Hi, I am due a craniotomy june 19th for an unruptured fistula,had 3 embolizations last year, I’m in 2 minds to not have it done as the risks seem horrendous, I’m so scared obviously,does life return to normal? can you drive again? has anyone wished they didn’t have it done as they will feel worse now? mine is at the back of head,i have glaucoma already which raises my chances of blindness as the operation will entail laying on my front, it is going to be done shealth guided, any help please??
Hi castle,
I’m from Essex aswell lol. I had surgery last may to remove my avm from my right temporal lobe after I suffered a bleed. I had two rounds of gamma before hand, but unfortunately suffered a bleed during the waiting period. After craniotomy you do loose your license for a bit, I can’t remember how long the surgeon said, I had a seizure 5 weeks after surgery so I lost my license for a year. I am just coming up to being a year seizure free so I am in the process of applying for my license back:crossed_fingers:t2:. I am so glad I had it surgically removed,I was absolutely scared stiff before hand. It’s the unknown that gets to you!! It’s natural to be scared, worried, we wouldn’t be human if we didn’t. Today I am pretty much back to normal, had a few hiccups along the way but hey I’m still alive and I’m avm free. I am sure you will be absolutely fine in your recovery. Which hospital are you being treated at? I will have my 
Crossed for you on 19th.
All the best xx
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Continuing the discussion from Driving after craniotomy:
Hi,I’m going to queens in romford,thankyou for your reply,do they cut your jaw as well ? I’m just so worried I’ll be worse after,as not got any problems since they embolized last year ,and the craniotomy is a precaution,for something that may never happen,xx
Hey Castle,
Some of these questions really depend on the location of your AVM. As you state you’ve had previous treatments (embolizations), so these too may impact the location of any future craniotomy. This would be something you’d need to discuss with your surgeon. I have had a craniotomy with 3 plates holding the bone flap back in place. My craniotomy site was at the top of my skull, slightly right of the midline. Unfortunately my balding swede (skull) shows all the scars and holes and I joke that 'most baldy’s are like a bowling ball, mine just has the finger holes to go with it".
After the surgeries I’ve had (x6) my scalp looks more like a badly drawn road map, I cover it all with a baseball cap.
They wanted to take my license but living miles from anywhere I begged them not to as it would isolate me too much. My wife gave them assurances that I would not be driving without having prior approval from the surgeons and they begrudgingly agreed, which in hindsight was very fortunate as not 3 months later we had a major bush fire rip through the area and I needed to evacuate.
I have since seen the surgeons and been given the OK to drive, supervised. Usually I have a co-driver, my wife, to take over if required. Tiredness and bright light can be an issue. Light flashing through trees is awful but otherwise I can manage OK. I have driven independently but limit my distance from home, so that if I become incapacitated someone can come and get me. I NEVER drive if I consider I could be a risk to myself or others. I also have to annually reaffirm my ability to drive which has to be signed off on by both the surgeon and GP to retain my licence.
So that’s a bit of my experience with driving and craniotomies. But I must say here that this will all depend on the recommendations of your surgeon as I know of other patients who have permanently had their licences revoked.
Hope it helps.
Merl from the Moderator Support Team
Hey snap, that’s where I had my surgery!!! Who is doing your surgery mr v?. I can honestly say I haven’t a bad word to say about my stay in hospital hope that reassures you a bit. They were very caring. I never had my jaw cut, my incision went from my right ear, then towards the back of my head and back to just below my temple. It really does depend on where the location and size of your avm is, my scar isn’t visible now my hair has grown back. It is a very hard to decision to make when you feel relatively fine, but I can honestly say I do not regret it one bit, you are in safe hands but I understand the worry when it’s not an emergency, like I said before, I opted for gamma knife,embolisation wasn’t an option for me but if I had been given the choice surgery or not I really wouldn’t know what I would of chosen as I had no symptoms from my avm apart from the bruit in my right ear. Hope this helps a little,
All the best
Amanda.
Hi yes I have mr v,and Teresa is the lovely neuro nurse who I often ring!! its a shame they don’t have a group where you can actually meet recovered people,might ring again tomorrow!!
yes, still all scary, I wonder if anyone has done a runner as been wheeled to theatre,i feel I could do that I’m in such a state
Yes Teresa is great, she took very good care of me and really reassured me, I often rang her with my worries and she gets back to you straight away. Dr v is cool as-well, I think he needed a bit of therapy after dealing with me and my melt downs lol
“I wonder if anyone has done a runner as been wheeled to theatre”
The answer is “No” by the time they’re wheeling you in you’ve already had the pre-med.
I’m not gonna tell you don’t stress 'cos that is simply impossible, but just know that stressing about it is about as much use as a waterproof teabag. The philosopher in me tells me acceptance is much better (You can tell the philosopher in me to ‘Piss off’, I would) The realist in me completely understands. I stress to the max with each and every surgery. I ‘try’ to keep myself occupied doing something, anything to divert my mind. ‘try’ cos I’m certainly not always successful but mulling the same thing over and over and over drives me bonkers. Personally, I had to find another focus, for my own sanity.
Best of luck with it all and please do keep us informed, we’re here if you need.
Merl from the Moderator Support Team
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I agree, getting an activity you can focus on while you’re waiting for appointments and dates to come along can really stop you bothering more than you need. I found it helped. A small hobby but ideally one you’re interested in and which requires a bit of thinking to do it.
