I (25F) was diagnosed with a 3.3cm right parietal-occipital AVM in 2010. I’ve had 3 x gamma knife surgery which sadly have been unsuccessful - in hindsight my doctors have decided that perhaps my AVM was a little big to be treated with gamma knife.
11 years later I’ve made it through all the treatments and horrific side effects and graduated medical school, I finally started work as a junior doctor last August which has proved tiring but amazing. This has also coincided with my Neurosurgeon stating that my AVM now looks unstable and my only remaining option is a craniotomy which he recommends I have done ASAP. He is an excellent man and I trust his judgement entirely but I know from my own work that often we don’t lay out the really harsh truth of surgeries to patients to avoid extreme anxiety which leads me to the following questions:
Is there anything I can do to prepare myself for surgery to aid recovery? Get in shape, lose/gain weight, prepare a hospital bag etc? I’m looking at a year long wait due to work commitments so I have time to prepare.
What can I expect by way of immediate and delayed post surgical symptoms?
How long before I’m ‘back to my normal’ and can think about going back to work?
I understand everyone’s experience is different but I’d be grateful to hear some of your experiences. Wishing you all well!
Hey Jessie,
I’m sorry to say but that question is a bit like asking ‘How long is a piece of string?’ There are just too many variables. I have had the ‘joy’ of enduring 6 neurosurgeries (including a craniotomy) and none of them have been the same in recovery. My first surgery was not pleasant at all. I did eventually recover enough to return to my former employment, it took months for things to get back to anything like ‘normal’, but I did get there. Then came the 2nd surgery and I thought my recovery would be similar, it was not. I tried to use my first recovery as a gauge for my 2nd and as bad as I thought my first operation was my 2nd was worse, MUCH worse. I got very frustrated with self as I wasn’t meeting my own mental milestones ie ‘By such and such a date I want to be back at work’ and when that didn’t happen GGrrrrrrrrr. That 2nd recovery was a slowly, slowly thing. Me and ‘slowly, slowly’ are not a good mix and I fought against it. I did get back to work, part time, eventually I worked up to full time hours.
Then came 2013, this was a real bad year for me and I ended up having 3 neurosurgeries that year and these knocked me REALLY HARD. I tried to use my past experiences of the other 2 operations but none of them were alike and try as I might I never have gotten back to my former profession which has been very hard to accept.
My recommendations here: Be kind to yourself.
Take the time you need to fully recover
Listen to your own body. It will tell you when enough is enough, but only if you listen.
Do Not be setting yourself limits. I often explain it as : Today I could leap a tall building in a single bound (Yea, OK, bit of an exaggeration) But tomorrow I might be lucky to be able to crawl out of bed. I just never know.
I say all of this because that is exactly what I didn’t do and I’ve often questioned myself that if I’d done those things and not pushed my limits could I have been in a better position than I am today. I’ll never know, but what I do know is that by not listening to my body and pushing my limits I’ve made things a lot harder for myself. So, ahhhh, Don’t be doing THAT.
Quite unfortunately, at times - but, he’s right on the money on this one - there is no typical outcomes in this. Some of us do very well, some - well, they aren’t so fortunate
From the sounds of things you’re not a candidate for an embolization < this, “usually” will give you the ability to recover much quicker than a craniotomy, if it is possible
But, what you covered in your post is what I am dealing with right now. Everything I was doing professionally stopped, and I am still not quite sure what to do or how to handle it. I feel very lucky to feel as well as I do right now - but, our business has suffered due to my health.
Personally - this is just my opinion & that’s all it is -
One - make sure you’re working with the best possible neurological team that you can get your hands on
Two - you made it this far(you made it through medical school) do your best & hope for the best < it’s how I treat every day. . . So far, I have been very fortunate
I think the thoughts I have are to just rationalise the need for a craniotomy with yourself. Like Mike, I had an embolization, and I’d say I was scared enough of that initially, so I don’t have craniotomy experience to share. I do think hanging round here, reading the stories of others helped me to get used to the idea that brain surgery was necessary and that there is every reasonable chance of a good outcome.
I think reading, engaging with people who are going through this stuff, is a helpful thing but I agree with the guys: it’s impossible to know how long recovery will take because it is so variable.
First I would say congratulations – medical school is a huge achievement for anyone and with your medical challenges its, well, astounding. Well Done!!
Here are a few rambling thoughts:
Get a 2nd opinion. I know you trust your doctor completely but I believe it always helps to hear another perspective. The best of doctors / surgeons we’ve experienced welcome it. You might even ask their recommendation on who to go to-- reinforces you trust them. There are no easy answers and many options for how aggressively to treat, so what’s the downside?
Ensure you have a strong support network. You are not in this alone and while you might not always feel comfortable sharing and asking for help (like me), give others the “gift” of helping. I continue to be amazed at the joy in helping others so give others the opportunity for that joy.
If you truly want to know all the “harsh truths”, ask them to be blunt. Explain you are also medicine, understand the need to minimize anxiety, but are comfortable with the harsh truths and that for you, knowledge brings peace of mind. That said, sometimes I rely on some level of “ignorance is bliss”. Worst case outcome is pretty clear and sometimes learning all the various possible things that “might” occur just gives me more to worry about.
Find as much peace as possible. Whatever works best for you… reading, praying, talking with others, meditating, exercise – whatever.
Be patient. As others have stated, what recovery looks like is impossible to predict. So hope for the best but prepare for the worst (mentally in particular).
Wow, Med School that is awesome. It has to help understand a lot more than many us when we take the AVM news. I went through a process post bleed where there was two options, gamma knife and craniotomy. A few scans later including a second angio, the two neurosurgeons reviewed my case together. I met with my original, he laid the risks out and when asked if it was him, what would he do, response was gamma knife. Given he would be doing the surgery I took it as gospel, he referred me to his partner and away we went.
I loved both docs, they were kind but also matter of fact and would answer any question I had. I prefaced it with I like direct. If you think your neuro is soft shoeing a bit, I would call him out on it or seek a second opinion. Your brain, he needs to answer your questions frankly while we all know there is no guarantees with brains. I was told 95% chance of success with one treatment of gamma, I took that as a s good as it gets percentage wise!
If the option was craniotomy, I was going to get in the best physical condition possible awaiting surgery. I was fit before hand but was going to exercise like crazy, eat a strict diet and sleep as much as possible. The big three of health, diet, exercise and sleep. My thinking was the better physical condition, the better impact on outcome and recovery.
Sorry to be so long winded, know that we are in your corner.
I had my brain craniotomy surgeries when I was 11 years old. I was in the hospital from late August to the beginning of November. When I was in the hospital still had homework to do. No escaping that. Was in good physical health by beginning of November but still had my stitches until the start of December. Hope everything goes well for you.
