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My experience with colloid cyst and surgical removal

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    My experience with colloid cyst and surgical removal

    Hello fellow forum members (and visitors)!

    A few months ago forums like this one, with plenty of experiences from people suffering from colloid cyst, helped me tremendously. It helped me understand the condition much better, be ready for what the surgery would be like, and what to expect post-op. Now that I have gone through the whole thing myself, I feel it's time to give back to this kind community.

    I am a 26 y.o. male. It all started around May-June 2018. I was going through a bit of an existential crisis (quarter life crisis, they call it!), and I was suffering from high levels of anxiety and stress, so I was getting used to a series of symptoms I had never experienced before. But by that time I added one more symptom to the list: very severe headaches. At the beginning I tried to get rid of them with analgesics (e.g. ibuprofen, naproxen, etc), but soon I noticed they didn't do much. The headaches were so strong I sometimes felt like my head would explode and I felt the urge to vomit. Speaking to my GP in Edinburgh they initially thought of tension headaches caused by a cervical contracture as I was indeed very stiff around my neck due to nerves. I kept on treating them with analgesics and I saw an osteopath for massage for 5 or 6 sessions. At some point they seemed to improve, but it was a false alarm, soon enough I was having them at full intensity. The GP then considered migraines. I had never experienced these but I knew from other people that while they can be excruciatingly painful they are typically episodic, whilst my headaches were almost daily, and always in the same pattern - I was OK in the morning but a headache would start around lunchtime ans it would only increase and increase after that. Moreover, I got relief by lying down for 20-30 minutes, with or without ibuprofen, which was odd.

    I then went back to my home country (Spain) and I am lucky enough that my cousin is a neurologist at the hospital. I went to the ER and she ordered a CT Scan. It was then when I found out about the 22.4 x 23.2 mm bastard, named colloid cyst, which had reached the critical size to cause severe hydrocephalus.

    I got scheduled for priority surgery around 10 days after diagnosis, with a further MRI to confirm the condition. The neurosurgeon explained that colloid cyst surgery is in fact quite simple and that, whilst the cyst is of fairly difficult access, it's not close to any of the very sensitive areas of the brain. The only possible neurological damage could be with short-term memory and, in any case, it would be transient, but it would be a very low risk. I was kind of shocked with the whole thing, but doctors didn't really give me any alternative to surgical removal, so I just trusted them and went along with it. I didn't really have time to feel fear.

    The surgery went fairly well - it was a lengthy procedure it seems, I was in the theatre for about 4-5h all in all. The neurosurgeon later explained to me that they managed to remove most of the cyst but a small leftover got stuck to the lining of the ventricles, and they didn't want to scratch to remove it so as to minimise the risk of damage to the S.T memory. Also there had been a bit more bleeding than expected, but that we would see in the first post-op CT scan. They had also carried out a ventriculostomy (an artificial hole in the ventricle to allow for CSF drainage should the natural hole not work properly even after cyst removal). I woke up from the anaesthesia in the recovery room, still groggy, and I had many more IVs on my arms than before the surgery, and also a urine catheter. I was also wearing a compression turban that was really, really tight (my ears hurt a lot) and there was a thin wire coming from the top of my head leading to a plastic bag - an external drainage to get the blood out.

    Soon after waking up I was able to talk, remember everything, recognise people, so my biggest concerns vanished and I sighed in relief. Sure, I felt odd, but that was kind of expected. I only spent a night in the recovery room, during the second day I was taken up to the neurosurgery floor. I spent a total of one week at the hospital, to allow for the external drainage to take all the blood out - eventually the CSF liquid coming out was totally transparent, so at that point they pinched the drainage for 48h and monitored my development. In terms of what I felt after the surgery, as the anaesthesia wore off, I mainly cohabited with a constant, mild to moderate headache, annoying but it didn't prevent me from resting, and it was certainly nothing like the headaches I endured prior to the surgery. I was more disturbed by the catheter and the multiple IVs, and the necessity to keep my head at a certain angle to allow for drainage, that really prevented me from sleeping well.

    After the 3rd day, 1 day after pinching the drainage, I got the urine catheter removed as well as one of the IVs, and I was encouraged to sit down (till then I was only lying on the hospital bed) and start walking as I felt confident to do it. I felt dizzy at the beginning, incredibly dizzy, but I took it easy and eventually I was walking up and down the floor and even taking the lift down to have a walk around the hospital, always leaning on my new best friend the drainage stick, dragging it with me.

    On the 4th day, 2 days after pinching the drainage, I got another CT scan and everything look well enough. I then got the turban removed. It was a very painful moment: perhaps it is different depending on the hospital/country/surgeon, but in my case they didn't shave the area, they only shaved the very incision line. As my hair was quite long at the time, a lot of it got stuck around the incision area due to the dry blood. Then they had to sew up the semi-open wound. They offered local anaesthesia, but the surgeon said it was only one puncture with the needle anyway, so I accepted to do it without. BIG mistake, it was ****ing painful. If offered, get it! I was told by the surgeon after that I could get a shower and that I could touch the area, in fact I was encouraged to gently massage it with warm water and soap to start softening the dry blood and stuff. I was left alone with my hospital roommate, and when I went to bathroom and looked myself in the mirror, I almost fainted from shock! I had been told by the neurosurgeon prior to the surgery that they'd try to excise the cyst via neuroendoscopy, which is minimally invasive. However it seems that a last minute decision was to instead open in a traditional craniotomy way. This means, I had a HUGE C-shaped scar with about 10 surgical staples and of course no hair on the incision line, so it was impossible not to stare at it. I showered as well as I could, but I was unable to look at myself in the mirror again. Once back in bed, I couldn't sleep all night long, with the disturbing thought that I now looked like Frankestein and that I'd be ugly forever or at least for a very long time.

