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Brain tumour/Gliomas. Please talk to me about them.

(11 Posts)
whostolemycamel Wed 07-May-14 10:20:39

We live overseas. DH was diagnosed with a glioma in his right temporal lobe a couple of weeks ago. It is causing epilepsy for which he is now on medication. Treatment while he was actually in hospital was great, a million tests done in three days and diagnosis given. then he was sent home and the aftercare has been shocking. he's been given an MRI for three months time and a follow up a month after that. They suggested surgery wasn't really necessary. We have no contact or people who are willing to answer questions or give advice.

After calling an acquaintance who works at the hospital and sobbing on her we managed to talk to a neurologist (should really have been a neurosurgeon) in an unofficial capacity who at least gave us some information. He answered some of our questions, reassured us that it is a relatively routine issue but also said that he would probably opt for removal and he would head back to the UK for it.

So now we're trying to figure out how to proceed. His works' health insurance is an international policy and we can get treatment privately in UK - I would go NHS but if DH has to take LOTS of time off work they might let him go (there's not much protection), there aren't many of his jobs in the UK and he'd have to travel, not so easy if you can't drive for a year or more. in an ideal world we'd get it sorted and head back here. I just don't know if that's possible.

what sort of treatment can we expect? how long might recovery be? where is good to go (preferably north England)? We have a nurse friend asking opinions on the insurance company's preferred hospitals, we might have to go with a non-preferred one.

I just don't even know where to start.

Footle Wed 07-May-14 18:33:15

I have nothing very helpful to say but hope someone with more knowledge will come and help you. What a horrible situation. There is another woman who posts here, whose husband has a glioma with a bad prognosis. I don't know if it's ok for me to mention her nickname so you can get in touch -anyone know ? Perhaps she will respond if she notices your post.

Have you done a search, not for treatment information, but for a support group in the UK ? I believe there is one, and they would be a good place to start. I hope this goes as well as possible for your family.

Musicaltheatremum Wed 07-May-14 21:04:44

I have sent you an email OP. my husband had a brain tumour and lived with it for 12 years. I'm also medical and still sit on committees etc.
the charities can give you help.
www.thebraintumourcharity.org
www.astrofund.org.uk
I have met Katie Sheen who founded astrofund in memory of her brother in law. She come from Manchester and is usually pretty good at getting information about good surgeons.
I am in Edinburgh and can certainly give you the right contacts there.
Please message me back privately. I am only too happy to help having done this journey myself.

If you want the North West, then the Walton Centre is the place to be. I'm having my brain tumour removed there soon.

Musicaltheatremum Wed 07-May-14 21:39:58

All the best Sauvignon. Great name.

Footle Thu 08-May-14 19:05:02

Bumping this in case the OP doesn't notice it.

Hope it's going OK, whostolemycamel?

Thank you musicaltheatremum I'm nervous but I know it needs doing.
I've been told I'll be in hospital for a week and off work for 8 weeks.

Footle Sat 10-May-14 18:49:18

OP, I hope you have found some answers here or elsewhere. Wishing you all the best.

ProfYaffle Sat 10-May-14 18:56:01

I second the advice to approach the Brian tumour charity, they have a facebook group too.

(My husband had his tumour removed 10 years ago)

whostolemycamel Sun 11-May-14 06:38:03

Hi, thanks everybody. What a week. We've talked to D his work who thankfully have been brilliant; there isn't really any legal protection fort these situations here - he may have been fired and sent home. As it is, they're fully supportive - he's working at home right now and we're working on second opinions in the UK. He has an appointment on Wednesday at the nuffield in Leeds; we were recommended a consultant there.

Musicaltheatremum Sun 11-May-14 11:43:11

There's some good ones in Leeds.

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