My Neuropsychology appointment

[Daffodil]

Yesterday I went for a neurophsycology assessment which my neuro team referred me for and I thought I would share how that went.

My history is that I suffered a grade 4 SAH last March presented with hydrocephalus.

 

The family were given a Very poor initial prognosis for me but after surgery to place a drain and a successful coiling I did tremendously well in my recovery up until the return of the hydro meant I had a shunt placed last July.

 

Cut to now and I am on a gradual return to work and having many more good days but struggling with some cognitive issues, specifically concentration, reduction in previous depth of thinking and loss of words or misplacing words.

 

At my last neuro check up the team thought it worth this getting checked so yesterday I spent the day in London doing just that.

It was quite intense. I drank lots of water and kept my sunglasses on for most of it. It involved a lot of observation tests ( a lot of pictures of men from the 70's it seemed) and also memory ones as well.

 

Mental arithmetic was checked and then there was the logic tests and word association and ' what's missing here' pictures. It went ok I think. I couldn't do some things at all though. Guessing the shadow animal I eventually said for one ' llama' just to say something

 

Also during the test where I had to name as many animals as I could my brain kept saying ' banana' over and over.....managed to keep that to myself though so that's got to be progress.

 

The outcome will be reviewed and I get to go back in a few weeks to get results to find out if there are some things affected that I can work on so it'll be good to know for definite rather than my kids just pointing out when I say something silly in the wrong place.

 

They also mentioned they are doing a workshop for people who've had SAH so they would talk more to me about that when I go back.

 

All in all an interesting and non scary experience. Hard work. Tough doing the train there and back. Mentally tiring. But overall good. Anyone else had these tests? What was the outcome?

[Louise]

Hey there, I had tests like that when I was in the re-hab hospital then as out patient.

One I remember was pictures of concorde I had to put them in order of it was either landing or taking off yikes all muddled he!he!

 

Also had to name 10 things starting with 'A' (not a persons name or place name) in a minute - that as tough....

glad you had the tests tho they will help...

take care

[Sandi K]

Hi Daffodil! Yes I had those tests done. It took about 3 weeks for the results to be compiled and I was given a 50 page report after consultation with neuropsych.

 

I found it to be a huge relief. It helped me jump leaps and bounds into acceptance that brain had changed and I needed to stop trying to be the same as before. Of course it took several factors to truly accept changes but this was a big one.

 

Everyone is different and will have different outcomes and results. Mine showed that I miss chunks of information during conversation. I know this becomes worse with fatigue.

During meetings at work I would walk away thinking I had it all but I was missing pieces.

 

Then I thought I was crazy. The testing was a relief because it explained what was happening. I know now that I need to write the important stuff down! I appear engaged and will even respond to specific conversation but once I walk away I'll have lost some of it.

Sandi K.

[iola]

Wow, it amazing what the brain and strong will can do. I never heard if these tests. Funny how the doctors just never tell you.

Some of the folks here have had such challenges that I tell others about all the time. It's truly a miracle what some have conquered.

[goldfish.girl]

Hi Daff,

The 'banana' part of your post made me laugh! I used to keep saying 'cucumber' by mistake initially & then just as standard every time I couldn't find a word or a name

 

I was referred for neuro psych testing by my NS at almost 2 years post SAH. I found the tests exhausting too. I thought I had done really well & even felt quite cocky about the whole thing as I did them. I was very much indenial, though, apart from knowing that I was always tired & my head always hurt - I really thought that was my only change.

 

I did have a massive sweary mouthed tantrum & cried for days at the results. That doesn't mean that you will, you may well get a very nice surprise instead & score well on things you think you are not doing well at.

 

I can't quote the exact outcome without reading through the report again but the basics are: moderate - severe memory problems & executive functioning. There is more but I can't remember it all now.They are the things that stick in my mind most as they are daily challenges.

 

As Sandi said, it is a great starting point to understanding where you struggle so you can stop being so demanding of yourself when you are struggling and the key being taught skills to help you cope with any deficits that may be there.

 

Good luck with the results & look forward to hearing how you get on.

Michelle xx

[MaryB]

Hi Daff,

I had these test done a while back. Maybe at the 9 month mark or something? I cannot recall I how I did. I do have memory loss so that may be why I do not recall. I did better than I thought I would and was a bit poor in some areas but overall OK? I do however think it would be interesting now to do the test again after working and being exhausted.

 

I was thinking on my way home from work tonight that I cannot even recall people /clients that have been coming there for many years and it is disturbing to me. Worst yet when I see them a few days later and they pick up the conversation where they left off it is just disturbing as my mind is going around the block trying to figure out who they are and what they are talking about. This is my daily occurance at work.

 

So I think it is either I am better but am doing more & become more forgetful or I am worse? LOL? I cannot tell. It would be interesting to do that test after a long day.

 

I could not name animals either, count back from 100 or recall the 4 things that he said to "not forget".

Mary

[Winb143]

When I was out of it I have a memory of putting shapes into there right place.

I must have had the hump as I banged a shape I knew did not belong there and tried to force it in by bang bang !

