Neuropsychology Testing

[ClareM]

Got back from holiday early this week and found my long awaited Neuropsychology appointment had come through for the following day - 30th June. This consult should have been earlier this year as it was requested in December but the original referral had been lost.

 

The appointment was for 9am, a good time as I was refreshed after a good nights sleep. The Psychologist was lovely but had little info from Wessex about my haemorrhage so asked me for details. She then proceeded to ask lots of other questions about me and my life since my Nasah.

 

An hour later I was wilting, more so than I had been of late. Luckily she noticed this and said she wanted to stop for the time being. Apparently I should have had a follow up after leaving hospital, but as I live in a different health authority to Wessex this was missed.

 

 If I had had follow up I would have had home support from my discharge and would have probably got to see her a lot sooner.

 

Anyway the upshot is that she thinks I have some cognitive deficiencies and she wants to do testing to see what they are. The tests are about 3.5 hours long and she says I would not be able to tolerate this so will be broken down into 45 min blocks.

 

The first one is in 2 weeks time. In the meantime I am to avoid stress especially at work. The consultant was very concerned about me being put under pressure to proceed with my Checking Technician status ( basically if I make an error it could potentially be fatal) and had to tell my boss.

 

Being as I have only been in my job about 3 months I was a little worried about informing my boss that I may not be up to the job I was employed for.

 

I need not have worried, my line manager, who I had told about the appointment, was so understanding. She told me not to worry and really put my mind at rest, I will not be put under any pressure until the tests are complete.

 

What really surprised me about this whole ordeal was how I felt after 80 mins of intense investigation with the Neuro psychologiist. My head was pounding and it felt like someone was sitting on the back of my next, very similar to the feeling I felt soon after my Nasah.

 

Just made me realise how much fatigue is still part of my life. I had to take a break with a drink and a sugar boost before starting work. It was good to meet someone who could see the fatigue setting in and understand when enough was enough.

 

It took me all morning to get over the 90 min appointment but I am so glad it took place. I will keep posting with my follow up appointments. Hopefully at the end I will know my deficiencies and have coping mechanisms in place.

 

Clare xx

[Winb143]

I used to have a Team come round my house  BIT Team and although they helped my hubby I didn't find them all that good.

 

Once I had come around after a year of hydrocephelus, and was in and out of cuckoo land as I call it.

 

They asked me (I've said this before) what makes you think you will walk, I thought it was a negative attitude to take!!l

So I replied "What makes you think I wont" and didn't want to see them after that.

 

If they couldn't recognise I had hydrocephalus I don't think they were a good Brain Injury Team !!  moan over lol ..

 

You are really doing well Clare and you are good at your job.

I can understand them covering themselves, but never give up as you like your new job.

 

Just rest up and go back to work and show them !! xxx Cheer up Pal xxx

[Tina]

Hi Clare

 

Thank you for sharing this and your future follow up appointments.

90 minutes is a long time, glad you got through it and they were understanding & could see the fatigue setting in.

 

Hopefully as you say, at the end you will know your deficiencies and have coping mechanisms in place to help you with the job you love.

Keep up the good work Clare....huge admiration for all you have achieved

 

Take care

Tina xx

[kempse]

Hi Clare,

 

I'm looking forward to your updates - very intrigued about this subject and often thought I'd like to be tested as I'm convinced I have some cognitive deficits - having it in a report would surely help me convince others I'm not just stupid!

 

I often feel inadequate at work, for example, when having to learn new things or remember what I've read - all embarrassing when I've worked there far longer than anyone else in the office.

 

It all sounds pretty exhausting though - glad they understood the impact it was having.  

 

Good luck and look forward to hearing more,

Sarah

[subzero]

Hi Clare

 

Hope you enjoyed your holiday-

 

Many thanks for sharing about your appointment on 30th June- so interesting to see how that `fairly intense` environment affected you.

 

Also glad your work supervisor is taking a realistic approach what this might mean for work.

 

I think that you guys in your post SAH journey keep pushing the boundaries and face up to the challenges of your own very personal circumstances. Weighing up to the pros and cons and moving on after a consultation like that is all part of your journey.

