I had a craniotomy to remove a cyst in January and I struggle with fatigue and headaches and live in a shadow of my preoperative state.
Because of the operation and recovery being slow I have had a lot of time off work though I have returned now on a phased return. Fatigue is my biggest problem and keeps knocking me back.
One of my other problems has been my sleep, the last few months has been terrible and I reguarly wake much to early or struggle to get off.
As a result last night I started reading why people have problems sleeping and I quickly identified things I could relate to.
For example: since having the operation I recently found out my cyst has come back so I worry I may need another craniotomy. I work nightshift in a busy factory,I feel frustrated at losing my driving licence and having to rely on others, I have lost and still am losing a lot of money in wages which can't continue indefinitely, I seem to fall out with the wife regularly over trivial things , my elderly parents are both having a bad time with their health and live far away, and a few smaller worries.
Before the operation life was good and any stress I could burn off with a long bike ride or day out some where nice.
So to get back to my question - how do you separate operation recovery from what I think must be secondary stress related symptons.
I always thought of myself as not a stressful person and many of my appraisals in the past use phrases stating how calm I am under pressure and my friends say I am really laid back.
But after reading why people struggle to sleep I think it is because I am being stressed by a mixture of things but I have not thought about it as a collective thing or just ignored it.
It occurred to me that people lose sleep for all sorts of reasons and it is a health problem in its own right.
And if you have a medical problem with your head the symptons can be muddled up or disguised so you think it's something else when in reality it is probably a bit of both.
When I recently asked my neurosurgeon about fatigue and he said it won't be cured by more surgery I was not impressed but now I think he knew more than he was saying.
I have only just read about sleep and stress and I want a plan to put things right as I think if I can manage all the stress things then my head will heal quicker and I will sleep better and I get my life back and energy back.
Just not sure what to do next and wonder if any of you relate or got similar problem.
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Mazvol
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'Before' I was one of those terrifying creatures who just got on with absolutely anything, calm, fuss-free, and straight to the point. For the last 18 months or so, I've been mainly telling myself not to be an idiot. It's not so much "What's that pain?" or "What if this weird visual stuff IS the third, 'risky' aneurysm?", it's utterly bloody ludicrous stuff, like "What if there's something in my trousers!" (There was, it was the label.)
My sleep-cycle is completely banjaxed, as well, often nodding off in the armchair in the early evening, which sometimes, but not always leads to the 3-4am wide-awake nonsense. The 3am wake-ups happen even if I go to bed at a 'normal' time, and they're not generally in response to any discernible trigger, it's like the 'toddler' thing again, where the small child wakes up in the middle of the night, and 'bing', they're wide awake, nothing wrong, just awake. What we're 'supposed' to do is either empty our minds before we go to sleep, through meditation, or list-making, or whatever other strategy people say works for them, or work on 'sleep hygiene', routines etc to make sure we're all calm and uncluttered before we go to sleep. Easier said than done when you're babysitting a brain-baby.
It would be absolutely ace if we could all put 'that' in the 'after-effects' corner, 'that' in the 'brain injury' corner, and 'that' in the 'this is just part of life corner', but it's virtually impossible to distinguish one from the other, in my experience, the whole lot ends up lumped together in this big old mess of 'now'. That sounds dismal, and I don't mean it to, what I'm trying to articulate, is that some of these things probably did happen 'before', it's just that we already have brain-space occupied with the healing/injury, so a lot of us noticed we were less patient, or more watchful. (Or, like me, an absolute ogre.)
Advice? Keep seeking advice... Make sure you are fed and rested, and try to be kind to yourself the body is a vehicle, when all is said and done, and none of us want ours to be the BMX that the child lobs on the floor outside the paper-shop.
Thanks for your view, just knowing other people have the same problems with sleep is a relief.
3am seems about the time I been awake from for the last few nights . Falling back to sleep afterwards has not happened yet.
Possibly because after 5 minutes of lying awake and not feeling sleepy I see I have being doing all the things I should not like reading, eating, making notes ,playing games on my tablet etc.
Without making notes and trying to break things down into logical reasoning on paper I find it impossible to work out why I feel as I do.
My mind shuts down if I try to understand as a whole what is wrong , it's hard to explain but if I am sitting in a chair with a headache feeling like doing nothing and I ask myself why do I feel like this, my eyes close and my mind instantly goes blank as if it doesn't want to think about it.
last night when I put sleep problems into Google and realised as well as my shift work and recovery I had a lot of other stress factors that we're probably affecting me, it gave me a reason for my fatigue that made sense.
And from that I have been able to think a lot more clearly about how to tackle things. Not got the energy today but I know I need to address and a lot of smaller issues and figure out a way to manage things better .
Probably in my nature as I have spent my life fixing broken machines and solving problems that I look for a logical way to fix myself.
Taking pills apart from vitamins I don't fancy as my brain is repairing things it might not like extra chemistry in the system .
Anyhows I feel a bit better and I am finding writing on here quite therapeutic
Good that you're feeling a bit better. Personally, I do the small-logical things as well, reverse-engineering things along the 'what is most likely to be the cause?' route. A lot of the brain-stuff is trial and error, and you'll find your own strategies, from a combination of other people's.
The 'stress factors'- people without brain injuries have the can't-go-to-sleep, or can't-stay-asleep issues as well, it's just that with ours, there's the combination of the still-repairing brain thrown in as well. I used to be really linear-logical, 'Can I fix it? No? Well leave it, then.', working on the issues I could address, and leaving the others to do as they pleased, the old 'no point in worrying about things beyond my control' thing. Now, with New, Improved Brain, I get a lot of irrational thoughts. Not scary-irrational, just ridiculous most of the time, and no amount of warm milk, or lavender candles, or counting sheep, or any of the rest of the stuff you're supposed to do when you can't sleep has a blind bit of effect on me, I end up getting up at 3am, or 4am, or whatever half-past-daft time my brain decides it's awake.
The obvious knock-on to that is being tired and irritable all day, less tolerance for frustration, and tolerance in general. By all means, internet research sleep strategies, and causes for poor sleep, you're already processing the fact that the surgery had some unexplained side-effects, and all the health concerns that go with the potential re-emergence of the cyst, that's plenty for anyone to deal with, never mind with a brain injury as well. With regard to vitamins, a broad-spectrum multi-vitamin should probably do the trick, but make sure it has vitamin D, you might be deficient in that due to working nights, and not getting as much exposure to daylight?
It's a basic equation Maz :- Brain injury + 0 = many residual issues.
Brain injury + holding down a job, concerns about further surgery, worrying about elderly parents, etc. = many residual issues + sleepless nights.
