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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......)

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.......

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 15-Oct-12 13:07:31

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

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 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.

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


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 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 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

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