Hello,
So I’ve met with the neurosurgeon and am moving forward with surgery. Honestly I do not know how to feel about having a craniotomy. It’s somewhat shocking honestly. Not sure what to expect during surgery and after during the recovery. The neurosurgeon says I will be down for a minimum of three months. Can anyone share how surgery went for them, how the healing process was and and anything that is pertinent?thank you in advance!
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I can’t comment on the craniotomy aspect as I had gamma knife, but I can comment on what I think was the most important part of my decision. Firstly I had treatment options, and did not want to experience another bleed. My options were craniotomy or gamma knife. My AVM was located on the inside portion of my left temporal, so difficult to access. My neurosurgeon felt it was likely I would have several deficits, largely dealing with vision and potentially speech. The opinion was that gamma knife was the better manner to deal with due to location, although I did have the period of essentially two years where re-bleed was possible.
This is a long way to say, I was comfortable with my decision based on all that I knew, I would not know if it was the “right” decision until gamma knife was successful and no re-bleed, but that was two years later. My advice is to be comfortable with your neurosurgeon, and be at peace wth your decision. I’m assuming you are there based on your decision to move ahead, do you have date?
John
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Hey Butterfly
And nor did I and I think shocking is about the only way to put it. Upon being told I’d need the craniotomy, I left the hospital, went to the beach, walked out on the pier, got to the end and threw up. The reality of it all hit me like a ton of bricks.
From there I tried to process it all (somewhat anyway). I can be a bit of a control freak, especially with self, but here I had to hand all of that control over to the medicos. Once I came to some sort of acceptance of that I could move forward.
You state you’re not sure what to expect during surgery, don’t worry too much about that. If you have ‘during’ questions, ask your surgeon. You need to be concerned with dealing with the ‘after’. The ‘during’ bit, that’s outside of your control. The surgeon and theatre staff do all of the ‘during’. The recovery can be a bit of a rollercoaster. I’ve required a few neurosurgeries and the recoveries have all been different, so to be saying ‘X’ will happen or ‘Y’ will happen can be very difficult. I am yet to hear of 2 patients having exactly the same journey. Some people recover unaffected, but then others can have ongoing issues. Me, I have good days, bad days and OMG days, I have to deal with whatever the day throws at me. On a good day, no problem. On an OMG day, I need to hibernate.
The healing processes of the craniotomy wound itself, I found weren’t too bad. Because the nerves of the scalp get cut, the healing of these nerves can cause some significant discomfort, as they fire pain messages trying to relocate each other. But it is a scalp pain and not an internal pain. Those pains do eventually settle. The wound maybe itchy beyond measure, but they say an itchy wound is a healing sign. Try not to scratch it too much. Some people suggest lotions and salves, but please ask your surgeon about this as the very last thing you want is to compromise the wound healing.
It’s the healing on the inside that can take quite some time and patience will be key.
In saying all of that here’s my advice:
- Setup your home environment. Have a dark, quiet space where you can hibernate, with lots of pillows. I found my positioning was paramount, pillows helped.
- Stock your pantry/refrigerator, lots of soft foods. No T-Bone steaks for a while.
- If you are having ‘screen time’ ie Laptops/tablets make sure you have all of the cables/leads available
- Medications - Have them readily available and use them when they are needed.
- Rest - You may find you tire much more easily and not just tiredness but absolute exhaustion, way beyond simple tiredness. Rest when you need it (and you will need it).
And finally, friends and family. This can be a little difficult. Many will want to help. I was drowned in sympathy, with lots of ‘Ohh, you poor thing…’ type comments, but sympathy gets really old, really quick. What I needed was empathy and understanding. For me, I had a sensory overload with too many people and get this headache sent from the gates of hell, super intense. I needed peace, not company. But I still needed their assistance in some regards, so I didn’t want to be pushing people away too much either. I tried to setup a bit of a support system ‘on-call’, so if I needed, I could call on them. It also helped them ‘to be of some assistance’.
Hope it helps.
Merl from the Modsupport Team
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I have some tentative dates for either July 25 or for sometime in august. Since I have to have an embolization the day before surgery, both the embolization team and the neurosurgeons have to be available, for back to back dates. I will find out this week.
Yes, based on the location, the size, it’s 3-4cm and the fact that’s it’s not too deep, after talking with neurosurgeon and exploring all treatments, survey seems to be the best treatment. It will ensure the elimination of a bleed.
I feel comfortable with the decision but I do feel anxious of the not knowing what to expect during and after.
That’s also a good point to make, I do feel good and comfortable with my neurosurgeon team.
Glad your bleed free! Thank you for the feedback!
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Hello Merl,
Thank you for your words! You are right the during i Can ask via the neurosurgeon team. It definitely is the recovery that is worrisome. I do understand that e everyone heals different so I’ve been doing some reading just to prepare myself for anything that could happen. So I’m glad and appreciate you sharing your experiences.