Lack of sleep over a long period can be devastating and you have my sympathy. For me the only solution is sedatives as I feel they're less harmful than dragging my body and brain around when half dead from exhaustion. I have sleeping meds and antidepressants which work well for me.
Alternatively, you might consider asking for a referral for counselling, where you can freely discuss the sources of your anxieties with a qualified therapist, and gradually learn to approach issues differently.
Often, simple prioritising can provide a more relaxed and clear headed approach to daily life. You're obviously very stressed Maz which is the no1 killer for sleep. I hope you find your own particular remedy ; sleep depravation is really rotten. Cat xx
I had several Volvos when I was married ; brilliant cars ! I've a Seat Ibiza now ; had it ten years & still looks & goes v.well.
Hope you'll stay around Kevin for some morale boosting at least. Remember that less than a year isn't sufficient time to adjust to brain-injury issues. And give yourself a pat on the back for your return to work after such a serious procedure. x
Pat on the back done but I'm not sure she appreciated being picked up.
Thanks for the advice , now that I am having a break from being the strong silent type I like having a bit of encouragement and morale boosting, sort of things that I not thought about until you mentioned and they are appreciated.
Pat on the back indeed ! Quite funny actually...........
It's a big problem for men, seeing illness as a weakness. And talking about it .............. UNTHINKABLE ! but it can be such a barrier to their wellbeing.
Listen, I have a brilliant family but this is where I come for encouragement and support..................always. x
Evening, quick note ...not related to sleep...but you mentioned work/wages/driving. wondered if you had made contact with remploy ?? they were great wrt those things and more...like introducing me to the community neuro rehab team......hadn't even heard of them before.....it was rehab team who came up with many more ideas about sleep , exercise and psychological effects of the cvst I suffered. worth a go ??
Hi I'm another one of the many non sleepers on the forum but things are improving very very slowly. It's taken month s but I finally have started getting possibly five hours in a row many nights each week. It's better than nothing. I've given inn and gone to the doctor for some sleeping tablets due to a couple of serious (and I mean serious) meltdowns last week, and I'm also heading back to work phased return. Life is complicated enough without having sleep deprivation thrown into the equation Good luck with your quest, there are a lot more people here with sleep problems, so you may get some more replies with ideas of how to manage. My life saver this far has been lining up a quietish easy listening programme on my tablet before bed each night. If i wake up. I usually allow myself a few minutes of 'trying to get back'. If that doesn't work then worrying usually kicks in. I allow myself one or two minor worries before reaching for the headphones (so as not to wake the sleeping hubby). Having the programme ready to play at the push of a button avoids the sitting up browsing the schedule action. Just reaching over and touching a button helps keep the room dark and causes minimum disruption. Occasionally it'll take two or three programs before I nod back off, but it's better than trying to stop the merry go round of disjointed thoughts and flashbacks and putting the world to rights. The iplayer radio also lets you download programs - so you can have plenty in reserve for really bad nights. I found that sitting up trying to read / browsing the net was disastrous, so I banned myself Hope you find a solution soon.
Thanks Eleanor, last night I took the night off work as I was so tired.My head was swimming , it felt like electrical waves of nerves were flowing across the top which was a new sensation for me.
I think it was an email from Saga yesterday that had a load of sleep tips including recommending apps that help.
The first one I tried I liked, called Calm and wanted to use it more as it was soothing, but it's $200 to buy out right , or $12 a month
Tried a couple of free ones ,the people's. voices were a bit grating to me but they did help a bit as my sleep extended 2 -3 hours last night.
Will have to root round and find one that has the right mix of quality and price.
Goodness - that's quite a cost. Perhaps try you-tube for ambient sounds and similar things or the free version of Spotify? You can download so many free things these days Keep going, you'll get there Im reaching the heady heights of five hours plus these days - don't know myself! Everything's different when you've had enough T sleep.
I don't sleep well either after suffering two concussions. Then when I do fall asleep it's when I should be up doing things. Kudos for going back to work. I went back and failed miserably. I can't think or remember things. I hope it improves. I feel for all that have sleep issues. I like to drink tea with chamomile and use chamomile rubs. Especially on the big toes. The brain reflexes travel to the toe and back up, so this help. Reflexology- it really works.
Thanks for the tip, the reflexology sounds good , if I had it I would probably be best for someone to do it who knew what they were doing then I could decide whether to put in the learning time.
I know people have alsorts of healing skill but I never delved into anything of the kind, if you gave me your foot to rub you would soon get the picture.
I learned it during my 27 plus years of dancing and performing on toe shoes. Google a picture of a dancer's feet sometimes. Some can be terrifying. I noticed when I injured my big toe it mad my head hurt and caused other symptoms, so I started studying Reflexology and I knew a chiropractor that knew a lot about it. I've been doing for the past five days again after not doing it in years. Last night a bomb could have exploded and I wouldn't have woken. I finally slept like a baby in the first time since my accidents. I listen to music as well and that helps. I don't dwell on my disabilities, but my abilities. I can't get an employer to work with me and let me work. I've had to apply for disability, but I don't want to. I know multiple languages, international law, and tons of insurance stuff and adjusted claims for companies all over the world. I don't know if you've had this problem, but do you feel labeled. Like some big flashing arrow above your head. I don't like the concussion and post- concussion stigma they have in any country especially the US it's not helpful for recovery. I'm a not a concussion or TBI I am a person that suffered an illness. I am not the illness. I am still a human being just because I have to approach things differently now. I think all of us would sleep better and lead more productive lives post concussions and head illnesses if people didn't cast that stigma and labeling upon us. I am all for embracing you ability and not letting your disability hold you back!
Hi ballet, thanks for the advice, if reflexology is good for you I think the least I can do is give it a go, you are an awesome lady to take the time to help others when your own problems have been so much more than a lot of people could comprehend.
Only a very small percentage of people have had a career like you combining ballet , the insurance work and learning languages , no surprise you think employers suck for not giving you a chance after your injuries.
I imagine the people who work in the insurance business as being not the most compassionate people on the planet, present company an exception but as a rule they size up people and there assets to see how much they can make from them and I guess are more interested in making money than staff welfare.
I think you would be great as a team leader in a 101 different situations from phone selling to manufacturing companies & beyond as your so motivated no would could fail to quit moaning about their job when they see what you have had to put up with and still come out fighting.