 

Best wishes Clare-you`ve done so well in a relatively short time.

 

Subs

[momo]

Hi Clare, I found my appointments with my psychologist helped me a lot.  I think its good to know exactly how this has affected you and the reasons why, which part of the brain has been affected for example.

 

My appointments were broken down into shorter visits as like you I couldn't really cope with the longer sessions.  I also found this really tiring both physically and mentally. I found these sessions were in themselves quite stressful.

 

Mine(assessment) took place about 4 or 5 years ago and my memory of it all is a bit sketchy now.  I do remember getting my results and I was quite shocked as I thought I had done really well but I hadn't. 

 

Stressful situations still affect me now, its important that people around you understand this. There are coping mechanisms but sometimes these are not enough for me, we are all different though and we have all affected in different ways.

 

You are doing really well Clare and look forward to hearing more from you. 

 

Good luck and if your psychologist is good she should be able to help you a lot.

[SarahLou]

Hi Clare,

I'm really pleased for you that you're having these tests, I'm sure that they'll give you some of the answers you're looking for.

My SAH was nearly six years ago and I've recently been referred back to Wessex Neuro, my Nurse Specialist did talk to me about Neuropsychology Testing and hoped that I may be able to be tested, however it's too long since my SAH and I can't have the tests.

 

I honestly believe if I'd had these tests years ago I would have much more understanding of exactly how my brain injury has affected me, and it maybe could have helped me with returning to work, helped me with acceptance of who I am now, because even after all this time I still do not have that.

It's great to hear how supportive your work have been, although I wouldn't expect anything less, the NHS is amazing in so many ways!
You are doing fantastically, think how far you've come, I'm sure QA is a better place having you there!



I look forward to hearing how you get on.

Take care lovely lady,

SL Xx

[Gemma B-B]

Hi Clare,

 

An interesting post so thank you for sharing. I have sat two lots of neuropsychological tests - the first was shortly before discharge from hospital and these showed some major deficits, although I wasn't aware of it at the time as the results were not fully shared with me.

 

When I started the process of going back to work I was referred back for more tests (mainly as my first set of tests showed I might not be fit to return to my job as a teacher) and I sat these about 4 months after my haemorrhage. I also found them very exhausting so I think splitting them up into smaller chunks is a good idea.

 

Although they were exhausting, it was very useful to sit them. They did show the areas where I had issues and that allowed me to work on them. Hopefully it will be a similar process for you and the team at the hospital can offer you support after them.

 

Your comment about fatigue is also an interesting one - just this afternoon I was at a works retirement event at a local hotel. Someone I work with asked me how I was doing and 'if I still get really tired'. I said to them that it was getting better but that even now, 18 months down the line, I can still be floored with fatigue.

 

My time spent in rehab helped me learn what things trigger it for me and what my warning signs are but sometimes it still creeps up on me and I have to take a step back and re-evaluate what I am doing.

 

I hope your tests are useful for you. Keep us updated and take care xxxx

[Macca]

Hi Clare,

You know what?  This will have done you a power of good.  Why?:-

 

1) You got to talk about your condition face to face,

 

2) You will have received answers to some of your questions,

 

3) You recognised, in a safe environment, that your body needs more recovery time, 

 

4) You got your job responsibilities in perspective,

 

5) You came out at the other end still standing, if a little tired,

 

6) You will get more answers in future sessions, (more manageable chunks than just one big long session)

 

7) At the end of the day, the moon comes out and the stars still shine - just like you - and tomorrow, again like you - it will be sunny.  The world will still be here.

 

 8)Chin up - look the world in the eye and say "Go on - what can you throw at me today that I can bat back?"

 

9) Don't just go through the tests - use them for your own benefit - analyse them, list and ask questions, challenge your interviewer, turn things round and get the most you can out of the sessions

 

10) More information received means more understanding and that, in turn, means more acceptance of what you need to do to continue getting the most out of life _consider asking for copies of any reports that are made so you can look at them when you have more time to take them in.

