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MRI Scan for (Asperger's?) DS, now finally achieved! But what does report actually mean..?

(34 Posts)
phoebus Fri 05-Oct-12 12:38:17

I've been really keen for ages to obtain an MRI scan for DS (8), to try to confirm (or rule out) his AS diagnosis - as I have long wondered if it was really a misdiagnosed birth injury. Well, hooray, we now have finally got a result, following the scan. Trouble is, I don't really understand the report! - and it's currently proving hard to contact the consultant for more detailed clarification on it. I'll be going to see our GP to discuss it with him, but rather doubt that he'll be able to cast much more light on it, as it's such a very specialised area of neurology.

The report says (thankfully) that everything seems normally developed, with no signs of brain injury. The only thing that the consultant did pick out, was this:

'There is mild prominence of the cerebellar tonsils, but not of a degree of result of a Chiari 1'.

Now I've been googling madly to find out all about 'Chiari 1' (which DS doesn't apparently actually have, but there must be some reason why this was mentioned.....!)

Is there anyone out there who is in the know about any potential links between Aspergers/autism and Chiari 1, or tendencies towards that condition? Does this 'mild prominence of the cerebellar tonsils' indicate that DS IS more likely to have Aspergers?

Any insights or wisdom from anyone who can cast any light on this would be most gratefully received! (I have faith that someone, somewhere, may have been here already......)

iluvmababyz Thu 25-Oct-12 16:10:41

hi just got my appointment 18th january sad (RVI newcastle)

my gp has wrote a letter to try and get me a sooner appointment

ive been suffering from a lot of dizziness and feeling sick along with my headache so just got some tablets today to help with dizziness ive tried a few things just to help me until i see neurologist

thanks again smile

MotherJack Sun 21-Oct-12 23:53:16

Hi iluvma smile

The pain you have is almost certainly because of it. I could tell you loads, but it is quite complicated.... it took me ages to understand it... but I do now. Do you have an appointment with a neuro yet??

iluvmababyz Sat 20-Oct-12 23:27:44

hi motherjack thanks for your reply

all i know is i have had terrible headaches everyday for last 10 months with dizzyness gp thought it was from worry but as painkillers didnt work they decided to send me for an mri and was diagnoses with chiari 1

i dont know anything about it and neither do my gps but they seemed to think that these constant headaches/migraine must be because of it xx

MotherJack Thu 18-Oct-12 23:33:26

Hi iluvmababyz.

If you have a Chiari Malformation it is unlikely you are suffering from migraines. It is pain and pressure caused by the malformation as it obstructs the flow of cerebro-spinal fluid, so basically the fluid gets stuck in either your spine or your head and it hurts because it is under pressure. A Chiari malformation is like a plug.

GPs know bog all about Chiari. I have a lot of experience to be able to say this, and a lot of acquaintances who will back me up. Some neurologists know more about it than others. To relieve the pressure headaches, they need to get the fluid flowing again and so perform a surgery known as "decompression".

If you want support I can put you in touch with a number of online groups

xx

phoebus Tue 16-Oct-12 22:20:07

Hi there, thanks for sharing this. Really sorry to hear what you have been going through. It's hard enough having a little one you are concerned about, let alone trying to care for them through a haze of pain and dizziness. Poor you, I hope it quickly gets sorted out for you.

I have had bad headaches throughout my life, and as I've got older they've got worse ... a couple of times a month, generally, but not as often (or probably as bad) as yours. I think they are like migraines, and actually I've got one at the moment ... but may have managed to head it off with Imigran (sumatriptan) which was prescribed for me fairly recently, and can do the trick if I take a double dose early enough. The recent report on DS's scan has now got me wondering whether I too may have something like Chiari 1 (or a tendency towards it) which could be behind my headaches, hence possibly something hereditary.....maybe I should have a scan too! From all my recent googling, I gather that there is an operation to relieve pressure in a Chiari 1, but don't know whether it is recommended etc. I think there may be other MNetters who know much more about Chiari 1 than I do - perhaps they will post to advise you further.....

Anyway, all the best and I hope you also soon get helpful answers to your DD2s assessment There is quite a bit of help on offer if she does get the diagnosis. After the age of 3 I think, they can get DLA for an ASD diagnosis. That has certainly been a great help to DS, and I now get CA as well - all unexpected, but welcome.

iluvmababyz Tue 16-Oct-12 20:28:07

hi there

my dd2 (2.5) is nearing the end of her asd assessment (should have diagnosis in 4 weeks)

i have been suffering severe headaches for the last 10 months (every day)with dizziness. my gp thought it was stress related with worrying about dd but decided to send me for an MRI. i only receieved my results yesterday and i have been diagnosed with chiari malformation type 1.

my 2 gps have never seen it before so i have to wait to see a neurologist - which i am hoping ill get some kind of medication for my migraine as my gp doesnt know what to give me.

i also saw my daughters paediatrician consultant yesterday and she didnt think it would be related to dds autism but it will be something that i will be asking.

phoebus Mon 15-Oct-12 13:07:31

Thanks MotherJack smile I got your PM and have replied.....