Yes, my mom calls me her tiny powerhouse. I think Katie Perry must have heard me when she sang " You're Going to Hear me Roar." I have taken a company all the way to the EEOC and the federal government in the US. I am not scared of nor ashamed to put up a fight! I hope you recover. I just got an interview offer, but my docs don't think I can work. I want to keep fighting. I'm old school if you don't use it you loose it. You know that brain atrophy is what dementia and Alzheimer's is. I'm not ready for brain atrophy. I've already reported that horrible company. They make me so angry. I can jump nine feet in the air! I can't right now because my brain can't be shook, but I know I will one day soon. Yes, I love ballet, law, and just knowing stuff.
My first name means chief and warrior (Kim) short for Kimberly. That's what you need is some more fight and tell your body what it's going to do for you! There is another herb that is good for sleep and not dangerous to the body. Once I remember I will post it here for you. What's the ironic part is the company I worked for is based in the UK and British owned. I worked out of an office in the US. What a joy it will be sorting that out. I just want my last paycheck and to be done with it.
Temeric is a spice that is highly recommended for brain symptoms and people recovering from brain surgery. You want to be careful though some herbs and spices can have an affect on your vascular system and cause blood to clot or thin and cause either blockage or bleeding. Consult at least a pharmacist at minimum before taking any of these. I've never had chamomile react to anything. The sensation in your head is the nerves they operated coming back and rejuvenating. I've had 5 head surgeries in my lifetime trust me I know. The electrical impulses are the nerves reconnecting and messaging each other. Also, check out a tens unit also known as electrical stimulation to help nerve pain. I hope this helps.
Hi Kim, like your reply, a nice mix of good advice and plain old say at as you see it wisdom and humour.
Timely for me as this week I had a new experience in my head and you if you don't mind me saying you seem well experienced in these matters.
Since it happened I think I have worked out why but am not sure whether to see my doctor or not in case he signs me off work or prescribes something with side effects.
I haven't slept much for a while and a couple of nights ago I was killing time before work when the top of my head started having a strange sensation, rather than a dull pressure feeling I often get when tired I started having what felt like big tingling waves of electrical impulses go across the top of my head. Would never of thought my body could create such a feeling . Afterwards I felt very tired and a little concerned, so didn't go to work just wanted sleep.
Now I think I had a some form of stress attack as I put my symptoms in Google and found that people under stress can have electric type feelings in their heads.
So that's another subject I am trying to do a crash course in understanding , weird how one part of the mind forces you to address things when another part is telling you don't worry about that .
Always thought I was good at avoiding stress, at work doing what's right ,trying my best ,helping others made a tough environment enjoyable. And mixing one day a week on a long MTB ride in the countryside with my photography hobby is a great de-stressor or was before my op.
Last night I had a longer sleep as I tried a relaxing app with rain sounds, liked the woods & car driving best. And am on day 2 of a learning meditation app , all a bit new concentrating on my breathing and clearing my mind but will stick with it and see.
I would to be on the safe side consult with your neurosurgeon/attending physician. I have had much anatomy and science as much as a doctor, but do not hold and MD in either the US or UK, so I just want to put that disclaimer out there. However, being the one of the first survivors of my type of tumor and being one that they saved my eye and vision I happen to know a lot about the brain through my own experience and education. Working in bodily injury litigation you learn a lot about brain trauma and surgery as well.
With that being said, you are correct that you're having "brain zaps" electrical impulses in your brain. Your nerves were cut around and need to reconnect, your brain needs to adjust post-op, and when the brain has been operated on it is form of trauma to it and even the cyst disrupted brain nerve function and chemicals. Because your sleep patterns are off and you feel so fatigued 8 months post-op you are most likely dealing with the chemical in the brain known as serotonin being off. This can cause anxiety, depression, weakness, moodiness, poor coping to stress, fatigue, quick exertion, and cognitive changes.
However, these misfires, impulses in the brain are naturally occurring after what you've been through and your history if they become to frequent or too strong and misfire too wrong, this can lead to seizures. Anyone that had had brain surgery, cyst, tumor, or brain ailment is at twice the risk of developing seizures or a seizure disorder including epilepsy.
This is why I would get the checked by a doctor. Neurologist diagnose, so it might be a good idea to get on involved. Neurosurgeons do brain surgery- there the cutters/surgeons. It would be to your best interest to get with a clinician that diagnoses, treats, and manages brain conditions- neurologist as apposed the guy/ gal that is trained to patch, repair, fix, and stitch. An EEG, EMG can test brain function and a new test involving MRI technology combined with EMG technology is becoming more readily available. If they find a glitch they can treat it with electrical stimulation- put a EKG pat like on that sends small electric impulses to the afflicted area to stimulate it to correct and heal, or radiofrequency procedures, or possibly the correct nerve medication.
We just don't want you to get brain damage in any parts from your impulses, start having seizures, or any other brain issues.
So here is your plan of action:
1) Get referral for neurologist- that won't be hard with your symptoms and complaints.
2) Get EEG, EMG- brain wave testing- neurologist will know to do this possibly MRI if you can have and don't have any clamps from brain surgery the magnet could pull off and cause a brain bleed.
3) You might benefit from physical therapy and a physical medicine specialist- neurology should help you with that.
4) Increase your brain's natural Serotonin levels by increasing Vitamin B- my neurologist uses Folinic Plus- it is available in US at Walgreens/ CVS/ internationally online. Also there is mix of inositol/magnesium you can put in a fruit smoothie nearing bedtime to help you sleep.- just Google smoothie recipes, increase Vitamin D with more exposure to sunlight- please where sun screen to prevent skin cancer, and you can take St. John Wart supplement to help control your Serotonin levels in your brain. This will help curve a lot of your symptoms. Start with the Folonic plus because it is a brain formulated supplement and has a lot of what you need before adding the St. John Wart.
I sincerely hopes this finds you well and helps.
Pat on the back for researching and helping yourself.
Wow ,saying that was a good reply was is an understatement. Makes sense what you say, my cyst was causing loss of vision as it was pressing on the optic nerve and resting on my pituitary gland. I still wonder how they got to it being where it was in the middle of my head. I have seen Serotonin tablets in the local health shop, quite expensive but worth a go?
I do think a neurologist would be good for aftercare so hopefully my doctor will now refer me.As I said in an earlier post my surgeons advice was well more surgery ain't going to cure your fatigue .
Think I am okay for the sunlight and I started taking magnesium supplement pills last week after reading it's good for me while recovering as using up loads more than usual and apparently stress uses it up faster. Already on 2 monthly MRI scans, with the NHS it's probably as good as it gets. Thanks again, great timing as I plan on seeing my doctor tomorrow. When I found out my cyst had come back I asked about that operation you had up the nose but got told I wasn't suitable, wished I had pushed for an explanation as I wouldn't want another craniotomy.
Went for my first walk in the woods for 2 weeks today and took some autumn photos, did me good.