 

Well done, I think it's a fabulous opportunity for you

Good luck,

Macca

[Greg 21.01.15]

Clare, First off well done for getting the appointment, I had to fight so hard to get mine within the NHS and also resorted to having a private one through my work BUPA scheme.

 

My NHS one was by the far the better, and the neuropsychologist was kind enough to stay late and based on her initial reading of my results gave me some very helpful advice which included the first sensible indication of timelines for recovery/progress that I had been clearly given.

 

I did the full three hour session (with several breaks), and boy or boy was I shattered, couldn't of thought of doing anything cognitively challenging afterwards, so not surprised you were more than a bit fatigued afterwards. As said by folks above, any knowledge you can get about where your cognitive blips are can only but help you deal with them.

 

A good Neuro OT will be able to help you take the results and develop strategies to help you deal with anything that the tests may (or may not) reveal. If you need such support after the tests and you can't get it through the NHS, I can't recommend enough Headway, for me they have been a lifeline ( I had my monthly F2F OT session today as it goes).

 

And at the end of it all, I think referring back to Macca's point number 7 is a very good place to start.

 

All the best for the follow up appointments, I did really find these tests useful though as you found rather tiring to go through.

Take care

Greg

 

[Daffodil]

Clare

I have shared on here somewhere my experience  of my neuro pysch testing ( wanting to answer banana for a lot of things was not ideal) but like others I found it invaluable to have done if exhausting.

 

I then met with my assessor to get a detailed view on the findings but had to take my MIL otherwise I would have forgotten most and anyway couldn't manage journey on my own back then but I did receive a lengthy report too.

 

I had a six session course follow up to learn coping skills and tips at my treating hospital as well but the insights helped me get a realistic plan in place for work which meant that here I am down the line holding down a pretty complex role , albeit a different one to that I did before , but one which I enjoy find purposeful and which is tailored to my working style and capacity.

 

Having the insights meant I could work with my work to return successfully and continue working in a sustainable way. It's been a bumpy road, it continues to be but understanding my deficits has helped me adapt, not always accept but at least to understand and keep moving forward.

 

And yes, look up, those stars are always shining, he's a wise chap our Macca 

[kpaggett]

I had the neuropsych. testing done too early.  If you need it to evaluate returning to work, that is one thing, but if it is just for your curiosity, I suggest you wait until 18-24 monthss. post SAH.  Otherwise it can be really upsetting.

 

We already know that we have deficits.  You can feel them right now.  The IQ score was crazy for me early on...it was like I was boarder line developmentally disabled.  Now I am not, but at the time, it seemed devastating to get that kind of news.

 

The other reason to go to a neuropsychologist is for brain therapy.  That is so worth your time at any point.  I really benefited from that right away.

 

Have a good recovery.

~Kris

 

 

[Greg 21.01.15]

I had a session with my OT from Headway last week, and she left some information sheets with me, one of which was on executive skills. Often impacted post SAH due to the impact on our frontal lobes. Anyway, one bit that I thought was particularly interesting was the bit I quote below as it pertains to formal tests:

 

"Hidden problems more noticeable in unstructured situations. Problems with executive skills tend to show themselves in unstructured situations. Therefore the problems are not easily observed in formal tests, which provide a structure. The problems appear variable, since the complexity, novelty and around of structure provided in any given task also varies with the situation"

 

Neuropsych testing looks at a whole spectrum of different cognitive functions, and executive skills is just one part of it, so I'm not discounting the huge value of the testing (and as Kris highlights at an appropriate time in one's recovery), but for some of the more subtle issues with executive skills things aren't always as straight forward as test results my suggest.

 

For me, it helps explain why some tests have me as OK, but some day to day and especially work related activities really do my head in!

 

Hope folks find this helpful

 

Happy Tuesday!

 

greg

[Daffodil]

Greg, you are right, I have executive dysfunction show quite significantly amongst some other cognitive defects and which to be honest makes me laugh as a title but it shows up so much when I enter a situation where I cannot manage to bring my ' coping ' techniques to bear and the lack of structure then trips me.

 

When that happens it's like someone has flicked up the dial on my battery power useage and I run down energy and cognitive attention quick and hit empty fast, it's not pretty. 

