Awake Craniotomy

It’s a lot to take in but as long as all goes well the actual operation is fine the only thing I noticed pain wise was the catheter going up . And the blood brain barrier being cut apart from that talking to the anaesthesia and moving left hand and fingers . It looks like if you have the tumour debulk and not a total removal you have a better result I had total removal. That’s what caused me so many problems post operation so my neurologist reckons anyway 

I am due to have an awake craniotomy.

I was diagnosis with a brain tumor to left temporal lobe (affects memory, speech, language comprehension).

I was wondering if anyone has been through an craniotomy and the affects afterwards that followed. My mental health is already affected with receiving this news at 27. And I am feeling low because of the emotions it is causing my family, feel upset and hopeless.

I am scared that I am going to wake up and not be able to cope with the amount affects it will have on my quality of life. As I work as a nurse and I won't be able to return to work, if speech, memory, comprehension of language is affected.

Well wishes

Sorry to hear about your diagnosis and anxiety. From what I understand, the reason that surgeons choose to do an awake craniotomy (rather than a non-awake one), is so that they can check for any effects the surgery is having during the procedure and minimise impact on other parts of the brain and therefore any post-surgery side-effects.

I don't know any statistics about waking up, but I have had this done twice and both times, the awake part was surprisingly low stress. I was aware of things going on around me, but sort of on the edge of sleep. I certainly felt less anxious than, say, going to the dentist. I imagine this is a combination of the anaesthetics and other medications they use. Have you had the chance to speak to someone in your care team about your concerns?

All the best

Sorry to hear that phoebe I had one in 2017 I don’t want to put you off I had to go through with it I had 2 tumours had one taken out via awake craniotomy the other can’t be operated on there’s pluses and minuses plus is they shouldn’t do great deal of damage mine was going great until I couldn’t move my left side or talk as asked me to do thought out the operation But it took about 4 weeks to gain my speech and left side movement but my anxiety and mental health was terrible after but when changed my medication that helped a lot I was originally put on keppra for seizure control after the op then changed to lamictal I improved a lot but not back to my old self hope I haven’t put you off if I need again I would do again now I know what might happen . Didn’t get it explained to me great as to what might happen

HI Phoebe95

a warm welcome. So sorry to hear about what you are going through. All those emotions you are feeling are perfectly natural so don't beat yourself up about those. It's the strongest most resilient among us who show those emotions s let them flow.

I'm supporting my husband through his brain tumour journey. He was first diagnosed in Sept 2020 and had an awake craniotomy. Before the surgery we met the speech/language therapist who would be present throughout the surgery. She took him through some basic speech/language and comprehension questions, asked him to list as many things in a minute as he could eg how many animals could he list, then asked for topics of conversation about things he enjoyed eg films, travel. All of those answers gave her a baseline to work from during the op. He was asleep at the start then wakened for a while as they worked to debulk the tumour. If the speech therapist didn't like the quality of his answer or it took too long to answer, the neurosurgeon didn't cut. It seemed to be all very controlled and calm. He was put back to sleep for the final part of the op. By the next day he was up and the following day he was home.

Immediately after the op, he was more confused and his speech was poorer but as he recovered from the surgery and the swelling in the brain receded he greatly improved.  

You'll need to be patient with yourself and not panic that the way you feel day one is the way its always going to be. It's a major op and you need to give your body time to heal.

This group is a safe and supportive space so please reach out anytime. We're here for you. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now I'm sending you a huge virtual hug and lots of positive energy. Stay strong,

love n hugs

Wee Me xx

  sorry to ask, but due to speech difficulty was your husband seen by the speech and language therapist post op, to help with regaining speech. My family will be looking after me at home, and the thought of not being able to tell them how I'm feeling "if I need a cup of tea" or if I have a complication, eg. Headaches worsen. I would I be able to tell them.

I keep thinking about the emotional impact on my family, this is too much for them. Not fair and they won't understand why I cant speak or why I am confused...this will cause frustration and feel like they are not incontrol.(don't want to overload). But how did you manage your husbands emotions? It must have taken its toll on yourself x

How did you manage your emotions, was their support for you post op? I was on Dexamethasone steriods and I felt like I was delusional, and couldn't think of the light at the end of the tunnel (felt like there was no hope for me).

I understand I cannot control my emotions, but I feel undergoing a brain surgery. Is only going to compromise my mental health further 

Hey Phoebe,

I went through surgery last year, I'm 27 as well and used to work as a bus driver. I feel like I am in a good position to talk about the whole thing with you as I have personal experience with a lot of the same fears that you've talked about.

First is the actual craniotomy. I was dead nervous going into it. I was seen in Edinburgh, and I can't speak to what the exact procedure is at other hospitals, but my experience was fairly good. I had an asleep-awake surgery (as opposed to an asleep-awake-asleep where they put you back under to close you up).