Please check this link out. I'm the usual doctor challenger since I had the top docs in the country at Emory tell me that mine couldn't be done itra- nasal. Mine has been gone since 2007 and has never returned and they used a sphenoidal entry inta- nasal approach. Only a handful of surgeons do these operations and the best physicians that do this are not in the UK as far as I am concerned. They have this perfected in US at Emory, Mayo Clinic, Cleveland Clinic, John Hopkins, and another hospital in New York I can't think of right now. Have you tried a combonation of a Head and neck surgeon- ENT that is different than Neurosurgeon? The only place this is really perfected at out of the country is France and Germany. I don't know of a physician in the UK that this is their strong suit. Sometimes I hate to say it, doctors tell you that you're not a good candidate for something because they don't know how to perform it and this approach is more expensive, but safer for you. If you go another round the way you did before you may become unable to work cutting on all those and around those delicate nerves. Your going to be like me suffering through two unintentional blows to the head in auto accidents. Please, hear me out on this one. Also, your cyst returned because the way you had it removed has twice to three times higher incident rate of reoccurrence within the first year after surgery than a low 5% with the intra- nasal approach. Get a second opinion. Don't do the same failing operation twice. You could get a severe infection because the doctor is sawing through your skull removing the flap then the cyst and the replacing your flap usually in that operation or in a separate operation. All that contamination of tissue is this type of open operation vs minimally invasive. MRSA (methicillin resistant staphylococcus aureus)
is on the rise in conjunction with a super bug fungal infection in UK and US hospitals. Yes we get what you guys get because of travel and trade. Gamma Knife is not known to be successful with these cyst or radiation which is what Gamma Knife is. They have new application of Gamma Knife though for cyst and tumors. So still look into it. Named Gamma Knife because it uses x-ray gamma rays to actually cut and reduce the size of head pathology such as brain tumors and cyst.
Please, know that a failure 8 months in to keep the cyst away is not good. You can't just not treat it since your symptomatic. It's pressing on your nerves from some of your symptoms. Fatigue could be related to it's affect on the pituitary gland and it's hormone production. I have a doctor in the US that use to practice in the UK I will not disclosed your identity or anything of that nature, but will ask him if he knows a physician in your country that could help you get rid of this better. Some docs just don't know or how to use these technologies- they're only human.
Thanks again, you have addressed another concern of mine. I did think my cyst was in a perfect place for the nasal operation as I have copies of some of the mri scans and compared the positions.
It was only after the operation I found out my surgeon had not done the operation before and was barely 2 years qualified having done his training in Romania.
My aftercare was non existent, I only saw him again once after 8 months and that was after I put in a complaint.
I did want a second opinion because I am not even sure he showed my case to a specialist.
But when I looked into it , in the NHS system if you go down that route I got the impression that you have to use another hospital and they become responsible for your care.
It would mean long journeys and expensive to do so I am hoping that it stabilises.
A about 6 weeks ago I had 2 strange things happen which was the only reason I got to see my surgeon and was signed off work for a month.
Apart from going very fatigued, once my vision went what I call jigsaw vision, if I looked at a book page a circle in the middle would contain the letter's but all broken up but all around was normal and a few days later I was watching TV and in both eyes the central vision turned into swirling dark brown circles. Both incidents were pretty scary and lasted 10 - 15 minutes.
I had alsorts of tests at the general hospital and at the eye hospital they could find nothing at all wrong with my eyes.
Afterwards a feeling of pressure which had been building up behind my right eye went away,it was similar to how it felt before the operation.
When I asked my neurosurgeon he had no answers and I said could it not be my cyst has leaked out ,ie reached a size that was enough for a side to break where it was fenestrated and the liquid over my optic nerve caused the weird vision.
Came away with no answers he just said if it keeps being a problem I will do the craniotomy again a little more tricky as scar tissue but don't you worry about that.
When I think about it now I am not happy, think at the time I was so relieved I did not require an immediate operation that I was not thinking clear.
He said the cyst was back the same place and size as last time, yet last time I was booked in and operated on in 2 weeks from it being detected which made me think I was at risk of something.
Kev, I had my tumor behind my left eye. I've experienced the pressure behind my eye where it was located and the circles and the same exact visual disturbances. It's scary- were like identical twins just opposite sides. We're you evaluated by a neuro- ophthalmologist? Regular ophthalmologist don't know enough about this. Luckily mine was caught by my ophthalmologist during a routine pink eye visit. I felt like my eye was going to explode and for some reason my tear duck stop functioning properly with my tumor.
I had a special camera in my eye and I'm not sure what it is called. My eye was dilated.
Now, I am concerned. I am having the circles again post car accidents and the eye pain. I've had it off and on for two months now myself.
You didn't get a good surgeon and for that I'm sorry. I had weekly follow- up care for three years after my operation. Why would your surgery not work the first time? Why would you have all these problems? Please, don't be upset at me for saying this, but from your description which is excellent by the way, I don't think the surgeon got all of the original cyst out. You are having an archaic procedure in 2016 that is only still done if there is pressure to be relieved from the brain or brain bleed. Not your case. Even more and more brain surgery with the invent of Endoscopic, Inta- Nasal, and the Stealth Guided imaging system are being developed and broaden to do more cranial, sinus, brain, and ear surgeries. My heart goes out to you- it really does.
Why would you have tons of scare tissue unless he was poking around in there and why was he not using image guided equipment such as Stealth and there is another one now developed off of that?
I could fly to the UK and smack him on the noggin for you.
I don't know how they handle mal-practice and doctors failing to take care of patients in the UK in NHS, but you need to figure that out.
You probably signed for risks and stuff on the consent form that was not pointed out to you in bold letter or verbally explained to you by the neurosurgeon. This would bar you from suing for a risk covered under informed consent laws.
In the US this is how this would go down:
1) Failure of informed consent for not fully explaining treatment and risk with patient
2) Negligence for lack of post- op care and following.
3)Possible medical mistake, mal- practice for the cyst returning most likely from a surgeon mistake or failure to remove it all.
You have a real problem when you doctor avoids and evades simple medical questions regarding typical symptoms for your type of cyst or if it were a tumor. They cause same issues.
There has been a fluke no doubt.
My vision returned to such normal after my procedure I didn't need glasses for nine years after wearing them since 4. I am 30 now. I didn't have complications until after head trauma to location of original tumor and my neurologist noted this is the issue. I have a cervical herniated disc torn out from whiplash in accident moving on and off my ocular nerve. I pray no tumor back. The tumor I had has had rare reoccurrence after severe head trauma.
My point is I slept, felt and saw normal after my removal operation and head surgery.
