neuro docs

[bikerlifestyle]

i see a consultant at the Barberry Centre at birmingham Q E hospital he is a consultant in behavioural neurology

I really struggle with him, because the problems that cause me the most problems in my life seem to be swept aside and all he wants to do is give me anti depressants, i have asked him many times that if there is nothing they can do, then just tell me and i will have to suck it up and get on with my life

i have been seeing him for the last 5 years, and every 9 months or so, he changes my meds and nothing helps

i am not expecting miracles or anything really, but i do feel distant from him and find it hard to open up, and the lady at headway who is helping me is going to help me change consultants as i don't feel i am getting anywhere

does anyone else have similar problems?

how do you get on with your consultant?

can you open up fully to them?

[kellysuriol]

Hey, I have been to see a neuropsychologist and she has introduced me to mindfulness CBT and stress reduction. I had the same issue everyone trying to get me on anti D's which I won't take. This seems to take a holistic approach using age old practises with modern science. I only saw her two days ago, so I know nothing. But I feel encouraged. Hope this helps. Good luck!

[bikerlifestyle in reply to kellysuriol]

CBT is probably the single most important treatment i have had (i spent 4 years going to leamington rehab hospital seeing a Dr. Dene Focias, Neuro-physcologist, without his help i wouldn't be where i am today

i owe him so much

[cat3]

I can't be of any help with this issue because I'm totally in the opposite camp. I have been so disenchanted with neurologists and psychologists. I had CBT for one year and decided it wasn't arming me with any new tools or ideas. I have taken antidepressants for many,many years and can honestly say that they make my life worth living.

Your problems are a direct result of brain trauma whereas mine are long standing and may or may not have been exacerbated by the sah. I know that many people cannot tolerate the side effects but for others,like me, they are life savers.

It sounds like a change of consultant is what's needed if you're still struggling after all these years......one who sees you with fresh eyes and fresh ideas.

Hope Headway comes up with a good one for you. Good luck. x

[truthtell in reply to cat3]

I totally agree with you cat3. (I seem to be on this site all the time now that I have found it - it is such a relief to talk to people who understand) My son had is accident 15 years ago, he is now in his 40's, has epilepsy, mood swings, mobility problems etc,. He is still in total denial about most of his problems, no insight, bizarre behaviour. Sees an epilepsy specialist once a year if he is lucky. Consultant (probably) asks how is he getting on, son (probably) says "I'm alright" as that is his resonse when he is asked by people. He will not let me attend his appointments, medical profession refuse to speak to me, citing various acts. Disenchanted is one of the nicer words I could use.

[brighton88]

AS FOR A REFERRAL TO ANOTHER IF YOU FEEL THIS CONSULTANT IS NOT FOR YOU

[ncmurphy1951]

YOU MUST ARRANGE ASK DEMAND TO BE SEEN BY A NEUROPHYCOLOGIST ASAP

[Hidden]

Hi All,

I new on here, but been reading posts for a while and they have really helped me. Thank you.

I was told by my neurologists on Friday that a subdural bleed following an RTA is nothing to do with the brain! My subdural bleed was on the left and I have frequent invountary movements on the right hand side of my body. Apprently it is all psychological. It appears the doctors also think I have lost my intelligence after landing on my head at 35mph (was on a bicycle).

Sorry for the moan, but no do not get on with neurologists and most doctors as they refuse to listen. They hear only what they want to hear.

I've asked to see a neuro physicologist GP says she cannot refer me because it is a neurologist job, neurologist said he can't refer me because it is a GP job!

So tired, I am loosing the ability to fight the system.

[pollyanne in reply to Hidden]

my husbands bleed was on the left and his right side is the weaker side on asking about this he was told it was the opposite side that gets affected, so that may account for the movements on the opp side! When was your accident?

The psychologists view of things we dont take much notice of as they said after testing that my husband must have been below average intellligence before his accident(HE had degree, was chartered engineer and ran his own company!) we never bothered with follow up appointments as they didnt inspire us either and just stick to the doctors/consultants we feel we can trust!

it is a fight though- but stick with the good ones

[UNHID in reply to Hidden]

Hi sorry to hear of you not being given a voice and properly heard.

It is absolutely DISGRACEFUL and unacceptable when you feel you are fighting a system that, at least in theory ought to be offering, at least support and empathy.

Well maybe we are missing something!

If it is any bit of help or consolation at all, let me say I know exactly where you are coming from. I was " in the system" for 8 years and the overall ethos was one of power, control and oppression; making work for themselves, sad, narcissistic nincompoops needing to bully vulnerable souls feel good about themselves. I felt intermittent alarm and distress, I believe the CRIMINAL OFFENCE of harrassment was COMMITTED by more than one employee. Also I encountered that the bigger the wage, the bigger amount of crap spewed from their mouths. Well finally after having my intelligence insulted once too often and believe me it was the norm rather than the exception,I don't see any of them as I felt at the time I cannot feel any worse than I do and of course no one will be getting paid a fat salary even though not fit for purpose.