Good point also on the over stimulation on people around you and the empathy instead of sympathy. I think even now, what I need is empathy over sympathy, but it’s hard to explain to loved ones. And I understand, I mean I myself am trying to really process the decision, so it’s hard for other people to understand. Thank you for sharing, I’m definitely taking all these experiences and keeping them in mind.
Thanks!
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Hey Butterfly,
Ahh, now, I just want to clarify, for me… …it’s not just people that add to the overload, but rather a combination of the day, the whole day. There is a theory known as ‘Spoon Theory’ with spoons being equivalent to energy. In very basic terms I start the day with 10 spoons. Just in waking, getting up, showering and having breakfast, I’ve already used 5 spoons. That leaves me 5 spoons for the rest of the day. I could use a spoon from tomorrow, but that will mean tomorrow I only have 9 spoons (less energy) to start with and this makes my energy management even harder. If I keep using more spoons come Friday I’m so burnt out I can’t even get out of bed. So it’s all about balancing your energy use, I find groups of people exhausting. I can use 10spoons in one hour in a group environment, then I have to drive home and that’s simply dangerous.
As for family and friends understanding, truly understanding…hmm, I don’t think they can, well, not fully. They can say all the right things and be as consolatory as possible, but neurosurgery is unlike any other procedure. I thought I knew. I’d worked with people with disabilities for years. I’d studied and had a qualification. I’d had family members require neurosurgical operations, so I had ‘some’ knowledge before my journey started…
…Then my journey started… …OMG!!!
What I knew was all of the theory, the reality was far more shocking. I needed time to process it all for myself. I had to re-learn my ‘New’ limits and that was a rollercoater ride and a half. I’ve often said
“some days I could leap a tall building in a single bound, but then some days I was lucky to even crawl out of bed”
And no 2 days were ever the same.
If anybody ever tells you it’s easy, they have never been here. We know this because we’ve lived it too, so come talk to us.
Merl from the Modsupport Team
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I had my AVM removed in 2015 I was lucky and didn’t bleed out but the 3 arm I had in my temporal lobe and near just behind my eye needed surgically removed… I was in surgery for 10 hours but mine was tricky and not easy to locate…
My neuro surgeon was a gift from the world itself, he told me literally everything these guys have said
…
My honest way of explaining my after surgery feelings were weakness literally standing was difficult, sensory overload to the max and beyond… during visiting hours the nurses did make it 100 times abundantly clear that soft speech, no shouting, no irritating phones beeping, have respect for everyone… omg they meant it I turned my mobile off the slightest vibration annoyed me lights did as well as did people babbling things at me fast and loud… I do nieve we all react differently I am 8yrs after surgery and due to what was healing weird I have permanent tension jaw and nerve issues and it took me a year to get 75% of my energy back and I was 34 yrs old… I’m not trying to scare anyone but we are all different, what may seem like a regular not so massive surgery to 1 may reflect differently on you or me or the next person… I unfortunately have epilepsy so that took its toll as well… I finally found out 3yrs after surgery to learn how to feel ““normal”” again and it was accepting my normal had changed… I started being more active step by step and I did Cognitive behaviour therapy and mindfulness to overcome what had happened and how to embrace the difference in life… and trust me when I say you are allowed to be selfish after the surgery if you want peace or to be alone take it if you want your mom dad eife husband partner kids dog cat the goldfish to be with you constantly ASK … just do 1 positive thing before you have your surgery … however you can do this do it each day, meditate breathing, positive mental.attitude and relaxing sounds
… I did that every day and still do and it really does work use clear meditation music or pick AC/DC of that helps lol but try it … its worth it 
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Everyone has a unique experience. At the time (1993) I was fortunate enough to be in the care of the famous Dr Bennett Stein of Columbia Presbyterian Hospital in NYC. He told me that my AV Mal in the left parietal occipital was large and I was given the full scope of possible outcomes which left me petrified at the time but I had a great support network. It ended up requiring 3 embolizations over a 3 month period followed by 12 hour surgery after which I suffered a subdermal hematoma which had to be removed in emergency surgery. Nearly one month of inpatient rehab followed. After that many short-term memory issues and I found that my emotional feelings were far more intense. Fast forward to 2023 I feel great but still have a little bit of a memory deficit and I’m taking Depakine daily to prevent further seizures which I’ve sporadically had when I skipped my medicine or was in very emotionally challenging situations.
I had never had any procedure or broken bone etc in my entire life but go figure at the age of 30 had craniotomy as my first ever procedure after my AVM bled.
I tried to stay positive, eat well & rest prior to surgery! The hardest part I recall was the recovery coming off the pain killing drugs and not being able to eat or drink for 3 days… I was so thirsty & could only suck on a swab!
My head was numb & I had a lot of dizziness… definitely recommend resting as much as possible as it is a slow recovery but you’ll get there before you know it.
Resting & taking it easy is my best advice… the physical pain does go away & the weird feelings in your head around the incision do slowly become normal.
Again just stay positive & rest up… God bless!
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