You need a second opinion and please get this doctor out of neurosurgery or retrain the man before he hurts someone and has to live with that guilt. Romania had a national neurosurgery society that publishes in the medical community/ I am not sure how advance their techniques are. The US took their gymnastics Director from Romania and we've won a lot of Gold medals in woman gymnastics and became the country to beat. This doctor sounds inexperienced and that's my concern. He probably means well, but your suffering and by all means he should answer your questions- IT'S YOUR BODY AND YOUR RIGHT TO KNOW. IT'S NOW A PRIVLEDGE,BUT A RIGHT LEGALLY AND ETHICALLY. I wanted to stress that in CAPS.
All the choice being taken away from people when it comes to their healthcare rights and choices make me furious. I'm beyond mad. If he is that young I wonder if you have a resident or completed MD. I want you to be well and okay. Do what you got to do, but it is my sound personal and professional knowledge that says ditch the newbie doc. You never and I mean never want to be a doctors first patient at any procedure. I've possibly was the first or second with mine, but it was new and my doctor and helped invent some of it so he knew his technique well. To find the best doctors ask the nurses. Not the medical board, not all those stupid online doctor review sites that are silly. How long did you wait. I'd wait 10 hours for the doctor that would fix me and save my life- Wouldn't you. I care about quality and not quantity of how fast the docs see 'em and shove 'em out the door.
I hope my thoughts and reality on the subject aren't too harsh. My language professor always warned me I can be too blunt.
One other thing I looked at the link you posted on cysts, my cyst type they call a super arachnoid super cellar. Quite rare I think, not sure what they fill up with.
Read this link it's mentioning your operation you had, but then newer endoscopic techniques I am trying to point you too. Did you get a shunt put in because if you didn't this is why your fluid built back up and you're in a dangerous situation?
It's cerebrospinal fluid with collagen is what they fill up with. They due leak and cause alarming issues. Please, read this. Best explanation and break down I have found. If you have further questions you know where I'm at on here.
Hi Kim, glad I met you, if I tell you how they found my cyst you wouldn't believe it.
I was being seen by the eye hospital because I have glaucoma, my dad had it and I got it. Never really noticed any changes to my vision as I was screened early and put on eye drops at an early stage.
Last year I started getting a pain behind my right eye, it just felt pressurised and would water for no reason and my field of vision got suddenly worse.
My eye consultant kept changing my eye drops but the pressure in my right eye was really high about 10 points more than the left.
One time I went I saw a different consultant and he thought it might be something else rather than the glaucoma and sent me for an MRI scan.
This was September last year, meanwhile I saw my usual consultant again and he decided I needed a trabeculectomy operation to reduce the pressure in my eye and this was scheduled for just before Xmas.
On the day of the operation he phoned as I was setting off to say he had just looked at the MRI scans the other consultant had done in September and noticed a cyst pressing on my optic nerve so he was referring me to neurology.
Hi, Kev, I feel you on this. Why not look at it sooner. My diagnoses was made seamlessly by my ophthalmologist, but I had seen him since birth and he saw most of my family and was super sub- specialized and saw a wide variety of ailments being an air force physician before practicing on civilians.
My ENT had not found it on the CT Scan, so he didn't initially want to keep digging since I had had severe sinus disease that was always threatening my cranium and bones in my skull the infections were so bad.
Sinus disease got out of control by the age of 10 with a 104 fever and passing out in the middle of the school year in 4th grade. I never failed a grade I turned 10 in 4th because I wasn't allowed to start because of my December birthday when I was 5. My mom kept me in private day school until mandatory school began.
My sinus surgeon was just confused and frustrated, but my mom insisted that my illness was something wrong beyond my sinuses in 2007 and mom's know best and my doctor held on to this. They decided to use a new cross- sectional more 3-d dimensional CT scanner at the community hospital. The doctor's had taken such an interest and genuine care and concern for my case that they band together and bought the million dollar equipment for the hospital that would inevitably comet to save more lives than mine. This was after the dismay that the local go to research hospital system- EMORY- Google them sometime and see how bad my fate was when they couldn't do the operation.
My life was saved my head, neck, ENT surgeon and by a neurosurgeon by the name of Dr. Kumar- and Indian physician part trained in the US and part trained in India. I have to say I have mostly Indian physician trained in the UK, US and in India. They really dig for answer and fight for your life. I found this to be a consistent quality. Google healthcare in India sometimes and you'll see the disparity of care from national healthcare there. I feel the condition there in a lot of areas is what makes them such good doctors and fighters able to diagnose anything and operate under any conditions and be so successful.
I really feel if you ever want to live the rest of your life cured from this and well, you need different physician or find a better game plan with your current ones. I know they're human and make mistakes.
But the way you were treated is mistreatment and not as good as they could have done for you and the cyst coming back is not comforting at this point.
I wish I could give the surgeon I had to you for I know this would fix your problem. I wish I had become a surgeon. I have a surgeon in my life urging me to do that.
I found a blood clot after a fall to the ground of my grandfather's when the doctor missed it.
I found my own hernia when the doctor misses it. I actually found the shadow of my own tumor on the CT when everyone missed it and raised eyebrows and suspicion to dig deeper.
I saved my neighbor's life from internal bleeding symptoms from too strong a dosage of blood thinned. She's 89 and going strong. Walking and everything. ER missed it initially. Saved my neighbor from misdiagnosed broken leg and infection.
I guess by the end of reading this you wonder Why am I not a doctor myself? I thought I'd never be good at it, I was scared of loosing a patient, I am sometimes a little germ phobic, and too much blood does get to me at times.
My tumor was not a mystery for me for my great grandmother was paralyzed by the surgeon trying to remove hers at Grady hospital in Atlanta, a top rated trauma hospital, when she was around the age I had my tumor. They didn't have image guided techniques then, She died early at 50 and was wheelchair bound after her operation. The tumor could have contributed as well. She helped advance medical science. The would of been in the early - mid 1930s when the first sinus/ head endoscopic techniques were being explored and birthed in medicine. The minimally invasive laparoscope they do abdominal surgery with was being used in 1902 and would take 80 years of fined tuning to remove the first appendix this way.
See doctors should know minimally invasive techniques and you should be receiving quality, cutting edge care.
I don't know if you have the financial means or time, but sometimes you have to go outside your box. I've had to travel outside my state for care and I've don't it for friend's children.
I've spent some time and money. Had I not I wouldn't be sitting here talking to you and helping you. It is my intention to become a lawmaker within my government and give people better doctors and better access to care. Not fine them for not affording health insurance under our current Affordable Healthcare Act.
I was tempted to travel to Germany for my appendectomy in 2014, but I was too fragile and ill and I had a good surgeon. My operation was 50k US that would probably been no more than 26k in Germany. I had a rare form of chronic appendicitis misdiagnosed for years and trying to kill me. It's what leads to appendiceal cancer. This disease is so rare that it has a low survival rate and kills. They didn't find cancer cells in mine, but my surgeon advised it looked too close to him for comfort and he's been doing it right at 40years.
Every time ,I get sick it's investigated in the worse case scenario fashion because of this and the fact the removal of by tumor left an opening in my sinus that has been closing over the years, but is at risk for catching infections germs are so bad now and mutating.
My point to you is I've been misdiagnosed and under diagnoses that I've almost lost my life at least three times. We're not video game characters, we don't have 4,6,or 9 times to get it right- we only have one. One life to live and one chance to get it right. This is why there's prayer and God to seek wisdom from when were stumped and at our wits end.
I don't want you to feel I'm pushing my religion on you, but I know for a scientific fact that I am supernaturally alive and as well as I am from miracles and not all science. The textbook and science states so. But God had a better plan!
Hope the doctor goes well. Print out these techniques and ask the doc. Go in with a list of questions and solutions you want to know. Tell them you need a longer time slot such as a consult slot booked in 30-45 mins to 60 min intervals and not follow- up booked at 15-20 mins slots. This could be a lot of your problem doc to rushed. Get copies of all your own records and bring them with you. They never have my stuff to review before time because they health system failed to send it. Gather it and give it to the physicians nurse with your questions before your visit, so the doctor will have been studied up on your case and problem before you get there. Doctors appreciate this. GOOD LUCK- I'm cheering for you!
Hi Kim, The more you tell me and explain what you have been through the more I think and feel I am glad to of met you, really is a new experience for me to have a stranger give up their time to help me overcome my problems. Your awesome and a wonderful person to know.
I spent most of today gathering information and making a new plan of getting myself better inspired by the advice from you and others on this forum.
Getting a doctors appointment here if it is not an emergency takes a week or 2 of forward planning as they are so over subscribed these days. The best I could get today was a quick chat with a doctor who said he would get my doctor to phone me on Thursday for a chat, no chance of a sit down face to face appointment.
Wanting him to be prepared I printed off my 5 page summary of past - present and future treatments.
I have found experts at the endoscopic base of the skull brain surgery through the nose in the UK not to far away 125 miles ,neurosurgeon Nijaguna Mathad and ENT surgeon Salil Nair seem to be the best in the UK since 2007 at Southampton NHS hospital lots of success.
Read up on cranial fluid leaks and other side issues and gave reasons why the wait and see approach for my problems was not a good idea especially if it boiled down to the same surgeon doing another craniotomy on me only when my vision is suddenly impaired or worse.
Next I read up on the system in the NHS for requesting a certain hospital and consultant to be treated by. Turns out there is an established procedure and it is a legal right to request it.
All this and more I laid out in logical steps with all reasons why and then the specific information on who and where etc.
Put it all in an envelope and dropped it off the clinic for my doctor to read through prior to our phone call so that he will be prepped and ready to go. Fingers crossed he backs me, he is the most blunt speaking South African I have ever met so if he agrees I am in with half a chance.
Think all my years fixing machines lets me approach this in a logical natural way, well since you got my head in gear and my head out of me bum.
When you mentioned sinuses it reminded me of a problem I had 7 years ago and found a unique cure for. I went to Turkey for a holiday and prior my sinuses felt blocked I remember taking sinutab pills to try and clear them. Anyway as the plane was descending to land I got the most painful feeling in my right eye, thought it was going to split in half but obviously it didn't.
My eye settled down quite quick but my face felt sore and blocked around the sinus for the first 3 days of my holidays and then I decided to go scuba diving as I had never tried it before. When the boat was parked up and we were waiting a few of the guys started jumping off the top deck rails into the sea and I got egged on so I did a jump about 20 feet into the sea. Complete noob I didn't pinch my nose and hit the water hard as and went quite deep. The interesting bit is about 10 mins later I was on the lower deck dangling my feet in the sea and all this browny yellow liquid started pouring out of my nostrils, remember it pored then dribbled away for quite a while. Anyhow afterwards all the blocked pressure and sore feeling in my face just disappeared, it was great the rest of my holiday I was back to normal. All I could think afterwards was that the salty water shot up my nose with such force it flushed out my sinuses somehow. Better put a don't try this at home disclaimer but it definitely worked.
I get my logic from my grandfathers - one a machinist and mechanic, another a carpenter and fixed machinery then another in law enforcement and law school. I fix everything myself I'm just not as strong as I like I have tiny Barbie like features. Not helpful for real life stuff, maybe a beauty contest?
Since you've had brain surgery and eye issues, I don't recommend nasal irrigation for your sinuses at the moment, but when the doctor clears you this is an excellent way to help reduce allergies and sinus infection. You must always use distilled water - never tap unless boiled. Micro-organisms live in tap water and you'd never even drink it again if I told you. They can get past your blood to brain barrier if you wash tap water up your nose. The ocean/sea is great because it's naturally sterile. Be mindful to wear protective ear plugs and swimming gear and especially a helmet for anything that can damage your hear or brain post surgery. Once your brain has had surgery or sickness it's at higher risk of concussion and injury if it's struck or hit.
I dive in every year on my beach trips and my ENT actually recommended the family pool and this to clean them out until my tumor removal. I have to be a little more germ contentious now. Wear my swim cap and mask. I'm a diving and swimming diva despite my challenges and my asthma. My pulmonologist didn't think a gal with my breathing issues would have that great of a life , but my lungs are functioning at 99% plus, with my asthma being affected by these recent head traumas. I do good though. I push my physical limits with exercise.
We are so much alike, I am so glad I met a person I can relate to. I know this is not fun, painless, or something you want to be a twin about, but if we have to go through this head stuff might as well do it with a friend.
As I said, I worked for a UK based company twice in my life. You never know when you might see me in the UK. I have multiple business contacts and friends there. I was asked to relocate to the UK, but because I've spent hears getting my healthcare team right and my issues being so significant I have not be able to do this. My family is from England and my Great, great , great uncle a Duke that migrated to the US to help establish GA as a colony. For some reason my part of the family never returned to England. It's odd to think he would have known James Orglethorpe.
I won an award for my history thesis on this.
I am proud of you for seeking answers and taking a stands on your health. By you asking and educating your health professionals- you're opening their eyes to new technology and ways to help people.
I genuinely feel with the exception of some self absorbed jerks in medicine that doctors for the most part want to be the best and do the best for their patients and they genuinely care.
They guy wanted to give you another operation because that's all he knows to do for you I'm assuming. He was puzzled because he did what he knew to do and it failed. He's young to.
It alarmed me when you said he'd never done that operation before because he shouldn't be allowed to practice on you without you knowing not after, but prior to your operation
I'm cheering you on and your doing great. Don't self blame because it was ultimately the hospitals and health systems job to inform you about your doctor's capabilities and to protect you and give you a standard of care as a patient. Sometimes medicine takes the word practice out of context and a bit too far!
You found a great doctor that you mentioned and that's your guy. I had is profile from NHS and the neurological society and he works in conjunction with an ENT just like they'd done my surgery and I'm shunt free. I 'd wish you'd had him the first go around and though you might still had fatigue and some post - op pain that's normal, you wouldn't be as you are.
I really pray and hope he can help you.
This sounds very, very promising. My surgeon was also, of the similar background. Another thing you can do is ask people you know if they've had surgery with him or known anyone that has had surgery with him and speak to them about their own experience. Outcomes speak louder than profiles, accolades, and resumes. My trophies, awards, and stuff behind my name don't make my brain be able to apply analytical problem solving and information skills.
Thanks for presenting your problem on this forum. You've given me the ability to think in a productive manner again. I don't know why, but this is helping my memory and cognitive damage post concussion like never before. Giving, sharing, and aiding another human in need really is the best medicine.
We'll both get well! So glad to help you get on the right path. I almost didn't sign up and post here for I felt bad and worn out with my health. When I read your post I knew there was more than sleepless nights and my heart spoke to me to reach out and help you. God works in mysterious ways.
Thank You,
Kim
This is a great exchange and I can't add much! However I would suggest that over-thinking on all the new complexities in life after TBI is probably the actual cause of the stress. Because there are no clear answers to most of it and there is a lot of scope for self-pity and worry to lever their way in! This is where mindfulness can come in handy.
Re the not sleeping - again it is often this thinking that is the problem. I have solved this by having an earpiece attached to my bedside radio and held in place by a soft headband and whenever I am awake I listen to the BBC World Service/Radio 4/ 4Extra until I fall asleep (often when the earpiece slips and I am not awake enough to notice!). I have heard some super programmes this way and many focus on the problems people around the world are facing which make mine pale into insignificance. Or maybe music would do it for you.
My career was ended and I was the main earner, driver etc and now am in bed on oxygen in pain and battling debt. But I now see it as a change of life path which has given me far more time with my children/young people. I must admit that Happy Pills - the right one at the right dose which takes time to figure out from the GPs starting point - are an invaluable 'cushion' that facilitates this state of mind though...
Hi Caroline, it's good to hear you use the same 'sleeping pill' as me I consider the iplayer R4 & R4 xtra to be a huge luxury and I wish it had been available in Hopsital. I suggested to one of the nurses that some of the other bed bound patients might be able to relax if they had it. Funds don't permit of course , but I felt so sorry for people lying there all day with nothing to listen to and no visitors. I don't know what I'd have done without it once I got home - it's the most comforting thing in the middle of the night.
I've struggled with sleep since my injury. I have tried all sorts of things and am currently doing a bit better with a mixture of relaxation exercises before bed, sometimes with a sleeping tablet or antihistamine tablet when I'm desperate. I have also downloaded relaxation recordings from Darren Marks, there's a free on you can give a go first. I've also found yoga nidra useful too. A few drops of Cleary sage on my pillow help a bit I think.
Good ideas, I am looking for relaxation apps at the moment, I don't know Darren Marks but for me I find it more soothing to listen to a female voice at bedtime than a man.
To me it seems a better option than sleeping pills but time will tell
I vaguely remember the non sleeping time and having chats with rehab team about this and they reminded me of all the sleep hygiene things that I had forgotten - at risk of sounding like I am "teaching" I found that I needed reminding about - keeping bedroom for sleep only - no tv,reading, working etc - NO tv, computer,smartphone at least one hour before bedtime- fixing a bedtime and getting up time , trying not to nap - NO fitbit or anything of the kind- using earplugs and eye mask really helped - keep bedroom tidy, aired and smelling nice ( lavender oil meant to aid sleep) , warm bath and warm milky drink before bed , ensuring adequate exercise during the day - but not to get over tired...... were all suggested.
Early days were really sporadic sleep - but after a few months I was sleeping at least 12 hours - more stimulus during the day ? - and had to treat myself like a baby ( I am mother of two young men ) - pushing my bedtime back by 15 mins for a week because a 7 pm bedtime was not leaving me any time but I needed it early on. This along with switching from Tramadol early on to amitriptyline really helped .
My sleep issue these days is the Other way round .... I'd happily sleep 12 hours plus given the option - but have to work/ have a life too.
Hope some/any of that may be useful - and do try remploy - they helped me get information for my employers and helped organise taxis to/from work in the period I couldn't drive.
Mrs Moo how do you do, my mind is open to all suggestions, I have gone from no idea to lots of ideas in a few days of joining this group so thanks for your input.
Must say you women come out with things I wouldn't of thought of , why it is I could stay in a hotel room that smells lovely but not think for a few pence I could recreate it for myself when I get home is a mystery. I think it goes beyond keeping a bedroom all nice,clean and tidy , left to my own devices I would love to create a bedroom from scratch that was my oasis of calm.
When it was early days after my operation the morphine based pain relief I had did not help some nights so on a couple of occasions I took that amitriptyline as it said it was good for nerves.
It certainly knocked me out but it felt so powerful I never touched it again, made me woozy the following day even.
Yep, my amitriptyline much better than the tramadol....I have to take mine around 7.15/7.30 to avoid the drowsiness next day....def not after 8.30.
Would avoid tramadol if at all possible in the future....very addictive and has bad unwanted side effects for many people. I had to go through withdrawal which was tough but worth it
Hi Caroline, thanks for your view of things, maybe on some level they apply not sure. Self pity is definitely not a trait I have, too many people much worse off than me for that and rather than over think things I will for example spend an hour or 2 on my budget , save it and only think about it again if I see a bargain I would normally of bought and can't now.
In a way it's the same with getting better, the professionals use the nobody knows or you may or may not improve with time type of language with me so I have not thought about my problem's in the sense what's wrong with me I should be better now , only that I wish I was.
Writing on here and getting other people's view has helped, as I know if other people can cope and help others then I should be able to & putting things into words makes me think more.
A lack of support and understanding at home I think has made me clam up for a while now - which has caused stress on top of the health issues stress. And now I have become stress aware I see how it has been making some of my symptoms like fatigue and headaches worse.
