Hi James
 
I have tried your suggestion but unfortunately without success. Have tried to access via our main laptop (fairly new) an older one and via both Rachael's and my phones all with the same result. Can you think of anything else?
 
Many thanks
 
Stefan

Hi

Sorry to hear little one is going through this but glad things are moving forward.

My daughter was 14 when she was operated on (also at Alder Hey) so it was a bit different for her (because of her age) but Shanco, Victoria and Katie have all had young ones go through surgery and I am sure that they will come along soon with some advice.

Natalie was off school for 6 weeks and she had a bit off a rough time after surgery as she was readmitted  4 weeks later - but that was in a way because the surgery was successful.You can read her story here (I hope this works) http://chiariblog.co.uk/taxonomy/term/3 (there are lots of other stories too)

Do you know who will be doing the surgery ? Natalie's surgeon was Neil Buxton and she has her last scan at Alder Hey on 1st October followed by an appointment the same day before she transfers over to adult services at Walton

Fingers crossed all goes well

AM x

I think I have always had the whoosing. I am concerned about the pulse as Dr Google (I know...stay away) says it is to do with flow and pressure.  I have emailed my NS and he is going to investigate more when I see him at the end of the month.
I have also had very strange pounding in the middle of the night, it feels like a big hangover headache.

Slow down lady! I am pleased you are feeling good, we must do coffee soon.

Earthquake-Auckland is not affected. They are on different islands. It is all very frightening as it was always thought a big one would hit Wellington. I don't know about Skye but we are prepared for the worst now after this.

Yes, I get it. I have put it down to -
Raynaud's phenomenon.
I haven't been diagnosed but Dr Google makes sense.

Hi,


welcome to the team :-) I don't have any experience with children personally but from what I have read on here they are better patients than us adults! You'll get lots of amazing advice on here! Just wanted to welcome you


Take Care and lots of well wishes to Koby


Jade

What great news Skye!!! I'm so glad it seems to have been a success for you and that you are recovering so well and so quickly; please please please don't overdo it too soon though!
 
Ali xxx

After reading posts I can't find any other nans on here.
 
My daughter has 2 boys Koby her eldest a 2 yr old. She recently found out she Is also 10 weeks pregnant. Koby had some problems when he was born, within 24 hour of his birth he suffered a stroke caused by a blood clot. He had an MRI and a lumber puncture at the time. Koby has progressed like any normal 4 yr old just having regular check ups. About 6 months ago he started complaining or headaches, after many visits too her GP coming away with paracetamol and a diagnosis of It's viral (personally I think that word Is code for haven't got a clue) she saw a locum doc who actually took the time to read Koby's notes. He referred Koby back to the hospital. The consultant wanted another MRI to check the headaches were not related to the stroke. Last week she got a phone call to take Koby to Alder Hey Hospital to see a nureologist. I went with them, we were shown the scan results and the consultant explained that Koby had a chiari and needed surgery. He did tell us basics about It but no detail. He also said Koby would need a lot of help while he recovered, The surgey Is urgent and will take place within the next 8 weeks. After searching the Internet we realised that Koby had actually had symptoms for about 2 yrs. I guess what I am wondering Is what sort of problems should we expect after the op. I am having a week of work to look after the younger one and to sit with Koby to give his mum a break. But will 1 week be enough. The boy's dad Is on the scene but a once a week dad on a sunday. Kerry does have a partner who Is fantastic with them and they love him to bit's. That's It for now I think don't want to bore u with to much Info. Any help on sort of things Koby may go through will be much apreciated.
 
From a worried nanny.

Hi guys, hope you're all doing okay.

I thought it was about time I dropped in and said hi again, although I've been keeping up with everyone else's news even if I haven't been posting.

I was scheduled for surgery on the 26th of July which was cancelled on the 19th with no explanation. Six or more answerphone messages brings us today where I finally got to speak to a human being who said switchboard must have been putting me through to the wrong extension for the last 2 months. I'm a little dubious on that one but there we go. She phoned me back after lunch and informed me that the brain side of the neurosurgery unit in swansea has been closed as of this week and my surgeon had taken the decision in July - when it became clear that this was going to happen - to wait until all care was transferred to the NS unit in Cardiff before operating on me. I'm glad of the information but feel after two months of utter desperation and depression that this is something they could have told me when they cancelled. I've now been told I should have a new date for surgery some time within the next 4 weeks - I'm desperately hoping it's this side of christmas. To add insult to injury, the stress has led to me growing a lovely thing on my arm that keeps getting infected and means I can't have decompression until it's gone - now paying out £650 quid for the privilege privately as doing it on the nhs would take until at least Jan to get a consultation and a further 18 weeks for treatment!

I know I'm moaning where some of you guys have had it way worse than me - you're brave woman Marina! - but, d'you ever get the feeling it's just not your year?

Hugs to you all, take care,

Caz

can anyone tell me how they diagnose a csf flow block.. in uk ...they look on the spine, but do they also diagnose here as the chiari institute and others do with posterior flow block posterior to cerebellum , as there should be continuous flow from the subarachnoid space posterior to the cerebellum and cisterna magna.. i would be relay great full if someone could tell me if they only look at spine or look at posterior part of brain to.. thanx guys