MotherJack Sun 14-Oct-12 22:42:29

Phoebus - very late to this so you might not perhaps see.

Symptoms of chiari are not necessarily related to cerebellar tonsil descent. It is very individual. Any neurosurgeon saying that a small descent of any kind does not mean chiari knows very little about chiari. It is relatively new to NS's in the UK and they may sound like they know what they are talking about but many don't.

My son has chiari and I know of many children up and down the UK and most of them share one thing in common aside from a cerebellar tonsil descent and that is ASD tendencies.

In fact, I will PM you in the hope you will see this...

phoebus Mon 08-Oct-12 09:26:48

Yes, it's a condition that can also bestow extraordinary gifts on some individuals - as I'm always telling DS! I've given him the book by Jennifer Elder, 'Different Like Me - My book of autism heroes' which is very encouraging and highlights the fact that it isn't all bad, and different isn't necessarily 'worse'. Some well-known examples in there.......

sneezecakesmum Sun 07-Oct-12 21:11:00

Probably right. Einstein probably had AS!

phoebus Sun 07-Oct-12 12:36:32

Hi smile it's good to air and explore all these questions, imo. I am all for lots more research and funding into ASD as it is such a life-impacting condition for everyone who is touched by it, especially when it's severe.

Also there is apparently a significant increase in occurrence of it nowadays, for whatever reasons (see thought-provoking article 'The Geek Syndrome' on this website (hope this link works): www.wired.com/wired/archive/9.12/aspergers_pr.html

Sneezecakesmama Sun 07-Oct-12 10:06:35

Phoebus. I wasn't commenting on individual cases, just saying generally scans and investigations don't achieve much. I know of a couple of mums with CP children who don't push for MRIs as it won't change anything. They did not have any issues re negligence or injury (prem births) so your choice imo was quite right.

Head injuries especially if severe can cause lasting personality changes. I did read some article which showed it was often the case with HIs. After all severe head injuries cause physical swelling of the brain which in definitely not a good thing. Also newborns with prolonged low blood sugar can suffer brain injury and illness may affect blood sugar.

If MRI imaging improves (which it no doubt will) then it makes sense to look for recurring anomalies linked with ASD

phoebus Sun 07-Oct-12 09:06:52

These latest points ilikemysleep and sneezecakesmama, are completely valid - I agree that generally, MRI scans for autism alone are not in themselves advisable or desirable, as they do stress the child, and whatever the results may be, they may well not change the treatment outcomes at all and cannot offer hope or prospect of a 'cure' (unless they show up something unexpected eg. a tumour). However, what could be relevant one day is that, once the new research is fully tested, it could - speaking from experience - save years of uncertainty and cost (and indeed stress) in going round all the different specialists (paediatricians, OT, EP, SALT etc) trying to get a dx, as the new science might be able to give a 'hard' answer in a few minutes, rather than years. We also felt we owed it to our DS to try to find a clear answer as his AS is borderline and not typical. After all it's his dx and he will have to live with it his whole life: we might as well be as sure as we can be as to exactly what it is....

We had strong reasons for requesting the MRI, it wasn't just a whim. DS had had a traumatic head injury by accident when very young and we wanted to know if that was an underlying issue. Also as he'd had a hugely poorly managed, prolonged birth with complications, and needed SCBU for days afterwards, there was also a possibility of future negligence litigation depending on the findings. So in our case the MRI was necessary. It's not something I would advise most parents to go for without very good reason.

Sneezecakesmama Sat 06-Oct-12 22:00:30

As an ex-NHS insider......pester the secretary, DS is still under the consultant unless discharged...that's your cover story grin worth a go.

Likemysleep it's a very good point that brain scans are useless for ASD and even cerebral palsy. If a baby has a traumatic delivery and goes on to develop CP a scan alters nothing, changes no therapies and stresses the child. Even identifying the area of damage and extent of injury is irrelevant as sometimes severe injury shows in a mildly affected child and vice versa. The only relevance is if a tumour etc is suspected.

