Finally beths main brain scan results

Skywalker

Skywalker

Skywalker

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brighton
We had London AGAIN today for Bethanys results

We where say in a room with the best and I cannot stress this enough , the best neurologist in the country and his team for over an hour today . It went along these lines

He had studied the last MRI scan and the one from last month and his findings where that there is a large tumour at the back which is also surrounded by a bunch of smaller ones and one of these at the back of the brain is causing the epileptic fits , I asked him how many there where in total all over and his finger repeatedly pointed at the screen saying here , here , here , here , here , here and so on , But this is the one we need to talk about . Its roughly the size of a 50 pence piece .

Basically what needs to happen is they neep to do an uptodate MRI which will be in the next 2-3 months - Go NHS

They will then need to do something they call mapping as the large tumour is also surrounded by some smaller ones and this will make sure which one it is , The mapping will mean her skull will cut open and sensors will be placed all over the place and they will also be able to trigger if needed a fit to help see which it is

Then she will be put back together and wait for the results

After its brain surgery to remove part of the brain

This is where it gets bad - The fits are affecting her left arm mainly and also her left side of her face and left leg due to the tumour crossing the nerves of that area or the nerve going around it . If its going around it its much better as I will explain below

deficits from main operation (only the arm as this is the one he thinks it is)

This is the best outcome

If the nerve that controls the left arm runs around the toumour , once its removed she will be weak in the areas its affected for the rest of her life as in very slow to use them , strenth wise and co-ordination wise

The is the worst

If the nerve runs through the toumour then its a very high possibility that once removed she will be completly paralyzed from her left shoulder down for the rest of her life

That is as much as i want to say at the moment as im feeling very sad at the moment after writting this
 
Hi mate,

Not good to here when things like this happen - my wife is a paediatric nurse and she has said how hard it is on the families.

Maybe a help, when my wife needed an MRI for her epilepsy, we were told 3 months. When I got my Credit Card out, that became 2 days. £350 iirc, but £350 I could not have spent in a better way. DOn't know if you can do that or not in your case.
 
Since finding out about her condition my misses has cut her hours at work down to 1 day a week to become her carer and I have cut down to 3 days a week aswell to help . We did have money and a fair amount of it at that but we spent all we had at the time on the house with extentions etc and then found out after that so now money is no where near what it was and we simply couldnt afford even £350 at the moment :(
 
This makes me so sad :( But I'm confident that you'll get the best possible outcome and that Bethany will be in better health soon. As you said, she's getting the best treatment which she possibly can, and the things which modern medicine can achieve are amazing. Stay positive :)
 
Since finding out about her condition my misses has cut her hours at work down to 1 day a week to become her carer and I have cut down to 3 days a week aswell to help . We did have money and a fair amount of it at that but we spent all we had at the time on the house with extentions etc and then found out after that so now money is no where near what it was and we simply couldnt afford even £350 at the moment
Click to expand...

Dont take this the wrong way but find out how much the scan is and post back.

I know I would not mind sticking somit into a paypal account for you - if
others do they same I am sure you would get the bulk of it.

Got a 3 year old myself and cannot imagine the thing's going through your mind
atm and if getting a private scan could shorten that worry by 2-3 months then its worth it.
 
Biohazard said:
I would certainly contribute something/what I can.
Click to expand...

The same for me, I always read these updates after seeing the first one with a smiling little girl in a car seat. I often wonder if she's doing better.

Its really sad that a working tax paying father should have to go to these lengths of wait when as someone else said he gets his credit card out and the time dissapears.
 
Although I've only just joined up to the forum here, I've lurked for a long time and remember the first posts you made about your daughter. My thoughts are with you and your family and fingers crossed things go well.
 
Really dont know what to say mate other than I hope everything works out better than the best possible outcome for you, your family and Bethany. :(
 
If it helps in any way I was told by BUPA that an MRI would cost about £500 privately, although this was in london.

I can't understand why they can't fast track your daughter, after all this is affecting her quality of life far more than people with dodgy knees etc who also have to wait the standard 3 months.

Good luck and I hope it all goes well for you.
 
To be honest, get the credit card out.

If anything, you'll be getting answers a lot faster, and not risking the months of wait during which something could go wrong.

Sometimes I really do wish I lived in somewhere like the US. Sure, healthcare isn't free but health packages generally come with your employment package and are a lot faster and a LOT more professional than in the UK.

My wife suffers from DVT, and possibly Lupus. The last time she went into the hospital on her own will was because her leg was swollen and felt hot and tender. The nurse had to take about 3 jabs to retrieve blood from her hand, and left her with a large, bruised, solid swollen lump just above her wrist. This obviously isn't good for somebody suffering from Thrombosis and living on daily Warfarin tablets.

She went in for her routine test today and had a discussion with the Phlebotomist about said nurse. The Phleobotomist expressed her dismay at the fact that she had studied and trained for nearly 10 years for her role, while the government now bring people in for a half-day course to "learn" how to do it.

Oh yeah, and the last time she brought herself into A&E about her leg, she was in the hospital for 11 hours simply waiting for a doctor to see her - who simply said everything looked OK and to go home. An absolute disgrace.
 
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