Anyway \i quit the system, as particularly when you are dealing with idiots with little conscience, (How do they sleep at night?) you won't get anywhere. WHO DO THEY THINK GIVES THEM THE RIGHT TO PLAY GOD?

[Hidden in reply to UNHID]

they have the power to help or leave us in oblivion..they have the earthly power of the gods..and the first one i met made me feel so crap,i pushed for second opinion..and now getting help ...well said they are not freaking gods! lol

[Hidden in reply to Hidden]

me too.bloody ping pong..keep fighting.i am.lol

[SASSYIAM in reply to Hidden]

hi bettyK,i am sorry you feel/have lost the ability to fite the system I hope things get better real soon.U are among empathisers!! n here is the place 2 let out your frustrations.we've all been through similar xperiences.keep the faith.

[straydog in reply to Hidden]

Hi Betty, you can self refer to neuropsychologist.

[Hidden]

Hi pollyanne,

Thanks very much for your reply.

My accident was last July. I am still not back at work and it looks like I am going to loose my job, largely because if I am under fluroscent lights, I get big involuntary movements in my right hand side. I also have no ability to manage stress and just go to bits. My work will not help with any of this, even though there own occupational health report says they need to! The doctors won't resolve any of these issues either. My speech has also started to get worse and I can't control my temperature. All they say to me, it is psychological! They seem to forget the bit about me landing on my head at speed.

I am sorry your husband was treated like that. Hope you are getting some better care now.

[Hidden in reply to Hidden]

You might have hormone issues if you can't control your temperature, get it checked out!

[Hidden]

bikerlifestyle, In my humble opinion I would definitely change consultants, or if you can try and get him/her to understand better.

Heres a share of some of my experiences with consultants etc.......

When I last saw my consultant he could see my difficulties (been seeing him on and off for 6 years and I use to hide them, but don't anymore. As we know if you cant see them, apparently they're not there..... I joke of course!) and he said something like

'I fixed the problem in the brain (the bleed) thats my expertise, but you need to see a neuro psychologist to help you understand the workings of the brain and come to terms with how the brain works after a trauma because that's there expertise"

So i saw my G.P. (consultant sent a letter pointing them in the right direction) he said "I'm a general practitioner, I know a little about a lot of medical illnesses and therefore only a little about brain injury" and he then set the wheels in motion (so to speak) to get me the help I needed. What Headway describe perfectly as the hidden disabilities. Hooray! after 5 years a lot of talking, explaining and most of all not giving up, I finally got to see someone who can help and that happens to be a Neuro Psychologist. He (yes a man) has been fundamental in helping me to understand how I feel about the changes to my life post brain haemorrhage. He has helped me to accept the lack of understanding from family friends and the so called many "professionals" (Not all family, friends and "professionals" but definitely some) and see it from their point of view. He told me, people don't always understand you have to help them, you don't have to give a lot away, but a little helps. He said, pre injury you were one of the many who didn't understand, post injury you do understand. but that doesn't also make others understand any better, It's not there fault, they just don't get it, like you didn't fully get it until it happened to you.

When I have appointments with docs, consultants etc... We (me and husband) always take along various Headway booklets and if necessary show the booklets, which explain far better than we can the workings of the brain. (In a practice of 3 G.Ps I got nowhere until I saw the youngest G.P. who was open to change and listened to me and hubby and took time to read the Headway leaflet on a G.P.s understanding of Brian injury)

My (N.P) suggested I buy and read....Mind Over Mood.... change how you feel by changing the way you think, by Dennis Greenberger PhD and Christine A. Padesky PhD

Info i sourced when buying the book. Amazon full price- £17 plus postage, or Amazons more buying choices new and used from about £13 plus post. ( I used new and used and paid about £14 in total) If you look at the book on Amazon it lets you inside the book and you can read a few pages (its not a full book, just a taster). E. Bay have the book and the prices are very reasonable if you are prepared to bid and wait.

I've had the book 6months and only read a couple of chapters but its helped me, my hubby and friends and family. I Thought I was mad or going mad and this book and the N.P. have been and continue to be a massive help.

The book is only a suggestion, but if you do have it or get it let me know how it helped you.

Take care everyone

[bikerlifestyle]

Thanks for that, i have open open and frank with my consultant even if i feel like i am being stupid

so don't have a problem opening up.

i just mention my issues and it seems to go straight over his head,

but i just feel like its going nowhere

i had a big psychological assessment and al i got back from him, was we have ruled alzheimer's out (i didn't even know it was a possibility)

[Hidden]

You have every right to get the correct help you feel you need. I would ask the consultant to discuss what help you have had since you starting seing him and talk about what has and hasn't helped. Review your history together and maybe you will have to start over, either with him or someone he can recommend to help you. I will keep my fingers crossed you get he help you want. Good luck

[bikerlifestyle in reply to Hidden]

i think its gone too far, i no longer have any faith in him

[rubikscube]

Hi, I have given up with mine, and I too refuse anti depressants - I used to work as a dispenser - and for me I know I would much rather work through my emotions on paper in my journal and face my ups and downs. Seeing my journal from day to day - week to week I can see how my recovery is progressing in the real world. Its funny how one of the professionals I used to work for is on the anti depressants cant even look me straight in the eye now( since my BI I am really direct and open and honest, no bs)! But anyway back to your original post, I agree with a lot of what leslieDiks said, as 'they' are on the outside with no subjective experience, I have an appointment tomorrow with my neurologist and I just want to explode and complain about my last assessment with my NP who had her iphone going off with her FB updates! then sent her report back ungraded and will have to do again in 6 months or a year! cos I am not ready! I really am going crazy!!!