After waiting in a waiting room for a while, I was taken to the anesthesiologist where I had a normal IV put in and was put under. While I was under they put in my catheter, central line and another IV. I don't remember falling asleep or anything between then and waking up. I do remember waking up with them calling my name, and the air tube being taken out of my mouth (vaguely remember it feeling like an oversized inhaler being taken out). Much like others, I felt fairly calm during the entire procedure. If I remember right, they said beforehand that the anaesthetic isn't fully turned off, and that tracks with my experience. I felt calm and relaxed, a bit like I had had a few pints on a relaxed night out! My head was held in place by a clamp and a sheet hid a lot of stuff from my view to my left, as I was facing right slightly on my side. I had my speech therapist sitting right in front of me and could see the two anaesthetists just behind her, all of whom I had had a chance to meet and talk with before the surgery. Through the surgery, I felt absolutely no pain at all. I talked nearly constantly with the speech therapist, occasionally doing wee tasks like raising my right arm (related to the part of the brain that was being operated on), creating stories from image cards or listing the names of things on the cards. I'm pretty sure I spent a load of time speaking about my D&D game as well, but I can't really remember! My speech therapist was great and kept the conversation on light topics. I was given a 'sooky' (a wet sponge on a stick) whenever I needed it with all my talking giving me a dry throat. My perception of time was very warped, the surgery took well over four hours but it genuinely felt like one.

During the procedure, the strength and dexterity in my right arm and hand became impaired. I don't remember much about that during the surgery, aside from my arm feeling heavy.

The only part of the process that was painful was the closing up. While there was no pain with the skull being closed and sealed, there was a feeling of strong pressure, much like a bad headache but without the pain. I will be honest, the painful part was the staples being put in. They administered a local anaesthetic and then went to town. It was quick but pretty sore. The anaesthetist spotted my pain and was able to both up my painkillers and tell the surgeon so he could give more local anaesthetics.

Once that was all done I was unhooked from the head clamp and lifted to a normal hospital bed. I then got moved to a post-surgery room where I had a chat with some younger doctors and got given a wee cuppa and a biscuit. My wife was called around the same time to let her know I was out. I was then moved to a communal high-dependency ward for a night before being moved again to my own room. The catheter and central line were both removed in the high-dependency ward, and the IVs were removed a day or two later in my own room.

After the surgery, I slept loads. Most of the first day or two was spent asleep. I had pretty some horrible headaches and general bruising pain around the wound. I heard this weird dripping noise in my left ear that turned out to be a common side effect. I also found it hard to speak at any speed, though my speech therapist explained that it was temporary, likely due to brain swelling that would go down over time (and she was right).

The wound was painful, bruised and swollen for some weeks after the surgery, but healed well. The staples were taken out at outpatient appointments, which was surprisingly painless.

The main side-effect of the surgery was a persistent weakness and lack of proprioception and sensation from my right shoulder down my arm. This was treated by physiotherapy in the hospital and then regular OT and Physio appointments afterwards for 6+ months. I've now regained almost full function in my arm and hand but still have difficulty with a lot of fine motor things like buttons, tying shoes and writing. I should mention that this was because of the location of my tumour, and the risk of this happening was explained to me by the surgeon beforehand. Your tumour will probably be sitting in a bit of the brain that controls something else so you'll need to speak to your surgeon to get a better idea of what might be affected.

In terms of work, I know how you feel. I had to give up my job just before surgery due to seizures caused by the tumour. It was a massive shift for me, and it took me a long time to come to terms with my inability to provide for my family for the time being. There was a lot of money-related stress that added to the situation. I think the best thing you can do is find local charities and organisations that can help with your specific needs. They are there to help people that need it, and sometimes it is yourself that needs it. I know that food banks, my local church, benefit helpers etc were a lifesaver for me and my family and helped us through a tough financial time. Your needs might be more about mental health, work advice etc but find people that can help and ask for that help without shame.

Just remember that a lot of the effects of the surgery will slowly disappear over the following year, so don't freak out if you find yourself handicapped immediately after the surgery. As nice as it would be to come out healthy as a horse!

My subjective advice is to find things to ground you. For me, it was my faith and family but obviously, that will vary from person to person. These things that matter are the things you should focus on while you go through this. Work is just work, even if it's enjoyable. I know how hard it is, but try not to overload yourself with what might happen down the line. Focus on the here and now and take it one step at a time, keeping yourself grounded in those foundations daily.

I genuinely wish you all the best, and if you have any questions just ask away. We're all happy to help.

- Highlad

Ask away! He saw her just for a chat later that day and the next day in the hospital but there was no need for speech therapy. His tumour was in Broca's area of the brain so all his symptoms were speech/language/ understanding related. Even now over 2 and a half years down the line his speech is on the whole ok- he gets confused over the words and what he is trying to say but the symptoms are more like dementia. 

I see that Highlad has given a great first hand account so hopefully that's help too.

There's also a section on the main website you might want to share with your family to ease their minds a  bit here. Supporting someone | Macmillan Cancer Support. There's also a group for carer's that they might want to take a look at. Carers only forum - Macmillan Online Community  We're here for them too and personally I've drawn a lot of support from this community over the last couple of years.

love n hugs

Wee Me xx

I had mine private as I got told by the hospital the ambulance took me to that I’m going to die and you need your family round you and do I want a priest having been told that and not given to much chance to live I took the private option but the after care was pretty shit to tell you the truth had to chase everything up myself but now I’m on the nhs for my chemo I’m a lot more happier with the after care just wish that the hospital had sent me to addenbrookes for a second opinion luckily I had the option of bupa which many haven’t so I’m sure everything you need will be in place