Radiotherapy on the Brain due to multiple masses

NVC2016

Hi,
Can anyone please advise of great Neurologists in Ireland who do Radiotherapy for multiple brain masses?
We are hoping to get a second opinion as we feel full radiation is far more invasive than targeted radiation. They have said full is the way to go but the Doctor was not very convincing. We live in Leinster but anywhere in Ireland suits.
Also, any advice /experience of these types of radiation would be very helpful.

Thanks

TherapyBoy

Completed my second course of radiotherapy last year (first was in 96) for ongoing treatment of brain tumours. Doctor this time was Claire Faul in St. Luke’s in Beaumont Hospital.

Ask the Doctor you’re seeing to recommend someone to you for a second opinion, they’re familiar with your medical history & will be best able to get you seen quickly by a colleague. These Doctors are not in competition with each other & want to see you come through this experience healthily, happily & with a minimum of stress or pain. Tell your current neurologist that you want to consult another Doctor to get a second opinion on the matter & ask them to help you in recommending someone suitable.

I’ve been dealing with recurring brain tumours & everything that goes with it since 1990 or so. Any questions, don’t hesitate to ask.

NVC2016

Hiya,

Thank you so much for your message, really appreciate it. I'm very sorry to hear about all your treatments over the last number of years. Its fantastic that you're still battling through it which is so positive.

It is my mother who has been diagnosed with multiple masses so trying to help her as much as possible. We will definitely ask our doctor for a second opinion like you said.

Can I just ask, did you have much side affects from the radiation? Like memory loss, extreme fatigue? We are unsure on how many lesions she has so I guess it will depend on that. The doctors are very vague on the amount.

Many thanks

TherapyBoy

NVC2016 wrote: »

Can I just ask, did you have much side affects from the radiation? Like memory loss, extreme fatigue? We are unsure on how many lesions she has so I guess it will depend on that. The doctors are very vague on the amount.
Many thanks

Side effects from the radiation treatments have been difficult to pin down for me mainly due to the fact that I’ve had a lot of brain surgery over the years, so much of the fatigue & memory loss I deal with I’ve always considered as a surgery hangover.

Fatigue currently has me often falling asleep anytime I sit anywhere comfortable, but I still have insomnia at night. I’ve fallen asleep standing at the kitchen table reading the paper but then can’t sleep in complete peace & quiet lying in bed. If I try to describe the fatigue it’d be like a switch inside my head, if it flicks it’s like my brain just turns off & refuses to take in any information. I can be in the middle of a conversation & I’d have to just apologise & leave for somewhere quiet.

The memory loss is a bit tricky too, again I can’t put it all on the radiotherapy but I’ve lost massive periods of my life completely while other things still remain lodged in my head. I can remember certain things from childhood like they happened yesterday but I’ll forget what you just asked me or what I had for breakfast, or any detail from a 3 week holiday I took last summer. It seems to be very random what memories will stay with me, I think it depends on what part of the brain is affected exactly. For some reason I can’t forget a birthday date, I still remember the birthdays of kids I went to primary school with who I haven’t seen or heard from in 30 years but I can’t remember their names. Just the way the brain works I guess.

As far as definite symptoms of the radiotherapy many people do experience nausea & vomiting while doing the treatments, but it does pass & can be helped with prescribed medications. Another thing I noticed that I put down to my first course of radiation was mysteriously losing teeth. No pain or holes in the teeth but one day there would be a crunch in my mouth & the tooth was gone completely. This didn’t start until 10-15 years after I finished the radiotherapy though.

NVC2016

TherapyBoy wrote: »

Side effects from the radiation treatments have been difficult to pin down for me mainly due to the fact that I’ve had a lot of brain surgery over the years, so much of the fatigue & memory loss I deal with I’ve always considered as a surgery hangover.

Fatigue currently has me often falling asleep anytime I sit anywhere comfortable, but I still have insomnia at night. I’ve fallen asleep standing at the kitchen table reading the paper but then can’t sleep in complete peace & quiet lying in bed. If I try to describe the fatigue it’d be like a switch inside my head, if it flicks it’s like my brain just turns off & refuses to take in any information. I can be in the middle of a conversation & I’d have to just apologise & leave for somewhere quiet.

The memory loss is a bit tricky too, again I can’t put it all on the radiotherapy but I’ve lost massive periods of my life completely while other things still remain lodged in my head. I can remember certain things from childhood like they happened yesterday but I’ll forget what you just asked me or what I had for breakfast, or any detail from a 3 week holiday I took last summer. It seems to be very random what memories will stay with me, I think it depends on what part of the brain is affected exactly. For some reason I can’t forget a birthday date, I still remember the birthdays of kids I went to primary school with who I haven’t seen or heard from in 30 years but I can’t remember their names. Just the way the brain works I guess.

As far as definite symptoms of the radiotherapy many people do experience nausea & vomiting while doing the treatments, but it does pass & can be helped with prescribed medications. Another thing I noticed that I put down to my first course of radiation was mysteriously losing teeth. No pain or holes in the teeth but one day there would be a crunch in my mouth & the tooth was gone completely. This didn’t start until 10-15 years after I finished the radiotherapy though.

Aw it sounds like you've really been through the wars with all your treatments. It's great to hear you're soldiering on. I'm sure it's been a tough road.
Thanks a million for all your information, it's very helpful. I have read up on the pros and cons of radiation and I guess there's a mixed views on it. We just want to be sure that our moms quality of life will be extended and not made worse. It's such a big decision to make and once we get the second opinion it should also help. She is quite confused at the moment and very latargic due to the current medications. Time is ticking so the more information we have the better. Knowledge is power as they say.
Thank you so much again for all your information. I do hope that you make a speedy recovery yourself.