I was a pain when out of it lol

Good luck All

Win xx

[kpaggett]

When I had those tests done, I was so MAD when I got my results...not at the actual results, but at the write-up that the neuropsychologist had done. 'Because I didn't work in a factory', it said, even though I got a 70 (that's retarded!) on the motor skills, 'it really wouldn't be an issue.'

 

I play the cello! IT WAS THE BIGGEST ISSUE FOR ME! I told the horrid doctor that and she just didn't get it. I played my cello every day. I was a music therapist. I was also a neurophysiologist and in order to do all the surgeries, you have to be very dextrous....even more so than a human surgeon as my patients had very, very small brains.

 

The actual results didn't surprise me at all...I'm not sure I would recommend doing it until at least 2years after.

~Kris

[Winb143]

What I found unfair about my test is this ~:

Who is the Prime Minister (remember I'd been out for over a year)

Tony Blair was my reply

 

Wrong, dingbats how was I supposed to know he handed it to Brown and he Gordon was not PM

anymore and we had election while I was fighting for life tut tut !!

xx xx

[kpaggett]

If someone asked me that...I would have been screwed. I didn't listen to the radio or get any news for months as it always made me cry which I was doing many times/day and didn't need another trigger that could be easily avoided.

 

And guess what...the US didn't stop existing or politicizing or doing whatever...bullying for example. The UK? forget about knowing anything about that!

~Kris

[Daffodil]

Hi. I went to the big smoke to get my results on Friday. My MIL came with me so that I didn't forget what he told me.

 

They confirmed the tests showed my short term memory and concentration levels are affected and that this would probably be exaggerated by fatigue. The rest of it was a bit woolly, nothing black or white, just lots of ' probably' 'possibly'.

 

They went on to say that it was not uncommon to see this effect in SAH survivors and often he said the impact he witnessed was quite broad rather than what you might see in a specific brain injury area where one thing or another is affected.

 

He felt that fatigue would exaggerate my deficits. We then laughed as I asked him if he would be sending me the findings in writing as I might not remember everything. He agreed that would be a good idea.

 

So sharing some suggestions as to what I already adopt or he suggested below to help with the memory , fatigue and concentration in case it helps anyone else. Oh and he is referring me to join a SAH group...I wait to see what that involves.

 

Helpful tips that we discussed.

 

Pacing daily activities

 

Earplugs in noisy situations( i use vented ones so I can still hear)

 

Sunglasses in bright lights

 

Taking time out during day to have quiet moments

 

Explaining to others that I can't do what I did...I wrote some blogs at work which has helped get the word out

 

Taking Bitesize chunks when trying things again

 

Being honest about what I can do, knowing when doing something will exhaust me and saying no

 

Listening to audio books, helped with memory, and online brain training

 

I'm sure the are loads more that helped people.

Interesting though. Glad I went as don't feel it's all imagined now

[Louise]

Well done going, and taking someone with you always a good idea.

Like me you mostly got told the same and told the dreaded fatuge makes it worse, then I think why don't they see fatuge as a problem then.

take care

[MaryB]

Great news Daffodil! My results were similar - except for word recognition and look how great I am doing!! :lol:Everything is much harder when tired. I had/have a learning disability so it has exaggerated that but with all the adjustments I have had to already make in my life I must say this SAH thing has ended up just being another.

 

I think it is riding the waves, adjusting your sails etc.. life has been that way for me and accepting that makes it much easier. Not that there are not bumps in that road and days of feeling angry etc. But in anyones life it is how you approach the challenges.

 

I see people that have such minor things going on and it is hard for me not to kick them in the pants. Or worse yet people that have faced major life and death issues and it has not changed their perspective and they look at it as "dodging the bullet".

 

Good luck and wishing you well! I know you are up for the next wave! Maryb

[Sandi K]

Excellent list Daffodil. Thank you for sharing

Sandi K.

[momo]

Hi Daffodil, this is a really good list and will be helpful to others. Its good that you went to this.

 

I had similar testing with my psychologist but I don't remember much about it except that I thought I had done really well then was disappointed when I hadn't.

 

If I could just add a few more things to the list...

 

Stressful situations, I try to avoid stress at all costs (I know this is not always possible) if there is a difficult phone call to be made for example I delegate! I can't function if I'm stressed.

 

Mornings are much better than afternoons for me so I try to do the important things in the morning.

 

Diary/organiser (written not electronic) can't get through the day without it now.

Thanks for posting this.

[Winb143]

Well done Daffs,

I cannot and never could do maths, as long as I wasn't fiddled on my change I was okay xx

 

I remember my poetry I learnt from school or from my Mum, but names !! aghhh lol (like Mary)

My Hubby said your memory has gone so I said all my familys names, sung songs, and tutted at him.

 

Good on you Daffs now did you have eats after tests ? xx yum

Love

Win xx

[kpaggett]

I totally agree with the delegation. My husband now does all the finances because I can't trust myself to do this any longer.

