intramedullary Spinal Ependymoma

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Nearly 10 years ago I was diagnosed with a benign form of this tumor in the T 3/4 spine.section.

Initially it was a watch and wait scenario and the Consultant suggested the use of Amitriptyline, (or similar), as a painkiller if necessary.

So far I have resisted using these types of drugs and relied on paracetamol, mostly just a night to reduce some of the pain symptoms to get me to sleep.

I had one follow up MRI in 2020 which seemed to show little growth, although the Consultant was a little suprised that my symtoms were not moe severe.

Now this is no longer the case and the symptoms are becoming more intrusive

Surgery was ruled out because of potential heart related issues, and of course the considerable risks associated with these lesions.

At this time, I am due to speak with the Cosultant in a few weeks, and I am interested to see if anyone has found a non-drug way to moderate the symtoms .

Drainage had been suggested, but I was told that the tumor would refill, although I do not know how long that might take.

  • Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I can't help with your question, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily seen.

    While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hello Latchbrook,

    Thanks for your message.

    Having taken a quick look at your profile, I have to say that your problems are much more intense than mine.

    I really hope that all your treatments will be successful and bearable.

    I will wait until I have spoken with my Consultant again in a couple of weeks time and maybe I will have more information.

  • Hi 

    Thanks for your well wishes. 

    I think I've been lucky so far in that I haven't had any major side effects with the chemo I'm on. I'm keeping my fingers crossed that I'll find the radiotherapy as doable Slight smile

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"