Once it's been done though a thorough debrief is only fair.

ilikemysleep Sat 06-Oct-12 21:39:29

used not sued

ilikemysleep Sat 06-Oct-12 21:39:09

I mean...as I don't think I am making myself very clear - we see a higher proportion of kids who as newborns or very young babies had a serious illness such as meningitis. So one might guess that their autism was caused by the brain injury they suffered then. But they are still autistic and the methods sued to support them are still the same...whatever caused the autism...

ilikemysleep Sat 06-Oct-12 21:36:56

The problem with all this is that autism is not a single condition, like measles is for instance. It's a cluster of behaviours diagnosed by judgement and there are all sorts of causes that can result on 'autistic behaviours' - for example, correlations with learning difficulties, higher incidence in certain genetic conditions such as fragile X, known to be caused by mistakes on certain chromosomes such as chromosome 9- but those behaviours can even be pretty well reproduced by putting a baby in a cot and ignoring it except for feeds - (not suggesting anyone has done this. just illustrating that there isn't any single 'cause' because there isn't a single 'condition')- like with the Romainian orphans for instance. That is why there is such a massive range of 'treatment options' and some produce stellar results for a few kids and do nothing for others. They are usually reluctant to do MRIs for 'straightforward' autism because - let's say Dr Ecker is correct and a brain scan confirms a subtley altered volume of grey vs white matter in your DS, for example, it just confirms what you already knew - he's autistic. Even if there was a sign of a former bleed, I don't see how that would stop your DS from being autistic or change the methods used to support him? I just don't really get it.

phoebus Sat 06-Oct-12 20:57:34

Hi again (sorry, been away....) - Just to catch up a bit: lisad123 to answer your question: - With enormous difficulty! Fortunately we have a sympathetic GP who did make the referral, as there were substantial reasons to do so. But if one has the option to go privately, I'm sure it would be a much simpler and less painful process (but £££s too). It took us forever; months of waiting, and I had to be on the case the whole time to make sure things actually got done - (letters written but not sent or received, etc) and as you can see, I am still struggling to get full and satisfying feedback!

YYY Sneezecake, pestering the consultant's secretary is top of my to-do list grin but as an NHS patient I gather they do not usually communicate directly with the patients and it is all supposed to go (laboriously) back via the GP. I can only hope he will be kind and give me a few minutes of his precious time for a discussion of the salient points.

Interesting re: MRIs and diagnostics with ASD: I've found Dr Ecker's articles illuminating as she is exploring the actual subtle physical differences between the AS brain vs the 'normal', through very specific and fine-tuned MRIs /analysis that go to a whole different level. There does seem to be a significant and measurable difference in the relative volumes of grey as opposed to white matter between the 2 kinds of brains. As shazian says the Temple Grandin brain example also indicates some differences.

My DS had a general anaesthetic for the scan: not pleasant for him, (or me) as he reacted badly to the gas..... but I can't imagine he'd have coped at all if he'd been awake. Movement during a scan would also compromise the quality of the images I think.

ArthurPewty Sat 06-Oct-12 19:25:31

Message withdrawn at poster's request.

Sneezecakesmama Sat 06-Oct-12 12:56:05

Leoni. I think the way forward with MRIs and diagnostic testing, would be to look at a real time MRI image of the areas which light up during processing. Now getting an autistic child to cooperate inside an MRI scanner would be fun ! Interesting but very challenging grin

ArthurPewty Sat 06-Oct-12 10:46:35

Message withdrawn at poster's request.

sneezecakesmum Fri 05-Oct-12 21:24:02

re MRI images and ASD. I wonder if this new research shows how the brain processes information rather than any actual brain malformation? That makes more sense as it is possible with MRI scanning to show the former. To the best of my knowledge AS etc wont show anything on a still MRI image, and this report is obviously just a 'picture' of the brains structure.

Unless there a multiple similar reports reported in cases of AS of the cerebellar tonsils being slightly enlarged (sorry dont know if this is the case) it is probably just a slight anomaly which will be within normal limits.

Try to make an appt with the consultant to discuss the results. His secretary can usually be nagged into giving you an appointment grin

shazian Fri 05-Oct-12 18:53:12

Hiya as Phoebus said there is new research going on to give improved brain images to show ASD. Im no use at doing links on computer however if you google Temple Grandins unique brain it may give you an idea of brain of someone with ASD quite scarey really it shows normal image and image of Temples brain she has aspergers, hope this helps x

shazian Fri 05-Oct-12 18:52:42

Hiya as Phoebus said there is new research going on to give improved brain images to show ASD. Im no use at doing links on computer however if you google Temple Grandins unique brain it may give you an idea of brain of someone with ASD quite scarey really it shows normal image and image of Temples brain she has aspergers, hope this helps x

HecateHarshPants Fri 05-Oct-12 17:14:08

Thanks. Will have a look through that.

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