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

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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

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HeX

HeX

Soldato
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Gutting. Honestly, my heart goes out to you.

I have two young girls myself (2 1/2 and a 1 1/2 year old) and I honestly don't know what i'd do if I found out they had something like that :(

Man, I feel bad enough when they get a cold and theres nothing I can do, never mind something involving brain surgery!


I wish you and your daughter all the best, and hope something can be done for her.
 
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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 :rolleyes:

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
 
Soldato
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You dont think we did :rolleyes:

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

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.
 
Soldato
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That must be absolutely crushing :(! Although I have absolutely no idea what you're going through, my thoughts genuinely go out to you.

I hope the next move will bring some more positive news. Best of luck to her.
 
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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
 
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I was under the impression that the UK had many successful brain ops under its belt re curing epilepsy, etc but this must be the next stage on really. This must be so gutting and upsetting for you mate. I hope your next post re Beth is an uplifting and positive one.
 
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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
 
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