usually lower after time in the hospital and/or rehab facility. If your work allows it, work out a graduated work schedule when you are cleared to join the workforce again.
My return to work schedule looked something like this:
- 2 hour days for one week
- 4 hour days for one week
- 6 hour days for one week
- Full days
Being alert and attentive, let alone the physical movement required from your job is enough to exhaust anyone who has been primarily lying in bed. Two-hour workdays might seem like a joke, but you will be more tired than you think. Take your time returning to work!
If seizures were associated with the discovery of your AVM, then your license will be revoked for 6 months. My seizures were isolated and did not result in a loss of consciousness, so my license was not officially evoked.
However, I was on heavy anti-seizure medication for a couple of months after the surgery as a precaution. So I followed my neurologist’s advice and did not drive until I was taken off of the anti-seizure medication.
Your story will likely be different than mine. Be prepared for a potential loss in driving privileges.
Fear in Unusual Places
The mind can play dirty games with you and create fears you didn’t have before surgery. None of my fears were debilitating, but I found things like showering by myself and driving again to be anxiety-inducing. The fear subsided fairly quickly, but I was shocked that I had them. I guess after being so heavily monitored and assisted for so long, life on my own was a little daunting.
Ask for help. Share your fears with your loved ones. They need direction in how to be a help and knowing your fears would give them a place to start.
An AVM in the brain is an unpredictable thing. What should you expect after AVM brain surgery? Anything. Be prepared to accept your condition and work hard to improve it as much as you can. I hope my experience is helpful as you try to navigate the options for your AVM. Read my whole AVM story here, and feel free to contact me or comment below for support!