 

I also find that sometimes making a simple decision like what to eat for breakfast can become overwhelming for some odd reason so...For a decision, when it is apparent that it is difficult for me in the moment:

 

I Sit back on the most comfortable chair or on the ground if need be and just wait a moment...until the inability passes.

~Kris

[Daffodil]

I received my letter writing up my assessment today. A very nice missive and it talks about my processing speed having been slower and performance was lower on any task that demanded attention.

 

It talks about the assessment in tems of validating concerns and empowering my family and I so that we can minimise the impact of my deficits on my quality of life. I wanted to share a few things that I thought were useful from it.

 

1. Memory aids are useful to keep track and will help minimise difficulties with attention and concentration plus help consolidate the memory

 

2. Structured environments will minimise anxiety and reduce cognitive effects so planning well in advance, keeping a routine and pacing are all equally important

 

3. It is important to have well defined and reasonable goals so you don't get overwhelmed. Taking things one step at a time is important as slowed thinking levels can be overwhelming and create anxiety

 

4. Utilise the support of counselling services and communicate needs and concerns to family and friends so that you can increase understanding of your difficult areas and manage others expectations for you.

 

One thing I take away from this experience . Whatever our SAH legacy is we continue to have many significant strengths and if we learn about what the changes are there is no reason why we can't continue to change, adapt and progress just as we have done since we were born.

[MaryB]

Daffodil,

Thank you for sharing such good information. It sounds like your accessment went well and the results are resonable.

Mary

[sarahk67]

Here, here! That's cheered me up on an otherwise dull day.

Thank you Daffodil

[momo]

Brilliant Daff you are a wee gem for sharing this!

I totally agree change, adapt and progress.

 

I've also learned how to hide my difficulties and I've actually become quite good at this. But I do get caught out by my memory. I find its good to be frank with people so if I forget something in conversation (this happens quite a lot) I just say... sorry my memory has let me down again.

 

The more I've adapted (and accepted) the more confident I have become. I don't feel so crushed anymore.

Wish I had got my assessment in writing but I just didn't think of it.

[Sandi K]

Scheduled for my second set of neuropsych testing in a couple of weeks. This is 2 years after the first time. Can't wait to see the results! Will be interesting to see the changes.

Sandi K.

[Winb143]

Good Luck Sandi,

They gave up on me, well fancy trying to talk sense when I was in dreamland/Hydroland.

 

N/S How much do you drink", my answer was "depends on how quick hubby is drinking and if I can get a look in"

Then I shut my eyes at them and just slept. as I felt picked on.

 

Love to All

WinB143 xx xx

[Sandi K]

Had 2 days of testing two years after the first testing.

The first tests were done 1 year post NASAH. The second tests done at 3 years post NASAH.

 

First time my executive functioning (planning, organizing, decision making) came out in the low 30% range compared to others my age. This time the number came in at a whopping 95%. Great improvement!

 

Still problems with attention though. There was some improvement but not much. Neuropsych said I may continue to improve but it will be slow and I will likely always have problems in this area.

 

Selective attention: having difficulty filtering noise and distraction to select one thing to focus on.

 

Divided attention: I like Daffodil's way of saying I am now a great unitasker! Not a very good multitasker.

 

Sustained attention: I'm good for about 10 or 15 minutes and then I'm done

So I'm telling everyone I'm really smart again but can't pay attention.

 

I don't have the written report yet so I'm going from memory. Once I get the report if there is anything else interesting I will be back to share.

Sandi K.

[Daffodil]

Sandi, glad Your testing went ok. I will be interested to hear if you get any more information in your written report.

 

Congratulations on improving your Executive dysfunction! I was in giggles at yesterday's session just thinking about that as it kind of summed up me an work right now, I can just imagine me saying " I'm sorry but I can't do that report as I have executive dysfunction!" That said I think there are plenty of management that also have that without the SAH

 

Anyway to my session yesterday , it was all about moods and emotions post an SAH. The session explored that often the physical pain and symptoms that we experience is actually our body reacting to the stress of a thought or worry that we may have had.

 

Basically they explained that the worry enters our consciousness and immediately the body reacts to it releasing adrenalin which has a physical reaction, this reaction in turn reminds us of more horrible times and memories and then we have a little circle of reaction, worry, anxiety that's difficult to escape.

 

The answer apparently is to acknowledge the symptoms, the worry , the physical pain and to try and face it practically and with an open mind knowing that you have reacted to a worry rather than it being a recurrence of a medical problem.

 

I thought this interesting, the idea is that once it is passed you try and figure out what the worry was, even the smallest one can cause a reaction, and then try to allay the worry....so Win is right, stress is just no good for us.

 

I have found since my SAH that the slightest thing can heightens my senses, usually annoyingly something that previous to SAH I wouldn't have been bothered by, wouldn't even have noticed, but I then find it kicks off a physical symptom circle as my body thinks I'm under threat (and it knows that I have had big threats in the past:-D. )

 

Anyway the explanation above was quite useful to figure out that you have to face the worry. It's about retraining the body and mind I think. That's what I took away....next week depression:shocked: