Cerebellum Surgery Side Effects

I am always grateful that my surgeon, Tim Jones, did an amazing job and that I didn’t have any major side effects from my somewhat risky brain surgery - where one wrong cut and my tumour was likely to severely bleed, so much so I could bleed to death. I didn’t even need the ‘probable’ blood transfusion, and leaving hospital just 48 hours after the end of surgery is testament to his skill.  

I was warned before surgery that I would get side effects, it was made perfectly clear that my head would never feel the same again and so every day the symptoms remind me I am alive and to be grateful for that.

(The symptoms I have in my head I wrote about previously here.)

Here is a list of the other things I struggle with 21 months after my craniotomy:

 

• I still often feel uncoordinated 

I drop things easily, cannot easily turn my wrists whilst holding items (e.g. Turning a key in a door while holding a bag is not easy), typing or writing can be a physical struggle to get the correct letters typed in order or written in the right shape. I still struggle a bit when I paint (and I am not doing anything detailed) … a couple of weeks ago I managed to tip a whole bottle of liquid acrylic ink right in my lap. As I stood up it ran down my legs all over the floor! Don’t ask me to catch anything - I will probably break it!  

• I still feel I easily lose my balance 

  I cannot wear thin or high heels at all as I literally feel I will tip over, but even when I am wearing flat canvas shoes I can wobble if I do something too quickly, I always have to keep one foot firmly on the ground. I feel I wobble and stagger to the side if I open a heavy door, or I get bumped into. I cannot easily or quickly correct myself. I often still feel (and think) I look slightly drunk! Although my husband has told me I don’t look wobbly when I walk anymore.

• I know I often muddle words when I speak! 

  I can say a similar word instead of the one I mean. Left instead of right, (Sorry if I ever gave you directions…)   or sold instead of told. Sometimes I realise and sometimes I don’t. I say phrases that are totally wrong- such as calling Spaghetti Bolognaise, ‘Yorkshire Pudding’; or ‘can you put it in the dishwasher’ instead of ‘in the dryer.’ Or some strange response where I say something like ‘I need to water the plant as it’s dead’ when what I meant to say was ‘I need to water the plant as it’s dry’- just that my thought process has jumped a step ahead in what the consequences may be. (This might be ok with plants, but not always as good with people..!)

• I often type or write words incorrectly  

  I write ‘on’ not ‘of’, ‘wesbite’ not ‘website’, repeat words and not notice at first, or add words in the wrong place in an already part written sentence, or completely miss words out. I cannot spell anywhere near as well as I could beforehand, I often have to phonetically sound a word out and even with spell check still end up Googling spellings and meanings. I often know there is a word that describes what I mean, I just have to explore words similar to it in my head to find it! Even when thinking of names or words I once easily knew I can end up thinking of similarly linked items or words or names starting with the same letter to get there.

• I cannot multitask.  

  If I am listening to music and talking, I end up saying a word I heard in the song instead of the word I wanted. If my son asks me even a simple spelling when I am watching or doing something, I have to stop before I can think correctly enough to spell it. When I try doing both, he laughs as I totally miss letters out or say the wrong ones! I can’t cook a complicated meal or do anything where I have to think and also hold a conversation. I know I saw a cognitive test where you had to list alternate types of objects, such as a fruit, then a type of job, then another fruit. I start ok, but then after 4 or so or each I seem to just stop, I cannot remember which words I have used and somehow switching back and forth from the type’s just means I go blank.

• I forget things  

  Words, spellings, if i have told someone something previously (I often now ask ‘did I tell you?’ first), details of things, to call someone I need to, things I need to do, leaving the hot plate on… (and then going out!) 

• My eyes can feel unfocused and blurry close up.   

  When I wake it sometimes takes me a while to feel I can see properly. I have been told by my neurosurgeon that any eye problems are not related to my tumour, and 2 different opticians can find no problems but I still feel my eyes are a bit like they were before surgery- I assume from when the brain fluid was building up and causing issues? (As tumour was in cerebellum) and I do wonder if this caused some kind of eye damage? But it also could just be getting older?! I was 42 when I had surgery and opticians all seem to say it’s in your 40's when the eyes often start to  deteriorate.

• Bad Days. 

  Some days I wake up and shower yet even in this short time I know it will be a tough day. I don’t feel fully ‘with it’ in a similar way to when you have a bad cold and feel groggy. (I think it’s similar to being hung over, but I haven’t drunk alcohol since I was 18 so can’t really be sure.) Then I constantly drop things, leave taps on slightly, and struggle with my speech more- yet other days I am almost completely unaware of anything being wrong and feel organised and productive. Thankfully these bad days have decreased quite a lot since surgery.

• Hormones. 

  I have also realised everything above is worse the week leading up to my period- for a while it scared me that the tumour was coming back as I would feel very slightly drunk again (this was my main sign of the tumour and so even a wobble scares me) Then I realised it happened each month and the symptoms went off in between! (I also had severe headaches with my periods prior to surgery -although the surgeon said it was not a hormone receptive tumour, but it was probably just as my body was 'lowered' at this time.)

• Cold weather also seems to cause similar worsening of symptoms 

  I have to keep my head covered or I feel wobbly again (Although this was something that also used to happen when I walked my kids to school 15 odd years ago- I wonder if this is just how I was, or that it was there causing minor issues 15 years ago?)

• Then sometimes I am just totally exhausted.  

  I could happily spend the day in bed and even the thought of putting the washing on the line is enough, and cooking dinner where I have to coordinate it too, will have me in tears of exhaustion. Sometimes if I have done too much this can last several days in a row. 
  

Although within the last year, I have found online others who had a Hemangioblastoma, most of them also in the cerebellum. We all seem to say similar things, both from what happened to us before finding out, to the surgery and the after effects since. Some have had far worse symptoms than me, and constant pain or damage, and some a few less than I have written above, but it seems most of us are very similar.

I was told most of the recovery would be within 2 years of surgery but I also know the brain can still heal, albeit at a slower rate, after this time. I am keeping up the supplements that I feel will support this. As well as listening to my body so I know when to stop, relax or push myself on.

.

Did my dog smell my tumour?

My dog is a short haired border collie called Enzo, he is super intelligent as well as being amazingly responsive to moods of humans- if we laugh, or even chuckle he starts jumping; if I am sad, or shed a silent tear he comes up and nudges under my arm so I am almost forced to stroke or hug him; if anyone is angry or raises their voice he cowers with his head bowed in the corner of a room. 

Sometimes no matter what you say he will want to sit on your lap just for a minute, just enough for you to hold him.

For several years, almost from the time we got him as a 13 weeks old puppy he had on and off issues with his coat, he would bite his lower back and cause sore scabby patches, we thought it was an allergy to fleas- but we had got rid of them, made sure he didn’t eat any food with wheat and even tried avoiding fish and other foods in turn to see if that aggravated it. But it never made any sense, he ate raw food, didn’t eat kibble or other junk, hasn’t ever had any chemicals on him, but nor any difference … his coat still looked patchy and bald at times where he had bitten the fur so much.

But over the last year his coat is getting better and better, he now looks constantly glossy and healthy and there are no bald patches or signs where he has bitten his back. 

When I was walking him today another dog walker (who I have not seen for ages) commented that he looked really healthy now and the bald patch had totally gone- had we done anything? The reply that instantaneously came out of my mouth was:

 “Not really no, but I wonder if he is better now that I am?” 

to which she answered, “Yes you hear of animals who are ill when their owners are, and that they can even pick up on cancers etc.”

Then while I was standing in the middle of the park thinking about her comment, I suddenly realised that Enzo has stopped sniffing behind my ear… oh wow! 

Could he previously smell or sense my tumour? 


He is has always been a ‘nosey’ dog- everyone who enters the house or even knocks on the door gets their bum sniffed!  

But he always used to smell behind my right ear. 
Almost daily. 

He used to all but climb up where I was sitting and try and smell me, so in the end I started to lean my head down and let him sniff behind my ear and it seemed to satisfy him. I assumed it was as he could smell ‘me’ somehow by doing this in the same way dogs smell each other, and my ear was a good place to smell ‘me’. 

Although I had told Dave to let him try smelling his ears too, and yet Enzo didn’t seem to want to. It was always behind my right ear, he would give it a few strong sniffs and it seemed to satisfy him and he would go.

My tumour was all but behind my right ear- was he somehow checking each day to see if I was ok? 

Could this have been making him stressed and his coat come up in some stress type allergy?

Then I remembered when I came back after my surgery to remove the tumour (I had been away for 4 days in hospital) he came over to the sofa to sheepishly to sniff me and say hello and he just wanted to smell where my surgery was. We obviously kept him far enough away from the area, but I knew he needed to smell me too, so he sniffed and sniffed and then went to sit down. Like he knew I’d said “hello” and that “I was pleased to see him too, but I couldn’t do much for now.” I wondered back then what he could smell from the surgery and that somehow he knew I was delicate.

He didn’t hassle me for his daily walk, and when at about 3 months after surgery I started to feel I could walk him again (as I had just about got my strength back to hold him on a lead, as well as do one small lap of the park.) When I did, he seemed to be understanding that he couldn’t pull when on the lead or wander off when he was off it– as otherwise I wouldn’t be going to take him out.

But in these few seconds at the park -while all these thoughts instantly whirled round my head and simultaneously made perfect sense, I realised for ages now he hasn’t sniffed behind my ear!

I know I had still been putting my head down for him to smell ‘me’, but he hasn’t wanted to anymore… why did I not realise this before?!

Did my dog know I had a tumour and also know when it had gone? 
No wonder they say border collies are an intelligent breed! 

Anxiety, Anger and Judgment

Over the last few weeks I have seen at least 4 different posts from friends on Facebook (some have been shared posts) about people acting ‘badly’ and how angry, upset, insulted or hurt the ‘victim’ was by their various actions and that they, and others, decide how awful, rude, bad, nasty, chavvy - even evil - the perpetrator was.

Yes I do realise that some actions hurt quite a lot, a huge amount at times, some are most certainly not necessary, but is the person who committed the ‘crime’ really always bad or evil? What happens if they are a ‘victim’ too? Is there a reason they are behaving in this way?

I know in my past I had severe anxiety, and I had many times when I had hit my mental limit. 

Where I cracked… but I didn’t crack and break down crying, as many would expect from anxiety. I cracked screaming, shouting, hitting and swearing, wanting to take my anger out on the whole world in the vain attempt to get someone to listen and understand. But they never did. All they could see was a chavvy, swearing, and stroppy redhead!

A few years ago I was accused of being angry, rude, stroppy and horrid when I commented on something hateful a person I knew had said online, she was negatively categorizing a whole group of people, and I was trying to get her to be a bit more kind and compassionate and less hate filled. 

But she had seen me at my worst several years before this and rudely queried how I dare judge her as I had been far worse. I tried to vaguely justify my behaviour in explaining I could not cope with my anxiety, I was getting angry at the situation and not targeting a ‘minority’, but she didn’t want to know and said I could never judge her. 

It hurt like hell hearing this, I knew the situation she was talking about and I had been in such an emotionally raw and low point that I flipped, my anxiety going through the roof- yet no one had noticed at the time. They had all been too busy having a ‘good time’ and drinking alcohol. They just saw anger and hate. I cried for days after I was told that this was what she thought of me. 

I had to forgive myself quite a lot too. Try to heal my past.

But I realised then - most people don’t ever know, or seem to care, what others are going through? 

Mainstream media posts photos of kids who have been bombed and as we cannot easily stop it we switch off, become immune to violence. Soldiers from our country are good, yet those from others are bad- even if we are in THEIR country killing them!

Pictures of people who have hit or hurt others are not shown that they were defending themselves, simply imply we need to catch the ‘bad guy’. 

Social media is even worse- you see huge amount of shares from a photo of someone who looks well sitting in a disabled seat topped with some rude comment about them, with thousands of comments calling them scum. But do we know if this is really the case? 

Could they have an invisible or mental illness and if anyone knew the details would agree they are totally justified in doing what they did? 

Yet their face is plastered all over our screens, hate spewing everywhere. People post pictures of ‘ugly’ people, laughing that they could date a friend with the same name - but how would you feel if that was you or your child being ridiculed and insulted? If one day you were in a massive accident and were lucky to survive, but your face was severely damaged, how would you feel when people kept laughing? 

People seem to have no thought for what others feel. 

Media teaches us that this is OK. 

It’s not.

People who have judged me had no idea what I was going through. No one seems to know or care why a person has an outburst at another. Maybe the innocent old lady has just verbally attacked them? Or the polite mum has just insulted their parenting? Yes maybe they should have ignored it, walked away calmly, but if it is someone’s final straw then people can, and do, flip. 

I remember years ago going out to a market not long after my boyfriend at that time had drowned and someone told me to “smile and cheer up, it can’t be that bad” I am sure he was just trying to be kind but all I silently thought was to tell him to ‘ Yes it is that bad and fuck right off.’ This sudden death was when my anxiety started, I was struggling to even be there-shopping, continuing as normal, deal with my grief. I didn't need his comment, if another had said it I probably would have retaliated even if it was someone not meaning to be hurtful. 

Do others know or care if the person is coping with severe anxiety? 
Or is dealing with a partner on drugs or who has just beaten them up this morning? 
If their child has a severe learning issue or disability that they cannot cope with alone? 
Or if they can’t pay this week’s rent and they and their family might be made homeless? 
That they have been living on beans on toast all week - so they have enough money to feed their children. 
Or have just found out they have cancer.
Or a brain tumour that affects their personality…

Which also hurts…

I have seen far too many stories from people with brain tumours (some who cannot have surgery and some after they have) and how even their family and friends sometimes accuse them of being lazy, or angry, or forgetful, or making their symptoms up, or all but calling them downright useless.  

Those with the tumour still inside them and inoperable know they have an invader in their skull and they cannot control it or their actions. Yet somehow the ‘victim’ of their action thinks they should be able to. 

If someone was given a drug to make them sleepy, you couldn’t expect them to keep awake just as you thought it was wrong to sleep right now, nor could they even if they wanted to. So why don’t people see that this person cannot control other things either? Many have to take drugs with side effects, yet again these side effects are ignored. Something you are supposed to silently put up with. 

The expression ‘It’s all in your head’ really is accurate, and yet most people imply it is only the imaginary version.

I have been pushed a couple of times by people who probably assumed I was drunk - once before and once after my brain surgery. Both times I wobbled but managed to stop myself falling. Judging without knowing any facts. 

I have been told I look normal and really well - at times when I could barely manage to go out, and when I did I came back exhausted and needed my bed, as well as for the whole of the next day. But should I have to tell a stranger my story when they glare at me for sitting down on a train, or wobble into them at a bar? 

Thankfully I rarely use public transport but I don’t think many would realise that even the action of walking to a bus stop can be exhausting for many that seemingly look well on the outside. I’m not saying it’s your fault for thinking that, after all we have to judge everything by our external circumstances- but please when you do, re-question your judgement.

Even doctors can get it wrong. I know the registrar doctor who first saw me when I got admitted to the neurosurgery ward before my operation - as an emergency admission from A&E (due to fluid on my brain) had seen my scan before she saw me, so when she introduced herself she expressed her surprise that I looked as well as I did as:

 she wasn’t expecting that from the my scan images! 
(Albeit this comment was also slightly terrifying!) 

If doctors cannot always tell how well someone is by looking, when they deal with these cases every day, then most other people won’t be able to either.

Although I still feel that a brain tumour (or any other physical illness) is a valid excuse in most peoples’ eyes… I am not sure if a mental illness is taken the same way? They are just seemingly rude, or stupid, or angry… or evil, and need to control themselves.  

(See my previous post here on brain surgery being more justified than anxiety)

Plus with the physical symptoms - I know I am not the same as I was before I had surgery. I feel I have far less ‘damage’ than many brain tumour surgery survivors have, but I still have damage. Some days I can hardly notice anything, but others I feel like I am really struggling and others must just think I am a drunk saying the wrong words and wobbling a little too much…

But then I also think that I was possibly suffering from this tumour growing in my head for several years before I even knew a thing. I have been looking into the cerebellum and its functions, and even on the basic Wikipedia page it says this:

“They reported that patients with injury isolated to the cerebellum may demonstrate distractibility, hyperactivity, impulsiveness, disinhibition, anxiety, ritualistic and stereotypical behaviors, illogical thought and lack of empathy, aggression, irritability, ruminative and obsessive behaviors, dysphoria and depression, tactile defensiveness and sensory overload, apathy, childlike behavior, and inability to comprehend social boundaries and assign ulterior motives.”

“the vermis of the cerebellum is responsible for emotional regulation.”

“It has been suggested that lesions in the cerebellum may be responsible for certain characteristics of psychiatric disorders, such as schizophrenia, autism, depression, bipolar disorder, attention deficit hyperactivity disorder (ADHD), developmental dyslexia”

So could some of the reason I suffered with a few of these issues purely have been from the tumour and the extra fluid it was producing inside my skull? 

Did it cause more fluid when I was stressed and so I had a double whammy effect of the anxiety and impulsiveness being an actual effect from the tumour, and then getting more anxious because of that? How long could the tumour have been there? It seems that Hemangioblastoma are often there for years, even decades, before they are found. The genetics team I spoke to said it could possibly have been there from birth - a defect.

Could this have been the reason that I had flipped in the past? 
Would people then justify a brain tumour as an excusable cause but not anxiety? 
Or would some people not even class a brain tumour as justified- as I should have somehow controlled and overridden it? 
Maybe if I drugged myself it would be OK? 
But then would alcohol and smoking have been accepted? As many people seem to sedate themselves with legal drugs in this way… 
Would cannabis or illegal drugs be alright? 
Or would it only have to be prescription medication? 
In fact is choosing not to take prescription medicine or drinking to calm yourself down also seen as irresponsible? 
Like you are not doing anything about it?

Before we knew about my brain tumour, Dave often used to say I acted like I was bipolar, there was ‘angry Jo’ and ‘happy Jo’, as my personality changed totally. I know I feel a totally different person since surgery, I kept saying after that “they had removed my negative chip” along with the tumour! But was it my fault I acted as I did?

And finally… when someone is acting angrily, they probably don’t have a brain tumour, they may well not have anxiety, but I can almost guarantee that they are not happy. 

People don’t upset another when they are in a good place.

Medical Records - Lost for a Reason?

So yesterday I received this reply from Giggs Hill / Glenlyn Medical Centre…

I don’t know whether to laugh or cry?! Although I have actually done both… with a little added sarcasm…

OK so I got the Freedom of Information and Data Protection Acts wrong- although it is not clear on the FOI .gov page that this is not used for applying for your personal health records- as it says you can apply for health information with FOI. I am not a legal expert, 

but I do know that when I asked for my health records last year and for Glenlyn to include the ‘Significant Events Analysis Meeting’ (SEAM) about my case, I got my records back but the SEAM part was ignored. 

Several phone calls and months later and still we were ignored- so I decided the only way I could get this information would be to request it formally. I chose the wrong one, but I have a, sort of, reply…

Deep breath…

So… one part is- Glenlyn have taken ‘advice’. I assume this means legal advice as to what and how they can provide information. But I don’t know. Glad to know they can afford it when they cannot even afford to refund me back the private fees I incurred when their staff messed up…

Next- they say the letter I had last year was an outline of this meeting… yeah right, the letter was about as useful as saying the outline of a brief has the full information on it! 

The only Doctor this letter said anything specific about was the first Dr, who I agree did what was “appropriate”- I totally understand ENT issues are far more likely cause of dizziness than a brain tumour! Plus she did also say to come back (which I did) once I had all the test results if the dizziness continued and they would pursue the next step.

On this supposed SEAM  letter it says: 

“A Significant Event Analysis Meeting like this is a standard medical way to learn from events where there have been negative outcomes or a patient has concerns regarding their care. Involved parties are encouraged to consider both things that went well and those that could have been done better. We have looked back through both your complaint letters at your clinical records, investigation results and the specialist letters. The doctors have openly reflected on their notes and decision making in the light of your subsequent diagnosis.

Unanimously we are very sorry that you and your family are having to endure this condition and the treatment associated with it. We acknowledge that you most likely already had the Hemangioblastoma to some degree when you first presented. We would have liked to have reached the diagnosis sooner in the hope that this might have limited the impact on you and we are sorry this did not happen”

Neither of the comments about Dr Vo or Dr Milne say anything specific as to what Glenlyn’s findings were about them… 

do they really think I believe this was the ONLY thing they recorded about this Significant Events Analysis Meeting? Really? Even though my letter was written 19 days after the meeting, they remembered it all? Wow! I want some of those memory pills… 

Also when I have been  re reading these letters again, I have now seen some contradictions and comments that ‘incriminate’ the doctors far more that I realised or wrote about in my first letters to either the GP surgery or the health ombudsman. Brain surgery definitely takes its time to heal from, and it seems no one cares one bit about supporting me in my complaint. 

Plus they apparently failed to complete a report into what they said… how very convenient! The most they can probably now get is fined a few £ for not following the correct procedure- but who will care? Will the General Medical Council (GMC) be interested? The Health ombudsman? Probably not… 

But a fine for not doing paperwork correctly is possibly better that having to pay out for admitting they messed up if I see the report of the meeting. Well unless they can put you in jail as they can for not doing your council tax right…

I am going to add my comments to this bullshit:

A Significant Event Analysis Meeting like this is a standard medical way to learn from events where there have been negative outcomes or a patient has concerns regarding their care. where they fucked up and they know it, but have been subject to an official complaint from a patient who has nothing better to do, when their health is already suffering, than try and get their head together and write to complain . And hey there is nothing better than a patient who has just had brain surgery- after all their brain is not working the best for a while and you can probably convince them far easier than many…

Involved parties are encouraged to consider both things that went well they didn’t have to pay for an MRI out of their budget, or even a prescription … And well they didn’t kill me, and I didn't  have a stroke- so they don't have to pay out compensation for that… win, win eh?

and those that could have been done better. well you did finally write a referral letter…only 3 appointments late and non urgent, when the very same issue was deemed urgent by a different doctor a few months earlier. So you did ‘do your job’ to the best of your (somewhat limited) knowledge …

We have looked back through both your complaint letters,  and replied ignoring or twisting the comments written in your clinical records of me, as well as lied about things where you know you will be found guilty

investigation results and the specialist letters. where the doctors failed to follow the advice of the specialist and thought it appropriate to do nothing, even when the causes of my symptoms hadn’t been found…oh and I almost forgot- you then wanted to drug me with diazepam or ‘elastoplast’ the issue with painkillers… 

The doctors have openly reflected on their notes and decision making in the light of your subsequent diagnosis. I bet… and they thought ‘oh shit!’… I hope it gives them many sleepless nights- so they NEVER do this again…

Unanimously we are very sorry that you and your family are having to endure this condition I am not stupid - I know I would have had to endure ‘this condition’ anyway, well apart from the few extra months stuck on my sofa thinking I was dying while your doctors said I was ok… what does upset me is you idiots calling it ‘a condition’ rather than actually apologising for ignoring me for 3 months, admitting you made a mistake and giving me some compensation for what I paid out for -when it should have been you doing so…

and the treatment associated with it. funny that you didn’t even manage to take my staples out after surgery then?… even with 5 days notice…  and even after the day I sent the private scan results in showing a fuck off great lump in my head and Dr Strickland called me saying ‘let me know if there is anything we can do..’ … actions …um …speak louder than what?? … oh words…that's it…

We acknowledge that you most likely already had the Hemangioblastoma to some degree when you first presented. Some fucking degree?? What like 359 fucking degrees of it you fucking morons… Hemangioblastoma’s on any medical literature are SLOW growing, I had this bloody (sic) thing years… what was also showing when I presented was the hydrocephalus where the tumour was causing fluid on my brain, yet you failed to note that my dizziness and head pains got worse each time I sneezed, coughed or strained- which are classic signs of increased pressure within the skull… red flags on any medical literature…

We would have liked to have reached the diagnosis sooner …liked. I’d like it if you would have the decency to admit you are sorry and fucked up by paying me back the private costs of an MRI and a contribution to the extra pain you put me through. The only reason you’d have liked it too is so that you couldn’t be found guilty of this.

in the hope that this might have limited the impact on you I guess a couple of months less sitting on the sofa feeling dizzy 24/7  might have helped many things…

and we are sorry this did not happen” …yes I bet. Well I don’t want to reduce your 100K or so income do I? … I have no idea how you manage to survive on it, especially considering it takes weeks to see you and I cant even get you to sign your own letters you have written to me, you must be so busy… maybe you would like to swap and manage on about 11K since we lost half our customers while I was ill for so long and my husband had to care for me. I am sure I could probably do just a good job as you anyway…after all what is NICE, NCBI, GP notebook and the NHS website for…

Health Ombudsman Complaint - part 5

Part 5, the final part of my complaint -  about my complaint to the health ombudsman!…

7) Dr Brodie said I had ataxia in January, and this is listed as a neurological symptom according to the NHS, and it continuing and getting worse is surely a progressive, sub‑acute loss of central neurological function? So why wasn’t I referred for a brain scan or a neurologist as urgent- as per NICE guidelines?

8) How can my gait be referred to as normal when I had my husband holding my arm as I walked in the room as I was so unbalanced? Especially as only Dr Brodie did a heel to toe test.

9) Re your advice from the ‘GMC’s good medical practice’, I disagree that many of these points were applied.

10) Please can Giggs Hill show me that they have ‘Significant Event Analysis Meetings’ for cases where there is a serious health concern, or rare diagnosis- but when they did everything correctly?

11) Why was this chart not used by Giggs Hill and a normal neurological exam deemed higher significance than dizziness or increasing and worsening headaches?

www.ncbi.nlm.nih.gov/pmc/articles/PMC2593538/table/tbl1/ (Table shown on part 4)

Re point 7:  

I am also pretty disgusted that my links and comments were supposedly read and yet you stated that your advisor found no evidence that the practice did not adhere to NICE and GMC guidance. How can these links not count?  Maybe as it would mean the doctors obviously failed me if you did take them into account?  

The links are from medical websites, not someone’s personal opinion. If they don’t count then your guidelines need updating.

Although the NICE guidelines say “Consider an urgent direct access MRI scan of the brain (or CT scan if MRI is contraindicated) (to be performed within 2 weeks) to assess for brain or central nervous system cancer in adults with progressive, sub‑acute loss of central neurological function. [new 2015]”

I believe I did have progressive, sub-acute loss of central neurological functions, just the doctors either did not check, notice them or deem them significant.  
Please can you tell me why your advisors did not think I had this and had told these issues to the GP?

For your information the words (on the NICE guidelines) ‘central neurological function’ do not give an exact result in Google- which make me wonder if they were written so a layperson cannot prove they had this as there is no simple proven answer as to what this means and so it is far harder to say I had this problem and therefore that the doctor was at fault.  

When there is no direct definition it can be changed to suit in a way that favours the system.

How would the doctors have listed that there were abnormalities on examination if they didn’t even check? Only Dr Brodie did the heel to toe test and that was still the only hard cerebellar sign I had when I was admitted to St George’s at A&E as an urgent case. I also had plenty of other signs that I tried to tell them as many of as possible. 

How do I know which symptom may be relevant when you have a whole list of new issues that are getting worse by the day – and are not helped when you are told to only mention one issue by the GP! 

Also I was certainly not asked if I had headaches that woke me at night, felt nauseous etc. (I had lost about ½ stone in a couple of months by March 2016- making me underweight.)

Finally, I was not aware that GPs were able to ask for direct access to scans, or I would have been pushing for that and not just seeing a neurologist to then refer me for a scan. I KNEW there was an issue with my head or neck, and as you can see I wrote these concerns down for Dr Milne as knew most of my symptoms could have been various serious problems.

Point 8: Raised in comments above. How can my gait be referred to as normal when I had my husband walking me into the room to stop me falling over? If I walked alone I would possibly bounce off the walls, chairs etc, and I always had my hands held up slightly to the sides to balance me!  Dr Vo and Dr Milne also did not test my heel to toe walking, so how could they have seen if balance problems were present?

Point 9: I have already mentioned my concerns with your comment that Dr Vo acted in guidance with the GMC guidelines already in point 3 above.

Re Dr Milne- the concerns I have:

Adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient I do not feel this was done particularly well and there were errors that I feel Dr Milne acknowledged, plus even though she had written I was tearful and anxious I did not feel she belittled me for being that way. Although the fact I felt she understood (possibly more than she did) was why I had assumed I was getting an urgent referral and she took my condition far more seriously than I had received with Dr Vo.

Promptly provide or arrange suitable advice, investigations or treatment where necessary. I do not feel this was done, but do feel from the final reply from Glenlyn that Dr Milne recognises she did not communicate with me correctly about the referral.

Point 10.  I have spoken to two NHS GPs, and a senior GP receptionist who all have told me that these Significant Event Analysis Meetings ONLY happen where the doctors didn’t diagnose correctly or made a mistake. Also on my final letter from Glenlyn it clearly states that this meeting found Dr Brodie’s actions were “considered appropriate” yet fails to mention feedback of any of my other appointments with Dr Vo or Dr Milne – which surely means they did not find the same result with either of them?

Point 11.  I know I have mentioned this chart earlier and included it on my last letter to you, but all the doctors comments and your reply still seem to be saying that (even if done fully and correctly- which I do not believe they were as stated above) that ‘neurological testing’ is the main basis of possible diagnosis, and what needs to be done next and at what speed. 

Yet this graph clearly shows the “Best estimates of risk of tumour with headache presentations in primary care and associated features” that I had all of the top 3 risk factors. 

