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It’s All In My Head

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The After Effects of Brain Surgery

29th December 2017

For some reason I have struggling with the side effects in my head over the last few weeks. I am sure cold weather and being in a cold wind makes everything in my head tighten up and feel number again. When I am out I put my hood up on my coat as much as I can, but that doesn’t seem to be able to stop the tightness feelings.

Then I had a cold and with it sinus pain. I have occasionally had similar for years before- when you bend down to reach something or sneeze the pressure behind your eyes, forehead or back of head increases and all but starts to pound. But now this same pain just reminds me of the months waiting to find out what was causing a similar pain in the back of my head and increased dizziness every time I moved, coughed or strained. The pain I kept asking the G.P about and yet got no answer… I can count the number of times I ever had a headache on one hand before I had a brain tumour- so basically having even a mild ache just reminds me of it.

Then I saw a post today on a brain tumour forum where another person is struggling with the dents in their skull seemingly deepening years after surgery– they were told these were caused where they are put in a head brace during their craniotomy. Others also said they had problems with their heads often not even near their surgery site and so I thought I would write a post that may possibly help others realise their symptoms are ‘normal’. Well normal after brain surgery!

These are my symptoms today:

The first I am sure is as I had my neck muscles cut during my surgery and after have been told that some of the muscle has wasted, so I have a big dent in my neck on my right side where the muscle is ‘missing’. I know when I stretch the muscle it relieves the tightness a little, but when I wake, at the end of a long day, or am stressed I can really feel my neck muscles ache, the head numbness and my scalp pulling. Sometimes when I go out, I end up doing neck stretches as I am struggling with the aching in my neck, or the fact it feels like my head is tightening up. Cold weather definitely makes it worse. For months after surgery, no matter how I slept, I kept waking feeling like I had been laying crooked and leaning on my neck wrongly- and it took a while for the feeling to go away. I do still occasionally get this, but normally much milder.

At night I still am not able to lay in some positions without my neck hurting or head feeling tight, just lying on a pillow on my left side feels like I have been laying on a stone after a while – I just have to move. I have tried all sorts of contour and flat pillows, yet nothing seems to get rid of it. If I lay on my back I still prop my neck up on my left side with a cuddly toy to avoid me constantly tipping and twisting my neck to one side. If I am lying on my front I cannot face my right for very long before my neck muscles really start tightening. Some nights I feel I just cannot get my head comfortable.

I had my greater occipital nerve on my right side totally cut, so I know ‘why’ I have a numb head, but getting used to it is another thing! When I brush my hair, I get a referred tingle in what normally feels like 2 other places. I have had a heavy object fall on it, bashing my head and yet didn’t feel any pain - it was like it landed in cotton wool.

Just after surgery it felt like I had a 1cm layer of glue left on my head and a constant feeling of numbness. (Part of me really wishes I had known this was going to happen- but then maybe it is better to take one step at a time and not know beforehand?) Now its 19 months after surgery and most of the time I don’t feel the numbness, unless I touch my head. Then it instantly feels odd. I just about have sensation if someone else touches most areas, but I am not at all accurate in pinpointing where the touch is. If I catch my hair or the cold weather ‘gets my nerves’ I have the numb feeling back and what feels like a wig on that part of my head! I can accidentally catch my hair and not feel my scalp pulling or pain at all.

Even if someone pulls part of my hair, I cannot really feel the pain and this strange sensation feels like the area is about 2 inches away from where they are pulling. Most of the time I can cope with it fine, but occasionally it upsets me and I get frustrated with it. It’s why I cut my hair after a few months as long hair seemed I was constantly triggering this ‘numb head’ response. Now my hair is growing back, the sensations seem to have improved a little (or I have got used to them!) and the feeling of wearing a part wig has decreased (although certainly not gone). The area that is shown green on the diagram is the worst of it, although the blue area behind my ears doesn’t feel right either, I have a little more accurate, although very dulled, sensation there.

Oh and I have a really odd feeling every so often, where I lean on a seat cushion, a car seat etc at roughly the central of this green area shown above- and it is like I have just leant on a wooden board and its ‘pressing in’ the whole of my head. Like my skull ‘is’ the wooden board. Then this numbness goes down my neck and that tightens and the wig feeling comes back- and it always stays for about 5-10 minutes after no matter what I do. It feels so wrong.