I went in the week after my dad had died so naturally I was upset, she offered me a course of AD's, these 'professionals' really do offer them out like candy, the (corporate) pharmacy I used to work for worked on commission, he used to rub his hands together for the amount of scripts that he stamped each day! Yes, meds do help a high percentage of people, but many people are taking them to feed the corporate world.

So, it is important that we the patients do take a step back and question when in doubt, be calm and ask for an independent opinion, can you go to another city?

I am stuck on this rock called Jersey I would have to go back to Southampton, Although I am planning to ask my Neurologist for an independent assessment and telling him tomorrow that I do neither respect or acknowledge his one and only NP as a professional therefore her opinion is invalid!

So, in response to your question, I have some issues........

On reflection, to these professionals and my words and the pharmaceutical world I once worked in, you are disconnected - my NP or one of her family members could be affected by BI tonight, she has been working in this field for the past 15 years of her life she has to be disconnected to apply her knowledge - this is what has turned her into this patronizing biatch - I should feel sorry for her really - she is the one who is 2 steps behind me and she doesnt even know it!

[Hidden in reply to rubikscube]

Great post, it resonates entirely with my thoughts and experiences. One thing though, there are times I feel when there's no alternative than to take antidepressants such as when someone has such serious cognitive problems that CBT would be futile. I do believe though that we can all be conditioned i.e. our thought process be altered, on some level. My gripe with CBT though is that it comes with prerequistes that the professionals don't always consider such as the ability to engage, be flexible, pay attention, etc. I've always felt that I couldn't engage fully with therapy precisely because of those reasons, but this has never been highlighted by any therapist, I really believe that they're clueless and like you say they don't have the benefit of subjective experience. Unfortunately it seems most are just fulfilling their job description, having become qualified in a subject area still in it's infancy and just wanting to divulge everything they've learned at university whilst in the process ensuring they're protected from any issues of negligence but often not helpful to the people they're treating. I'd like to think that there are more radical and exploratory therapists out there who sincerely acknowledge how shit life is for us and really want help/contribute to knowledge.

[bikerlifestyle]

i am on about my 6th type of anti depressant since seeing him, and yes they do help with my mood, and they do help me sleep

but i just want to know if there is nothing they can do to help me, then just say, i don't want false hope anymore

I have to change consultants, because i have already done it in my head.

memory, confusion and cognitive issues are my main problems, along with an inability to deal with stress and negativity. i am a very positive person most of the time as this helps me cope.

using a wheelchair and my physical disabilities aren't an issue, i have accepted those a long time ago.

[Hidden in reply to bikerlifestyle]

change consultant..you have nothing to lose..but maybe something to gain.i hate change,even before injury,lol. but it is necessary for progress and getting out of ruts,lol

[rubikscube]

What can you bring to the table bikerlifestyle? what are your experiences so far? Whoever you get as a professional can only advise you and act on what little knowledge they have.

Going to Headway and socializing is the best therapy as these are the people who share in some part your experience, but reading up and researching each and every cognitive problem you have, referencing it and printing it out - give it to your neuro doc at the beginning of appointment, this way, every detail is clearly highlighted and all you have to do is look him/her straight in the eye.

Well, this approach worked for me at my last appointment with my GP, I spent a month on my research, which gave me something to focus on and left me tiered each night and then I shortened it, so it would not take him too long to read, then at the appointment I managed to get things moving, finally he understood what I was trying to say for 5 years!

Its like joining the dots together for them. . . . .

[SASSYIAM]

a consultant was so anti patient that i had to loose my temper with him (in a polite and nice way).he was so upp himself .he asked me if i drank any alcohol (i do only at xmas) silly hubby tried out humour on the guy and replied she is a fibber she sank 2 bots o baileys last nite,hee hee.i am fully aware that many consultants DO NOT HAVE A SENSE OF HUMOUR.soo i as escorted to another room with him shouting disgusting obscenaties about me.the up side i was put onto a younger neuro who as i am a qualified pathologist we could talk openly about my health at that time.needless to say i wont be going back there.i just worry about all patients.i like many on this site am only too fam,iliar with peeps talking to my husband not me??? but i seriously thought a consultant would /should have known better.got me own back but he is still there doing it to other abi's.lets all stick to this site.between us all we appear to be getting lots of help.and they dont think a person with brain injury shud be humourous.well it gets me thru the day does it help any one else???