Latest hospital appointment for beth - Not good this time at all

[Skywalker]

Following on from THIS thread

Today saw a check up on Beth and her medication and all is not good . Basically the high dose of drugs she is on is not working at all

To cut a long post short the main man there saw her have a fit where it grounded her to the floor and luckily I caught her in my arms and with this in mind now they have seen how bad they are there talking about brain surgery as her epilepsy is so complex and un-controlable . An operation for her condition on the brain has not been performed in the united kingdom yet and is looking like the only outcome to control her fits .

There could be bad side affects and high risk involved depending on where the tubour is on her brain that is causeing the fits . The worring thing is that this is just for one of them as we found out today there are several

Absolutely gutted again like I was in the 1st post as something like this is such a hard choice to make and im feeling angry all over again as there is not really anything I can do once again

 

[Skywalker]

Was this present from birth?

The fits yes but wasnt until THIS trip to hospital


We kept telling the doctors about the fits and was told she would grow out of them

 

[Skywalker]

Then you should have gone elsewhere to seek treatment\diagnosis for your daughter. (yes I know its easy to say in hindsight)

You dont think we did

4 different doctors and 2 widwifes , It wasnt till that last link where she was in hospital they agreed something wasnt right and arranged the ecg scan that showed something wrong and then came the MRI

 

[Skywalker]

A little more detail as I have calmed down a bit , There looking at cutting away part of the brain as they cant just remove the tubour and this is where it gets bad. There are several there and they have no idea which is causing the fits and which is causing the other problems (there is a few) .

If in a bad place so to speak it could have very bad side affects and this is where the choice is ours - Worse case from my point of view is let her carry on as she is or the bit they need to cut away could turn her into a vegtable . I might be slightly off here I really dont have any idea but worse case always plays in your mind.

The other worrying thing for me is that no one in the uk has operated brain surgery on a tuber sclerosis patient before

 

[Skywalker]

Sorry to hear about this.

Hopefully they find her a remedy very soon.

Im affraid there is no cure for her condition as whole just do what can be done to help her cope with it thats all

 

[Skywalker]

All NHS? Look, I'm trying to ascertain what happened, if you get offended by me asking questions, you don't have to answer them.

Yes , Wouldnt know where else to go to be perfectly honest

I was under the impression that the UK had many successful brain ops under its belt re curing epilepsy, etc. This must be so gutting and upsetting for you mate. I hope your next post re Beth is an uplifting and positive one.

The epilepsy is not the problem its her overal condition that is causing the epilepsy , If only it was that simple

 

[Skywalker]

Thank you one and all for your comments its greatly appreciated

Im sure you have tried this, but have you looked on the net for what the operation will involve, and where the best place in the world is to have it?

Im asking because (and im sorry to keep harping on about him) the child I look after is more than likely going to have brain surgery in the summer next year to help his epilepsy, abnormal/uncontrollable movements, and the pain he gets from all this. The best place in the country to have this type of operation is somewhat mercifuly right here where we live in Bristol.

Im not sure what Beths operation will involve, but I would do some research for yourself (if you have the name of the operation) and find out if they do do it in this country. Please dont for one second believe everything the doctors tell you, they always give you the worst case, and quite often have no idea of what else is going on in the country. Can you get a referral for Great Ormond street?

The child I look afters Mum usually ends up finding most things out via the internet, about alternatives to stuff, and/or the best place to have it.

Again (and im sure you have) have you contacted http://www.tuberous-sclerosis.org/ to see what advice they have, they must have other parents who have had similar experiences etc.

Sorry if you feel I am interfering or going on, please tell me to shut up if you want to. Again I am happy to help if I can.


Big hugs and kisses to Beth, you and your wife
x

From what I have read the best place is in USA as they have carried out 2 operations and the first in the UK is happening in early next year

We have been refered to kings college hospital which we have been told is the best place in the country to deal with this

We have been on the TS site since april and is very good and full of info