I have had some spots near the scar (when the area had been healing) and could only feel a tiny bump with my fingers and then at times a sharp nerve pain somewhere near the area if I scratched it. I have made spots bleed and not felt a thing on my head, just the bump- so every so often ask someone to look at it for me to check there is not a sore area.

When I knew I was having surgery, I obviously realised I would be having a large scar where they were doing the craniotomy and understood I would need a small hole at the front of my head where they would put the drainage tube in during surgery. I didn’t realise until after the operation that I would also have an approximately 4cm long scar and subsequent dent in my head at the front where they got the drainage tube in! Touching this dent really made me squirm at first, after all it seems I can feel the sides of my skull and get my little fingers depth into it. I have been reassured that I cannot damage my brain as it is still a little further in and covered with a tough membrane, but it doesn’t stop me cringing  and putting my hood up if I walk in woodlands or anywhere near trees as I am worried I will poke a branch straight in the gap! Some times this dent itches, sometimes it feels tender and achy around the area. I can just about feel the ‘hole’ where the drainage tube was now, as sometimes it feels sore and I can feel a dented area there.

The itching has got to be one of the most annoying and constant symptoms. I don’t know that anyone else that has not had brain surgery can understand what it feels like, but my best explanation is it is like getting an itch under shoes that you cannot take off, you can only scratch through the sole and not feel much, or above or to the sides of your foot where the material of your shoe is softer, but it’s not in the right place. You cannot properly scratch it no matter what you do. Someone told me they likened it to ants crawling in their skull. There is nothing I can do to stop the itch. Of course I end up scratching it unconsciously, then realising and having to stop myself and all but sit on my hands while I wait for the itch to subside. Sometimes I can itch my neck and it helps relieve some of the feelings. Mostly I just have to ignore it- and (as I was told by my neurosurgeon) hopefully help break the neuron connections!

My hair has mostly grown back. I am told there is no obvious missing hair on my main scar, and in fact the scar is very hard to see. At the front where the dent is, if I pull my hair in the wrong direction I can just about see a patch where the hair hasn’t grown, but no one has ever told me they have noticed it unless I actually move my hair and show them. One advantage of curls!  

Picture from https://clinicalgate.com/105-occipital-neuralgia/

My head feels like a load of lumps and dents! The area of surgery literally feels like the skull has a plate on it, it sticks out more at the bottom and feels like a ridge to the side. The natural bump at the centre back of my head feels like I have less of a bump on the right side as my head is still bigger there. I assume they somehow ‘pinned’ my head during surgery- I don’t know if any of my lumps or dents are because of this?

At the back of my head almost under my right ear at what is I assume the back- base of my skull, if I rub this area it still feels bruised and tender. Occasionally I can touch it and it feels like the bone clicks. I try and avoid it!

From the day after surgery I had a really sore area on the top of my head- nowhere near either of the incisions. It felt like my hair had been ripped out and the scalp damaged from the action. After a few months it still felt extremely tender each time I touched it. Gradually this feeling has reduced and it only annoys me every so often- mainly when I am tired or run down. I have been told this is from the damaged nerve.

Sometimes I get a few sharp pains in my head, mostly at the back where the scar from the tumour is, but occasionally somewhere else. I think it is my version of a headache?

I often still touch my head, I guess in the hope I will get some feeling back. It sort of feels relaxing, yet at some point I realise yet again how little I can feel and I think it gets ‘too much’ for the nerve endings, so I end up just rubbing my head in frustration of the itch and numbness, my hair going everywhere, just trying to get it to work properly. I end up tying my hair up just to pull it all out the way so it dulls the sensations that’s its ‘wrong’.

I have been told that things can still improve, most of them within 2 years after surgery, so I hope it still keeps getting better?  But I guess it’s something I have to put up with as a side effect of being alive! I know I was told before surgery that my head would never feel the same again after, but since then I haven’t had much support at all with how it feels and if it’s ‘normal’. I guess the side effects are slightly different with everyone, and sometimes it’s better to live with hope that you will be the lucky one? Maybe my symptoms are lucky? I do appreciate they could be far worse.

19 months after surgery.

From a 30 or so staple surgery, you now cannot see any visible scar, and the dent (from muscle wastage) I can feel is hidden by my hair.

This is the only slightly visible scar - a tiny bald area and dent

Although I have to move my hair out the way to find it!

Next - “I’ll Restart Again Tomorrow”