A new beginning?

I'm back. Sorry for the absence of me wittering on, I have been in hospital for a week - followed by at home mostly lying down with a post Lumbar Puncture headache for another week. Such fun. Life is never dull here in sunny Sidmouth!

Good to be home, I missed my little man sooooo much when I was in hospital, and he has been incredible, so good, i'm very proud of him and love him all the world.

Well, I went into hospital with a headache..the mother of all headaches. This has happened occassionally with the Sagittal sinus thrombosis, but this time as I was having some rather worrying stroke like symptoms I thought it best to call the doc. I was obviously worried the clot had moved or grown - and I was in so much pain. He arranged for me to go straight in and there I stayed for a week and many blood tests, ecg's, scans a lumbar puncture and plenty of pain killers later I was finally set free - to come back to clinic to discuss results with my neurologist the following week.

Yesterday afternoon bubs and I set out to Exeter in the rare sweltering summer heat to try and find an even rarer parking space close to the Royal Devon and Exeter Hospital for my Neurology clinic appointment. Amazingly we find one and so still have plently of time to fit in three trips to the toilet and a drink ( such is life with a four year old!) My Consultant calls me in as we are coming out of the toilet for the fourth time and a comical handshaking routine with Sam ensues. I am thinking, 'this is all a bit surreal, what is going to happen next'? Well, what happens next is he tells me that my clot has gone, and I don't believe it so he shows me the scans.. it's gone. I get emotional, he wells up a bit too (bless him) 'It's very positive isn't Sara'? he says..

November 2006, Rushed into A&E at Gloucester Royal Hospital, the clot was found, Sagittal Sinus Thrombosis eventually diagnosed after consulting with Frenchay Bristol.I was discharged after two weeks with no advice on how to manage the condition,or the damage it had caused.. just told it would probably disperse in about six months. Now it's seven years later and I have had to learn along the way that it would cause constant headaches and has caused memory loss and affected my use of words , affected my vision, weakened my right side, and more..no doctor told me any of that in Gloucester, in the beginning.

I am thankful that from mid 2007 I have had a wonderful Neurologist at the Royal Devon and Exeter Hospital when I Moved back home to Devon.
I understand from him that I will always have headaches, I am on medication to try and manage this, I am also high risk for thrombosis so will have to remain on warfarin. The memory loss etc cannot be reversed ..so little man is stuck with his forgetful mum - but at least he has a new beginning with her now. No more ticking time bomb :-)

Stockings and heat...

Hello, sorry it's been a few days, however I am writing this lying on my bed, in The Royal Devon and Exeter hospital. It has been an interesting few days..well, that's one way to describe it!

As you know, I have an ongoing Sagittal Sinus Thrombosis, and this can cause problems from time to time. It carries a risk of stroke and other neurological complications.Last week my symptoms prompted my GP to send me straight to Hospital to be seen, and im still here. It is very hot in here, especially in my sexy support stockings, and i'm a bit fed up. I'm to have a Lumbar Puncture..so not looking forward to that!

Hey ho! 

Bedtime Battles and Custard..

My little man is going through a 'bedtime battle' stage ( at least I hope it's a stage) nearly 10 o'clock last night by the time he settled. Sam used to be so good at bedtime, from the time he started sleeping through 'til a few months ago - he was brilliant. People used to tell me how lucky I was.. and now he just won't settle on his own, and is very clingy too. It's becoming very tiring, and trying to stay calm is very trying! Perseverance...

We came downstairs this morning and bubs turns to me and says, 'Mum, can I have custard for breakfast?' hmmmm.

So, it's July then, nearly halfway through the year already. Scary. Sam starts School in September and I just can't believe where the years have gone, my little baby boy has grown up so fast. I intend to treasure every moment with him while I can, life is precious.

Still got weird vision and an ever increasing headache. I don't think being overtired helps, but what can I do? Unfortunately tiredness seems to affect both conditions badly - and stress. I see my Neurologist in a couple of weeks, I see him for both the Charcot Marie Tooth and The Sagittal Sinus Thrombosis, my memory has got so bad ( because of the Thrombosis) I am compiling a list of things I need to talk to him about. Hope he's ready for me!!

Right, that washing wont get itself on the line.... ;-)