    The next day I was crying all the time because of tiredness and this depressing thought. The nurses comforted me by saying that once the staples were removed and my hair grew a bit I wouldn't notice the scar, but I didn't want to listen.

    Once I got sent home, everything improved dramatically (the wonders of mamma's food and a comfortable bed). I started walking up and down the mountain and around my town to gain some fitness again, smoothly. 10 days after discharge I went back to get the staples removed. I was a bit scared, but truly, it didn't hurt at all. I barely noticed it. By then, I had started to notice a degree of swelling around the incision line. This swelling was soft, like liquid under the skin. The neurosurgeon said this was most likely a seroma, due to the skull bone flap not yet having welded, so CSF liquid escaped through the holes, but that it would eventually reabsorb and we didn't have to worry. To be honest, it eventually grew to a worrying size, but I was lucky to have enough hair to cover it, so I could do a fairly normal life. I noticed the bump of liquid would inflate when tilting my head down or lying flat - it was particularly large after getting up in the morning, but as the day passed it would shrink. 4-5 weeks after discharge (that is, 5-6 weeks after surgery) I noticed that the bump had disappeared and that the position of my head wouldn't matter - the bone had finally healed!

    In terms of pain, I did suffer from annoying headaches for all the time at the hospital and still for some more days after discharge. To an extent, I blame the compression turban for most of them - having something really tight around your head 24/7 does cause tension headache. The headaches were also present during the seroma stage, in this case I blame the undue pressure caused by the accumulation of liquid, particularly when lying flat or tilting my head down. But once I was without the turban and without the seroma, the headaches were gone, and they seem they're gone for good. Hallelujah! Another thing that was painful for quite a while was anything that meant an increase of intracranial pressure, that is: coughing, sneezing, having a hard bowel movement. Make sure you eat plenty of fibre and drink lots of liquid to avoid the latter one, and for the other two, you'll have to endure the pain (it's bearable, but quite annoying). This took the longest to go away, perhaps about 8 weeks after surgery.

    Last but not least, the nurses weren't offering gratuitous consolation, they were right! After I got rid of the staples and my hair grew a bit more, and particularly after a very good job by my hairdresser, nobody can now tell I once got my skull wide opened. I guess the aesthetic problem will be quite an issue for bald or people with receding hair, but even then, once the staples are gone and the scar has healed, it's a very very discrete scar. The only thing that reminds me of the surgery is the little screw I can feel when I touch my scalp at the incision site (as they fix the bone flap with screws and little plates), and the yearly CT scan I'll have to go through to ensure the wee bastard doesn't grow again - which is unfortunately always a risk with colloid cysts, specially if the excision isn't complete.

    So, in summary, I understand if you're afraid to be facing this kind of surgery. It's scary to have your head drilled and part of your skull removed and that they go across your brain to work, despite all the reassurances from the neurosurgeons. It's the most sensitive part of your body and so many things can go wrong. But if you're in the right hands, there's nothing to be afraid of, and to be honest, I've had shoulder surgery too and the pain, limitations, and the lengthy rehab were much, much worse than this brain surgery. Plus, you have no alternative, because a cyst causing hydrocephalus MUST be removed in any case, or else you face the prospect of a high risk of sudden death or brain haemorrhage.

    So my advice to you:

    - Insist with your doctor if you have very intense headaches that follow some kind of pattern (e.g. time wise, or posture wise), it's very easy for them to attribute them to very quotidian factors like stress, muscular tension or migraines, but if you don't respond to analgesics you should insist to at least get a CT Scan done to rule out things like a colloid cyst or even worse conditions.
    - Be brave, face the tiger and get the wee bastard out of your system. Within 2 months you'll have your whole life back, which is priceless to live when you have no migraine-like headaches every day.
    - It gives you a greaaaat story to tell your acquaintances, it's a great ice-breaker!!!

    If anybody has any questions I'm more than happy to answer them ;)

    Memory deficits?

    Hi xavitus1316:

    Thanks for sharing your experience! Are you back to driving yet? Is remembering where you parked the car a problem? Have you noticed any residual memory deficits or behavioral disturbances? My neurosurgeon also did a third ventriculostomy but it didn't take and I had to have a VP shunt put in anyways. Thanks again.



      Originally posted by Levi View Post
      Hi xavitus1316:

      Thanks for sharing your experience! Are you back to driving yet? Is remembering where you parked the car a problem? Have you noticed any residual memory deficits or behavioral disturbances? My neurosurgeon also did a third ventriculostomy but it didn't take and I had to have a VP shunt put in anyways. Thanks again.

      Hi Levi! I haven't had any residual memory deficits, not even early after surgery. I was always quite sharp. I felt like my vision would get blurry sometimes and I had to focus consciously, but it ended up disappearing, same as shaky hands and muscular spasms: they smoothly cleared away as the brain healed.

      In terms of driving again, I think I waited for 2 weeks after discharge (so 3 weeks post-op), pretty much when I felt confident enough to do it.

      I'm sorry to hear you had to get a VP shunt put in, I guess that means they had to open twice! 1 and 3 month post-op CT scans showed that hydrocephalus was no longer present and I was headache-free, so no need to consider a shunt in my case. The only comment made by the neurosurgeon is that my ventricles are bigger than what would be expected from a 26 year-old brain, most likely they've expanded due to long-lasting accumulation of CSF liquid. However, it has no functional implications.