These 3 risks alone added up to 14, yet an abnormal neurological examination is listed as 0.5 – so why were the GPs saying they hadn’t made a mistake using evidence that was 28 times less accurate then the best available evidence?

And of a lesser concern to my case:

12) Appointment times. You said in your final report that these could not be formally investigated as I had not raised them as a concern previously with the practice, yet I did in my complaint letters to Glenlyn on 16/11/16 “In September I booked to see a GP to go through some of my ongoing symptoms since the operation – the earliest appointment we could get was about 5 weeks later on 24th October!”  

I also listed 5 separate date concerns to Charlotte Cheshire on my letter dated 17/8/17.

13) Re my referral to St Georges- this only occurred on time because ‘I’ had a doubt that it had been sent and called Giggs Hill to confirm if it had been. If I had not have called I would like to find out how Giggs Hill know they would have sent it within the correct time frame?

I would also like to bring up some concerns I have:

14) On my discharge letter from the Physiotherapy Department at Molesey Hospital, the information states “her symptoms have now improved significantly and she has full active range of movement (in) the neck with minimal discomfort”…which is completely opposite to what I was saying to them and untrue!

When in fact neither or the two physiotherapists I saw seemed to be able to explain why I was getting dizziness from the neck symptoms I had, I had told Kamil that when I did the exercises he set they made me feel worse- 

If I did them in the day they made me dizzier after and even if I did them at night I felt dizzier the next morning, and both increased the neck pains I was getting- so I was not going to continue to do them.  

Basically they told me there was nothing else they could do to help with my symptoms as in their opinion my neck was fine- and so I agreed to be discharged. Slightly different to saying I had ‘full active range of movement’ and ‘minimal discomfort’! 

Are comments like this on the NHS basically written to tick boxes and not actually help the patient? 

15) I am also very concerned about the report of my NHS 111 call. The difference in what I was feeling and what was written is enormous! From the operators report it seems I presented with little more than a mild headache, from my experience I was sitting on my sofa, in blinding pain, barely able to move or put my head up or down without it feeling like it was going to explode and my eyes twitching with the severity of pain when I moved. I could barely talk or listen to them as the pain was so severe and I now think I was in some kind of shut down. This pain was FAR worse than anything I experienced in hospital after brain surgery! Even when I refused pain killers.

I know I said no to some of the things listed, but certainly not all on the listed report and I have absolutely no recollection that they told me to go to my GP within 3 days if it continued. I remember thinking at the time that this was a pointless phone call as all they did was tick off boxes and that they didn’t listen to me at all, or understand that I had a neurologist referral and my concern was could this be something serious?

The reason we called them is my husband wanted me to go to A&E, but I refused saying I couldn’t manage it and didn’t want to go. Plus, as keeps being advertised- A&E is for ‘accidents and emergencies’, of which this was neither- as my GP had said it was an ongoing problem. But I agreed that we could call 111 and I would go to A&E if they suggested it.

I would like it if someone could listen back to this recording and see if the call handler acted appropriately?

Finally on this call- what is the point in sending a copy of the report back to my GP if they didn’t follow up that I was supposed to see them? (I was not in a fit state to remember this) nor take into account that my neurology referral should maybe be speeded up due to the pain level increasing severely and needing to call 111 as in severe pain?

The ending of this letter above was written on my first part of this blog post.

I have no idea if the Health Ombudsman will even address it, or on some bureaucratic bullshit they will once again find no fault with any of the GP’s or the doctors practice.

But my next step is to contact the GMC about making a complaint about two of the doctors.

The system where a patient has to complain about their treatment without support from someone who knows how to complain for them is ridiculous. As there is one thing I have learned - there is a system in how to complain and get somewhere, and most patients don't know it.

Although I think complaints to most organisations can me made legally for up to two or three years after the start of the problem and by then the patient will hopefully be more healed from their trauma, but in many ways doing so earlier would be more helpful and beneficial, as both the doctor is more likely to remember details of treatment and hopefully they won’t do the same to anyone else!

But speaking as a patient who has had brain surgery- it is a nightmare.

I know just trying to write the first letter to the doctor’s surgery was awful, I was in tears just trying to express the basics of what I wanted to write. It was hard enough to find the correct organisation  to complain then organise my thoughts to write the address on a new word document.

Then when I knew where who was writing to I couldn’t think of the words, it was so hard to open a web page to find info I needed and try and link it to what I was saying. I knew what I was unhappy about and how disgusted I was with much of my treatment, but I couldn't analyse what they replied back as it just didn’t make sense.

And typing… it was SO hard. For each word I wrote it wrongly- either I couldn't remember how to spell it, or my brain typed the letters in the wrong order, I hit back space more than any other button in the keyboard! If I remembered a point I wanted to raise I had forgotten it before I could type it up.

I had notes that even I couldn't understand as I couldn't read what I had written as my handwriting was so poor.

It was only the last few months (at least 18 months after surgery) where I looked again at the reply comments and could see the instances where they had contradicted themselves in what they had written, or mentioned something that they didn’t do and I had the realisation that I needed to reply back directly to that point.

Yet they are doctors who know the technical names, what the procedures are and can probably have lawyers on it right away to make sure they don't say something they shouldn’t. I was still suffering with a traumatic brain injury - what else can 6 hours of brain surgery be? And yet I was supposed to compete with this system without support. It’s madness and not designed for the patient at all- more to protect the doctors and the system.

I so appreciate I was lucky. My parents paid for a private Dr, then scan. I didn’t have a stroke or anything that caused significant damage to my heath because of the delays that shouldn't have happened, despite the fact that my health was deteriorating fast.  But it really was luck and privilege (or my parents giving me that privilege) that prevented anything more serious, and many people don’t have either.

It is for those other people that I will do my best to make sure that these doctors, and hopefully others will not fail other patients in the future, and urgently refer them for the treatment they deserve… the percentage of survival for brain tumour patients is dire enough as it is, the delay could easily be enough to kill them..

I really was lucky.

