I was simply told that it was a low grade. I didn’t realise until very recently that there were different types of astrocytomas too. Can I apologise, I seem to have stated that I was 16 when this happened but I was 21. I was in the summer break of the second year of my degree.

What grade astrocytoma was it?

As someone who has been diagnosed with this exact rare tumor, I am curious to know since they did not remove mine, did they remove your tumor or are you a 6 month checkup patient like I've become. This weather has unfortunately triggered pain in the affected area which is both mentally and physically draining. I have my days where I just physically and mentally don't know how I can continue but I just know that I can't give up... As hard as it is...

I wonder if Nicole has looked into a ketogenic diet, not only to control the tumor growth, but it has also been very effective for seizures. Just finished reading "Tripping Over the Truth", but there are a number of studies that link a ketogenic diet to treat epilepsy.

❤

I was diagnosed with central nerocytoma when i was 18. I'm now nearly 36 and have yearly checkups. They've since updated the MRI machine, and my last scan showed something the older machine didn't. So they want me back in for another scan in a few days. I discovered the benefits of ketosis/carnivore and fasting for keeping growth to a minimum. I hope this message will reach anyone going through the same/similar thing, and I wish them all the best! Take control of your own health.

My goodness what a rollercoaster! I'm so sorry you've been through all of this. I also have L'hermitte Duclos and it has been a struggle for sure. That's incredible that you've got the support of a whole team of people! I have a crappy neurologist who has minimized the diagnosis and have another MRI next week (not ordered by the neurologist who didn't even follow up with the new differential from my last MRI last year showed demyelination and I am having many symptoms of MS so they're investigating that). I don't know why our brains do such funky things, but I am glad we're not alone. Thanks for sharing your story.

'Promo SM'

My brother just passed away after complete the 4th surgery of central neurocytoma.. on his 29years old 😔

I was diagnosed with a ganglioglioma about a year and a half ago! First time listening in on your podcast, love it!

Thank you so much for having me

I just got diagnosed with a central neurocytoma. This was helpful and encouraging to hear. Thank you.

I know Laura (albeit virtually as we talk most days on social media ) going through a similar thing although a different type of tumour with my son’s diagnosis. Yet another devastating story . Yet another long wait for diagnosis and yet another family suffering the outcome . New to this channel but glad to hear Laura’s voice ❤

Thank you for allowing me to share my granddaughter’s/my story ❤

What an inspiration Mel is.

Yes after 19 ...8..6..back again many people surview still in pain cant norml

Did u readeation my scund tim .ism dishearted dont want medcn is bad too

Thank you for sharing your story Maxine! We have some similar aspects. So glad you are still here! Warrior strong!

My cousin have.surgry..many.people again grow..how to finesh for evr no mor..grow again.what.hospetal.and doctore..how is good doctore ???

All my love x

😜 "Promosm"

Great gift ideas!

Nice job Andy! Lovely interview Claire!

Truly incredible 😊

😝 Promo_SM

🔥 'promosm'

Sister ..blood pressure .diabetic .normle?????? Plses reply . Here 1 other friend Sam like you she asking

Where they are now I want to meet them .I'm 7 year now after tradition. I want to see people pleased find people .I'm in Maryland in glenbuurnie

Great video!

Thank you. Your video helped. I was diagnosed with a 3x3x2cm meningioma on September 18, 2019. Still in a daze on what the next step will be. They say the third times pays for all. In 2015 I had to have emergency back surgery to remove a cyst where I almost lost use of my right leg. 2016-2018 I fought Stage 4A Ductal Prostate Cancer till it amazingly went into remission. Now have to gear up and fight this.

Yes me to tomuch voice and light .can i talk to u .im slone im looking who other feeling

Thank you Carol for sharing your experience.

Thank you for sharing your experience

Thanks so much for such a great interview Claire, it was an absolute pleasure to talk to you & your Mum. You are a truly inspirational lady :-) Wishing you every happiness, Katie x

I have HYDROCEPHALUS & I own a Facebook group called Hydrocephalus & Spina Bifida Online Network In The UK facebook.com/groups/hydrocephaluandspinabifidaonlinenetwork/ and I'm a KZbinr I'm also looking to start doing recorded skype video blogs so can I please ask you or any one wo has HYDROCEPHALUS would you like to do a recorded Skype video blog with me some time ?

Hi. l need help too as an adult having a mass benign brain tumour in 2008...now have seizures and medication since had operation. Now I have another brain tumour? I don't want another operation. People have told me get CBD oil. But how would it interact with my lamotrigine and Diazepam and codeine. ? I want to be free of these recurrence tumours. It is grade one just now. NHS was supposed to be doing tests and trials on cbd oil. Still waiting for any results. l just want to avoid operation and seizures to stop. cbd stops seizures too l am told.

Hi. l need help too as an adult having a mass benign brain tumour in 2008...now have seizures and medication since had operation. Now I have another brain tumour? I don't want another operation. People have told me get CBD oil. But how would it interact with my lamotrigine and Diazepam and codeine. ? I want to be free of these recurrence tumours. It is grade one just now. NHS was supposed to be doing tests and trials on cbd oil. Still waiting for any results. l just want to avoid operation and seizures to stop. cbd stops seizures too l am told.

i'm 26. Have exactly same diagnosis and yes Anaplastic Ependymoma grade 3 and Just had the surgery. Now waiting for the chemo or other things from sloan kettering.

You'll be missed brother Rest Peacefully

Rest In Peace my friend....

love you so much Marie 💕

Very honest Claire. It is interesting to hear about your restless leg problem as I have that too and take an anti spam drug called baclofen which really helps, particularly at night as it can be sooo annoying. Great stuff keep it coming. Dawn x

Hey Claire! Thanks for sharing i learned alot about the mind. I just subscribed! I am a composer and I make epic soundtracks. Help me make a difference through my music. Please check out my channel. If you dig the new music please SUBSCRIBE! I won’t disappoint you. Lets support each other :)

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