 

Hubby and I are better at realising and whereas I used to be the centre of things and love that kind of chaos I now tend to hang in the periphery dipping in and out, ready to hit the road if needed.

 

I hope it will still improve but there are many , often social situations where my senses maybe are being overloaded that I just cannot cope with and it will have an effect so often choose to opt out in advance. 

[ClareM]

Interesting reading Greg. My neuropsychologist has said after I complete the test they may not show much deficiency but that it is flawed. This is because it depends where I was before the bleed. If I had very high functioning levels before, any drop now may not seem so bad on the scales.

 

We have completed several tests over the last 2 weeks and will finish them next week with memory and executive dysfunction. After that we will have a feedback session followed by a session on coping mechanisms. All told I am very pleased with the way the tests have been carried out.

 

The neuropsych knows I have to work after so leaves a good break for me to get into work without being rushed and stressed. Luckily it is in the same building - a very big Super Hospital (their name not mine), so I do not have to go far.

 

Had a melt down last week at work due to 2 days of intense pressure, luckily the Wednesday off helped and I was able to go back on the Thursday feeling refreshed. Makes me realise the wisdom of negotiating the Weds off in my new job.

 

I'll keep you all posted.

Clare xx

[Greg 21.01.15]

Clare

 

Glad that the testing is going well, and they are being really considerate in the way they are spreading it out for you.

You make a really good point, very few of us will have undertaken these test pre our SAH so a true baseline comparison is really hard to make.

 

I don't quite understand how, but there is part of the tests that apparently allows them to estimate a calibration point to give a good indication of where you were generally pre SAH ,so that you can get an idea of the degree of impact. (I'm not sure if this is for all or just certain parts of the tests, it wasn't explained to me very clearly).

 

Sorry to hear last week wasn't good, it can be a bit of a roller coaster ride at times, good luck with the rest of the tests, let us all know how you get on.

 

All the best

 

greg 

[Daffodil]

Just to add a pretty useful link which explains some of the executive dysfunction that Greg, I and others have and has been mentioned on this post http://healthdiary.pw/?p=354

[Winb143]

Daffs,

I remember seeing my Nuero Surgeon and I thanked him for saving my life this was 2 years after op.  Now when I get nervy I talk 10 to the dozen and I was nervous having an MRI as I couldn't remember the other X Rays I had.

 

Anyway I was sitting there nervy and chatting away lol and he spoke to my husband and said "has your wife always spoke a lot" so I interrupted and said "When you are the youngest of 10 it is the only way you can get a word in" he smiled and bet he wrote chatterbox xx

 

It is annoying when the brain goes blank though and I say to my hubby what's his name about a singer and he cannot remember, so I tell him "Ah cognitive skills " !!  xxxx

 

[Gemma B-B]

Thank you for keeping us updated Clare. The neuro tests are always interesting. I have sat two lots at the hospital and also done some in rehab. Interestingly I tend to perform much worse in the tests then what I do in day to day life.

 

My OT was always surprised with my poor results in terms of speed of thought when I have managed to go back into work and teach lessons. I think this is maybe because my job is very structured with a lot of routine so perhaps I find that easier to cope with then some of the new things in the tests.

 

I tend to see evidence of the executive dysfunction in the silliest situations - for example not be able to pick out a face wash in the shops if the one I usually buy is not in stock! 

 

I think they do try and measure you against what you were like beforehand - my reports talk about how I have 'severe deficits based upon pre-morbid estimates'. I think they based what I was like before on my educational background and the job I did.

 

I know in the hospital my husband and parents were asked about my qualifications and other tests I had sat before I had the haemorrhage.

 

I hope the final lot of testing goes well for you and the results help you plan things out. Keep us posted xxx

 

 

[Jan]

I have just come across these posts regarding neuro psychology testing.

 

Please excuse my ignorance on this subject, I have a couple of questions,

Are the tests offered to all SAH patients/survivors?

are you tested at the hospital that treated the SAH?

 

From what Ive read above the tests would give us a better understanding of how the brain has been affected.