The Dr's could not see the woods for the trees

Health Ombudsman Complaint - part 4

Part 4 of my complaint about my complaint to the health ombudsman… I have listed only a couple of the summary points at a time, so I can include my comments about them in the same blog post.

This is a long post, and involved me looking at the various guidelines in online medical sites as to what the correct response should be with someone with the symptoms I showed. It actually makes me somewhat angry and tearful as I had so many signs that the GP should have sent me for an urgent MRI (something I did not know could happen- I thought an MRI had to be via a consultant)

I also have a now friend who had the exact same tumour and operation as me, yet when she saw her GP she was sent for a CT scan THAT DAY and operated on a week later! Purely as her GP recognised the signs of a possible brain tumour- and apart from nausea they were pretty much the same as mine! To think your life is put in danger – probably partly depending on your GP surgery’s budget - is quite terrifying.

5) I believe Dr Milne did not write down my symptoms correctly, nor understand their seriousness, and should have referred me directly to have an imaging scan.

6) Why was my ENT appointment sent as URGENT (letter dated 27th January 2016 by Dr Brodie) yet when I finally got the appointment with neurology it was not sent as urgent, despite being about the exact same problems?

Point 5: On my medical notes it states than on 23rd March 2016 Dr Milne assessed my gait as normal. How can she have done this without adequate testing? (as point 4)

She also has written that I was ‘tearful and anxious’ which from latest research suggests it would also be related to damage in my cerebellum and I feel should have been taken as yet another symptom that I had a possible issue there.

In fact I had said to all the doctors that I felt I was going insane and was super anxious and felt my ‘fight or flight’ was on overdrive- as I felt it was related to whatever the problem was.

https://en.wikipedia.org/wiki/Cerebellar_cognitive_affective_syndrome “They reported that patients with injury isolated to the cerebellum may demonstrate distractibility, hyperactivity, impulsiveness, disinhibition, anxiety, ritualistic and stereotypical behaviors, illogical thought and lack of empathy, aggression, irritability, ruminative and obsessive behaviors, dysphoria and depression, tactile defensiveness and sensory overload, apathy, childlike behavior, and inability to comprehend social boundaries and assign ulterior motives” & “Levels of depression, anxiety, lack of emotion, and affect deregulation can vary between patients”

On the letter written to referral to the neurologist, she has written “may lose her balance if turns quickly”- when I would have probably fallen over if I turned quickly, even turning slowly I would lose balance, plus that I have “no visial disturbance” when on the letter that I gave her with my symptoms, before she wrote this referral, it clearly states multiple times that I was having visual problems (see evidence 1 -in part 3) and I had run through my symptoms when I was with her.

She also contradicts the point that I had ‘no loss of balance’ by writing “she does fall slightly to the left with her eyes closed” in her notes.

Also I would appreciate answers to my questions in my last letter to you as I feel these all relate for certain by the last appointment with Dr Milne:

I am not sure that you are reading the same NICE guidance as me? (Nice Guidance for suspected cancer of Brain and Nervous System)

As it says Consider an urgent direct access MRI scan of the brain (or CT scan if MRI is contraindicated) (to be performed within 2 weeks) to assess for brain or central nervous system cancer in adults with progressive, sub‑acute loss of central neurological function. [new 2015]

Surely I HAD sub-acute loss of central neurological function?

On: www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/overview_of_nervous_system_disorders_85,P00799/  

Signs and symptoms of nervous system disorders are:

The following are the most common general signs and symptoms of a nervous system disorder. However, each individual may experience symptoms differently. Symptoms may include: Persistent or sudden onset of a headache, A headache that changes or is different, Loss of feeling or tingling, Weakness or loss of muscle strength, Sudden loss of sight or double vision, Memory loss, Impaired mental ability, Lack of coordination, Muscle rigidity, Tremors and seizures, Back pain which radiates to the feet, toes, or other parts of the body, Muscle wasting and slurred speech.

Of which I had: 
Persistent or sudden onset of a headache, 
A headache that changes or is different, 
Loss of feeling or tingling, 
Weakness or loss of muscle strength, 
Loss of sight and blurry vision, 
Impaired mental ability, 
Lack of coordination, 
Muscle rigidity, 
Muscle wasting, 
Slurred speech.

Or on:www.gpnotebook.co.uk/simplepage.cfm?ID=1905918027

It says to refer urgently patients with:

Symptoms related to the CNS in whom a brain tumour is suspected, including:

progressive neurological deficit, new-onset seizures, headaches, mental changes, cranial nerve palsy, unilateral sensorineural deafness, headaches of recent onset accompanied by features suggestive of raised intracranial pressure, for example: vomiting, drowsiness, posture-related headache, pulse-synchronous tinnitus or by other focal or non-focal neurological symptoms, for example blackout, change in personality or memory, a new qualitatively different, unexplained headache that becomes progressively severe, suspected recent-onset seizures.

Of which I had: 
progressive neurological deficit, 
headaches, 
mental changes, 
headaches of recent onset. 

Accompanied by features suggestive of raised intracranial pressure: 
drowsiness, 
posture-related headache, 
pulse-synchronous tinnitus 
unexplained headache that becomes progressively severe.

Or on: http://practicemattersmag.co.uk/article-full-reading.php?id_article=124 

“When should a patient be referred to a Neurologist?”

It says for these symptoms how urgently they should be referred:

Upper motor neurone signs-

Cortical, cerebellar or brainstem signs: urgent (referral)

Vertigo

If accompanying earache, discharge, tinnitus or hearing loss: consider referral to ENT

If other neurological symptoms or signs: urgent referral

Which strongly suggests that I SHOULD have been referred urgently, and not at the 4th Doctor appointment, as routine.