Not that I think people should be psychic , but have you ever felt like saying to your partner - stop asking me to do things, you should know I would if I could but I am tired. With me it reached the point I can't be bothered to explain things anymore and just want to be on my own so I can get some peace and quiet.
Sure I will manage somehow, like someone else said the world looks different when you are rested and getting your sleep.
I have just been without my telephone line/internet for two days and it has shown me how useful they are. Interestingly it was connecting with friends and family and looking things up on the web that were the things I missed most! I did get on with doing other things though and could still watch Strictly and Planet Earth with the family! I agree that this forum is very useful to air one's thoughts - re getting messages across I have often wondered whether saying it in the best way at a good time is the vital thing - we tend to explode into it with exasperation and annoyance and it is that which triggers the hostile reaction.
I am reading 'Over My Head' by Claudia L Osborn and would recommend it to you!
Hi Caroline, the book does sound like something I would read, it has great reviews as well, not in the Amazon Kindle library so it would mean reading a book with real pages, something I not done for about 5 years , will check the local library online, might be able to track down a free copy. Cheers
Hi Kev, I am on the other side of the fence, the wife of a BI man. It is very difficult to see the person you knew change into someone different. This is not to denigrate the difficulties facing you all, I know they are huge, but sometimes the sheer frustration of trying to cope with your partner's problems whilst still trying to keep life as normal as possible, overcomes common sense for us family members. Has your partner read all the literature available from Headway which will explain a great deal to her. You might find if she comes onto this site and reads people's stories, she may get a clearer understanding of how very difficult it is for you all to try to lead a normal life with all the problems of the brain injury too. I know it has opened my eyes enormously and I understand my husband so much more now than I ever did before finding this site.
Very best wishes for the future. Do tell your wife to contact me if she wants to chat with someone who understands.
Hi Jan, that's kind of you to offer advice like that. I am pretty sure my wife has not looked further than how I look and does not understand the tiredness & frustrating time I have had since my operation. Yesterday afternoon my head was aching and I just wanted peace and quiet but she insisted on vacuuming the house ' it's what housewives do was her reply when I asked her to do it another time and she just carries on like it's me being awkward, whereas it's not , I work in a compulsory ear protection area at work and am used to noise a lot worse than a vacuum cleaner. I feel my self getting stressed by actions like this which pre-op I wouldn't have.
Think I will try talking to her first, wouldn't fancy letting her loose on here as I can't be bothered with the inevitable 20 questions and more that would follow. She has a habit of never endingly saying why? until I reach a point where I say I don't ****ing know look it up yourself if your so interested. Believe me I am an incredibly patient and not easily stressed type of guy and never swear or treat women anything but like a gentleman but she is unlike anyone else I know.
Never thought she would get a mention when I came on to this group, felt good to get a little moan off my chest.
Anyway Jan I will give your kind offer some thought and let you know, maybe I have changed a bit, I do feel a bit grumpy some days.
mazvol i dont have your problems mate, but i have a noise problem and althought i take medication for my aggression, it does always work, but ive taken up mindfulness, the exercises are so relaxing and you can send yourself off to sleep!!!
Hi Steve, good idea, only the last 2 days I have been trying out meditation apps to relieve stress, anxiety, sleep and also some of the relaxation apps. Sure once I find one that I really like it will be a big boost as the ones so far are promising and the world sure seems different when you sleep well rather than start the day in an achey fog.
I had a craniotomy 10 years ago, and can completely relate to the lack of sleep, and the 3am wake up, and also the going back to the toddler days of sleeping for a couple of hours and then bing wide awake. At the time I felt so isolated, while the rest of the world was asleep here I was on my own in the night, alone. At the time I started watching LOST the tv drama and found that buying the box sets and after watching a couple of episodes at 3am I was then ready for bed again, cant remember how long this went on for after operation, but things did get back to normal eventually. So there is hope your sleep pattern will get somewhat back to normal.
I think the worst thing was the not being able to walk or go outside in the fresh air for around 8 weeks, apparently the brain does not like to be exposed to air, hence all the shuffling about I did at this time, (which I might add I was never informed about). And also the fatigue and feeling very burned out after the simplest of things. Never mind not having the capacity to have a conversation, I just couldn't think that straight and my brain's response time to any question's asked was zero.
For me I have also been left with no sense of smell or taste (the surgeon seems to think this nerve was accidently severed with the procedure, which was very frustrating at the time), its something I have had to get used to and I will still go for the chocolate biscuits in the cupboard and not the plain ones, and will never eat a Brussel Sprout!!, my brain is not that daft!!
Its a very major operation you have just had, and my advise is to go easy on yourself, and try to do what you can when you can and not push yourself too hard at the moment, its early days and you will feel something like the old you soon, but it cant be rushed.
Hi Jules, always nice to hear from someone else who has had his stapled together.
Good advice, I probably did push it a bit hard at first, but I was told walking was the best exercise so was out in the fresh after a couple of weeks and could walk a fair distance by 8 weeks.
I thought I was making progress inspite of crashing when I over did it , like you do when you have no experience and no aftercare.
I think my present problems are because I have a very demanding job physically and mentally and it's night shift.
Because I am conditioned to 12 hour shifts I felt going back and doing 8 or 10 hour shifts was part time hours but 4 times I have burnt out after 4 weeks and needed a week or 2 sick leave.
So I am having a rethink and have permission to take extra breaks now and am going to stick on 8 hours for a while. I work 3 on and 3 off continous so not bad.
But my cyst has come back same size and place as before so think that is effecting my energy as I am not as good now as in the summer.
My taste is really bad in the morning but improves and I am thinking it may be down to cranial fluid leak from my fenestrated cyst its base of brain, optic nerve and pituitary gland area and I get pressure build ups that come and go.
Neurosurgeon is no use and gives no advice which is why in process of transferring care to a different hospital.
If the cyst had not come back so soon I like to think I would be feeling better it is hard to say.
My sleep has improved a lot this week , tried some Sainsbury herbal sleep pill, meditation sleep apps and put lavender oil on my pillow, amazed myself and advice from people on here was a major help and factor.
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Quite funny actually...........
I'm another one of the many non sleepers on the forum but things are improving very very slowly. It's taken month s but I finally have started getting possibly five hours in a row many nights each week. It's better than nothing. I've given inn and gone to the doctor for some sleeping tablets due to a couple of serious (and I mean serious) meltdowns last week, and I'm also heading back to work phased return. Life is complicated enough without having sleep deprivation thrown into the equation 
Exhausted 
Hi, to those of you who have had a clipping for an unruptured aneurysm - how do you feel 12 months on? Do you have any symptoms or worries?
Having trouble coming to psychological terms with a brain injury. How do you do it ?
Hope after a TBI