 

I know that I, for one, don't understand enough and take it for granted I.e I get up every morning and expect my brain to function, perhaps not as well as it used to but enough to get me through that day  It would be good to know how to deal with the frustrations when it doesn't quite keep up

 

Jan xx

[Daffodil]

Jan. I think this is where the regional variations in care and neurological services can show up differently not to mention to across the pond. 

 

Quote

3 hours ago, Jan said:

 

Please excuse my ignorance on this subject, I have a couple of questions,

Are the tests offered to all SAH patients/survivors?

are you tested at the hospital that treated the SAH?

 

 

does everyone get them? No I don't think so and it can depend on severity and grade of bleed as well I understand but typically your would be seen at your treating hospital but the Neurophyscology team, so if there isn't one there then you would need to be referred to a centre where there is one.  

 

Another option in the UK if you haven't been referred is to also ask Headway for help. They often have community brain injury advisors who can assess where you are struggling and help you come up with a plan to make adjustments and adapt.

 

In the US I think it's a case of you can get all of this and more if your insurance covers it. 

 

My understanding is that if during the recovery it becomes apparent there are significant cognitive changes becoming apparent which are affecting or impeding an individual to maybe resuming independent living , affecting day to day tasks or Get back to work duties.

 

Then often the consulting team/ neurological team including nurse advisors in my case may decide that a Neuorlogical psychological assessment would be of benefit and completed so it's not done in every case and it's seems to be probably less than 50% if we use BTG as a representative  sample. 

 

Testing allows  them to plot where the defects are using a baseline calculated from your previous estimated cognitive functions based on things including education, type of work etc. 

 

In in my case the tests meant I was then referred for a series of group workshop to help individuals affect psychologically and emotionally including things like thinking skills and changed mood and emotions but more importantly it was shared with my Occupational Health team at work  with my permission so we could create a tailored return which set me up for more chance of a successful working pattern. 

 

All the the above is based on my own experiences, others may know more or correct me if wrong in my assumptions 

[Jan]

Thank you so much for taking the time to reply to my post ?

You have made it much clearer and given me a few options to consider.

I seem to be going through a 1 step forward 2 steps back phase both physically and mentally/emotionally, or is this just normal during recovery? Im 1year post SAH?

 

Jan xx

[Gemma B-B]

Hi Jan,

 

As Daffodil has said I think it depend on where you are and how severe your bleed was. I was treated in a specialist neuro hospital and I think that definitely helped in terms of accessing those sorts of resources.

 

 I sat my first lot of tests as an in-patient  - I know this was because I was showing signs of cognitive damage whilst I was in the hospital and I had a severe bleed and had been on life support for a while, so they were pretty sure there had been some damage done.

 

I then sat some a couple of months later to see if there was an improvement. It was probably more useful to me the second time around because then I could engage with the results and that was useful in helping me see where my issues lay and then I could focus on them in rehab.

 

Good luck with everything.

Gemma x  

[Greg 21.01.15]

Hi Jan

 

I get the feeling besides some understandable variation due to severity of bleed, there is quite a degree of regional variation. Addenbrookes where I was treated seemed to be going through a bit of a hiatus in terms of linking neuro patients to the appropriate follow up support services.

 

All the things we got we had to either fight for or arrange ourselves, we weren't even told about Headway. I was discharged kind of assuming that within a few months that more or less things would be back to normal as no one said otherwise.

 

Things that we accessed for support and testing included a local GP based neuro community support team, BUPA for neuro psych testing (I have this through work), and eventually the NHS neuro psych. Separate to all of this I have been working with an OT from Headway, who is an absolute star and life saver for me. 
 

I managed to get the NHS neuro psych testing by getting this arranged through my consultant, and as I mentioned further up the post, for me, this was really helpful, and helps my OT understand which areas we need to work on.

 

Good luck, persist till to get the support you feel you need. Knowledge is power, an old and obvious quote, but so true, 

 

All the best

 

Greg.

[the quine]

Hi, following this post with interest - can I please ask, did you need to get a referral from your GP for neuro testing or for support from Headway? Is this the only route?