On https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2593538/

‘Imaging patients with suspected brain tumour: guidance for primary care’ it says:

Headache with associated features

A recent review of the literature of headache with associated features found the following relevant positive likelihood ratios (likelihood ratio = post probability/prior probability) with 95% confidence intervals (95% CIs): headache with abnormal findings on clinical neurological examination 5.3 (95% CI = 2.4 to 12); headache aggravated by exertion or Valsalva-like manoeuvre 2.3 (95% CI = 1.4 to 3.8); headache with vomiting 1.8 (95% CI = 1.2 to 2.6); headache with focal symptoms 3.1 (95% CI = 0.37 to 25); worsening headache 1.6 (95% CI = 0.23 to 10); and cluster headache 10.7 (95% CI = 2.2 to 52). Another review has given rapidly increasing headache frequency 12 (95% CI = 3 to 48); headache causing awakening from sleep 98 (95% CI = 10 to 960); and dizziness or lack of coordination 49 (95% CI = 3 to 710).

With this table shown: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2593538/table/tbl1/ 

Clinical feature	Likelihood ratio (95% CIs)	Risk of tumour in headache presentations in primary care, %
Headache causing waking from sleep	98 (10 to 960)	9
Dizziness or lack of coordination	49 (3 to 710)	4
Rapidly increasing headache frequency	12 (3 to 48)	1
Abnormal neurological examination	5.3 (2.4 to 12)	0.5
Headache with focal neurological symptoms	3.1 (0.37 to 25)	0.3
Aggravated by exertion or Valsalva-like manoeuvre	2.3 (1.4 to 3.8)	0.2
Associated vomiting	1.8 (1.2 to 2.6)	0.2
Worsening headache	1.6 (0.23 to 10)	0.1

I HAD headaches causing me to wake from sleep, dizziness and lack of coordination, rapidly increasing headache frequency (from none in November 2015 to every day in March 2016), aggravated by exertion or Valsalva-like manoeuvre and worsening headache severity. On this chart I had the 3 most common symptoms of a brain tumour as well as others and yet the GPs didn’t feel it necessary to even refer me to neurology as urgent!

These top 3 symptoms (which I had) say they are FAR more likely than ‘abnormal neurological examination’ or ‘headache with focal neurological symptoms’ to show the risk of a tumour…yet your report seems to say that the doctors only took into account the abnormalities on neurological examination. 

How can these other things I had stated not be taken into account?

 

Recommended guidance for investigating for tumour in primary care.

• Red flags — presentations where the probability of an underlying tumour is likely to be greater than 1%. These warrant urgent investigation.

• Papilloedema

• Significant alterations in consciousness, memory, confusion, or coordination

• New epileptic seizure

• New-onset cluster headache (imaging, particularly of the region of the pituitary fossa, required but non-urgent)

• Headache with a history of cancer elsewhere particularly breast and lung

• Headache with abnormal findings on neurological examination or other neurological symptoms (although evidence base suggests orange flag)

• Orange flags — presentations where the probability of an underlying tumour is likely to be between 0.1 and 1%. These need careful monitoring and a low threshold for investigation.

• New headache where a diagnostic pattern has not emerged after 8 weeks from presentation

• Headache aggravated by exertion or Valsalva-like manoeuvre

• Headaches associated with vomiting

• Headaches that have been present for some time but have changed significantly, particularly a rapid increase in frequency

• New headache in a patient over 50 years

• Headaches that wake the patient from sleep

• Confusion

• Yellow flags — presentations where the probability of an underlying tumour is likely to be less than 0.1% but above the population rate of 0.01%. These require appropriate management, and the need for follow-up is not excluded.

• Diagnosis of migraine or tension-type headache

• Weakness or motor loss

• Memory loss

• Personality change

So if I had these signs below why wasn’t I given an urgent CT scan or MRI?

Red flags:

Significant alterations in consciousness, memory, confusion, or coordination

New-onset cluster headache

Headache with abnormal findings on neurological examination or other neurological symptoms (I could not do heel to toe test)

These orange flags:

New headache where a diagnostic pattern has not emerged after 8 weeks from presentation

Headache aggravated by exertion or Valsalva-like manoeuvre

Headaches that have been present for some time but have changed significantly, particularly a rapid increase in frequency

Headaches that wake the patient from sleep

Confusion

And these yellow flags:

Diagnosis of migraine or tension-type headache

Weakness or motor loss

Memory loss

Personality change

And on: www.nhs.uk/Conditions/Brain-tumour/Pages/Symptoms.aspx

Common symptoms of increased pressure within the skull include:

new, persistent headaches – which are sometimes worse in the morning or when bending over or coughing, persistent nausea and vomiting, drowsiness, vision problems – such as blurred vision, double vision, loss of part of the visual field (hemianopia), and temporary vision loss, epileptic fits (seizures) – which may affect the whole body, or you may just have a twitch in one area

and for the cerebellum – may cause balance problems (ataxia), flickering of the eyes (nystagmus), and vomiting.

When to see your GP

It's important to see your GP if you have symptoms like those described above.

While it's unlikely that you have a tumour, these type of symptoms need to be evaluated by a doctor so the cause can be identified.

If your GP is unable to find a more likely cause of your symptoms, they may refer you to a brain and nerve specialist called a neurologist for further assessment and tests, such as a brain scan.

Or on www.ncbi.nlm.nih.gov/pmc/articles/PMC515188/

The reasons for a GP sending a patient for scanning with a headache.

It says it should be done for people “with symptoms suggestive of raised intracranial pressure, such as new onset headache in the early morning; or headache that is worsening with coughing, sneezing, or straining should each be viewed with concern”

Dr Brodie said I had ataxia in January, and this is listed as a neurological symptom according to the NHS, and it continuing and getting worse is surely a progressive, sub‑acute loss of central neurological function?

So why wasn’t I referred for either a neurologist or for a brain scan with 3 GP appointments and only as NON URGENT on the 4th?

Also regarding the final reply letter from Glenlyn, it clearly states that Dr Milne “did not give sufficient weight to your symptom cluster when deciding upon a routine referral” and did not clarify why she was referring me and why it was on a non-urgent basis. 

I am thankful that Dr Milne apologised for this, but surely these very comments admit there was wrongdoing and I should have been referred as URGENT on the NHS and not had to pay for a private consultant and then MRI?

The letter again has no comment as to what was said about this consultation at the Significant Events Analysis Meeting (again as I am assuming they did also find I should have been treated differently to how I was?)

Point 6: this has been covered in point 5 above