Thankyou,yes I’m trying to go the gym,i love reading,but find my mind wondering.im finding work really hard,we do 12 hour shifts and nights,it’s taken its toll I’m so exhausted,
Hello Castle,
Exactly three years ago- same date as yours I had a craniotomy right side to remove an AVM, I had epilepsy and many many debilitating migraines. I had a busy freelance job until the massive seizures and drove loads. Three years on I am doing everything more or less that I did then- pre seizure, drive, work go to the gym the only things I don’t do are drink and go to loud live music events- both of which I used to love, however now I do different quieter things. I don’t regret my descision for a moment. The best advice I had was turn off your phone for the first two weeks, you will be tired. It was true. I made myself a playlist for the the after in HDU and sorted out foods I liked and gave them to my family and partner to bring me, but the main thing was finding good restful stuff to listen to, spoken word and music. It’s good to distract yourself. I found this worked a treat, podcasts- excellent!
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Aah thankyou,were you in agony afterwards? Do you have drains ect in your head? And how do you sleep when heads been cut open as guessing g you can’t lay on it? X
Hey Castle,
I have 2 ‘drains’ (shunts), my initial shunt was on the on the right hand side of my skull, the tubing ran from a burrhole about 2inches above my ear, behind my ear, to a valve, down my neck, over my collarbone, down the centre of my sternum, to my peritoneal cavity. This ‘appliance’(as the medicos call it) fractured and was replaced. The distal end of that shunt become disconnected from the valve and was replaced. This was found to be faulty and the entire shunt train was replaced. This shunt takes a different route and instead of running down my sternum runs down over my ribcage.
Initially I couldn’t sleep on my right side, but once the staples were removed from my head and things healed it wasn’t too bad. There was a bit of tenderness from my head all the way to my peritoneal along the length of the shunt, but after getting use to it moving under the skin with body movement, it feels part of me. As for the craniotomy holes/scars, although mine is on top of my crown, the actual incision was the full length from my forehead all the way to the back of my neck and again once healed was fairly OK. I say fairly as the ‘normal’ healing pains continued for a bit but as I say ‘fairly OK’, uncomfortable rather than painful.
The biggest issues I have had are the headaches. I thought I knew what a headache was, post surgery my whole idea of a headache expanded MASSIVELY. I had never had a headache on the intensity pre surgery compared to the post surgery. I was very active pre-surgery, working 5-6days/week. Post surgery that decreased and has never gotten back to pre surgery levels.
I know of people who have recovered to 90% of former levels and my situation may well be out of the norm but to be expecting yourself to be 100% within a set time period is setting yourself up for failure. One thing I have learnt through this whole process is set your self expectations low. I set mine too high and was so very disappointed when I couldn’t reach them. I pushed to recover and pushed too hard, too fast and I’m still paying for that today.
Take the time your body needs to recover. Your body will tell you, you just have to listen to it. I didn’t. HINT: Don’t do that.
Merl from the Moderator Support Team
Hi. I had a craniotomy after an embolization late last August for an unruptured AVM about 2 1/2" behind my right ear. I wasn’t allowed to drive for two weeks afterwards simply because of the meds they temporarily put me on. I’ve had NO problems at all with driving and my life is completely back to normal. I only tired more easily and slept more for about a month after the surgery. I also have glaucoma but surgery didn’t make it any worse, I just put in my drops minutes before wheeling off to the OR to counteract the increased pressure being on my front. I had no headaches afterwards, in fact my optical migraines disappeared! I was on some pretty good pain meds for a few weeks and slept with ice packs on my head for the rest of the month for the scalp pain. I normally sleep on my tummy anyway so having my surgery site where it was didn’t matter, I actually got good at sleeping with that ice pack balanced on the surgery site. They were extra large ones my mom made: 2/3 water 1/3 rubbing alcohol in a seal-a-meal plastic bag.
Let your body tell you how much to do at any given time, it will take a while to heal and get back to whatever your new normal will be.
Hi you have made my day, I’m hoping mine goes as well,did you have to inform the dvla? and who decided you could drive again, is it the surgeon? good idea with the drops,thank you .Does your hair itch when its growing back? ive just had mine cut to shoulders as it was really long and I though I’m going to look so stupid! I’m going to queens in Romford , where did you go?
Castle,
You may already need to stop driving, depending on where your AVM is. Your doctor is the person to whom DVLA look to make the decisions. Just ask the doctor at each stage whether you should drive or not. I can’t remember when I told DVLA about not driving but I stopped driving and told them subsequently. Im sure we are obliged to be prompt.
When it came to restarting, my doctor & I completed a form that they sent us, my doctor was comfortable I was safe to drive and it was simply a matter of a conversation with DVLA that got me restarted. But it very much depends on where your AVM is, any risk of seizure (= main blocker) and whether they formally revoke your licence.
The main thing here is to get rid of a stroke risk by having your AVM operated on. The ability to drive, or not, is a significant thing but has to be much lower importance than your stroke risk.
I’ll try to find the DVLA guidance for you. There are several categories of AVM that DVLA recognise and score differently.
Best wishes,
Richard
Main DVLA page:
There is another with guidance for doctors. Ill find that.
Here is the information for doctors about AVMs. There are several categories, as I say:
Having read a few of the pages on surrendering your licence, it looks like voluntarily stopping and talking to DVLA before being banned is advantageous when it comes to getting your licence back.
I have to say my conversations with DVLA were very helpful and not jobsworth at all. I hope you get a good experience.
The rules in the UK are a lot different from the US, so beware making comparisons with other places.
Very best wishes,
Richard
Castle, the problem with the DVLA is that everything moves slowly, for example my own experiences shown me that when I told them about my bleed its an automatic 6 moth ban but I wasn’t able to drive for around a year, Looking back on that time now I know they do have the best intentions its for not only your safety but everyone’s safety.
One of my posts as a user before moderating : DVLA Medical Panel? , you can see the time line there