Grade 1 subEpendymoma

Hi everyone 

so I’ve been having really vague symptoms over the past 6 months 

leg pain - neuropathic 

more recently left arm pain and tingling/numbness to my fingers. Mixing words up, headaches, hemiplaegic migraine never had a migraine before. Neck pain


had mri and called back to have with contrast - from scabs they feel grade 1 subependyoma. 
my letter from MDT states no clinical significance as no symptoms but I am having symptoms? I’m so confused and feel Unlistened to right now. Ive only had telephone appointments due to Covid. Speaking with neurosurgeon next week. Any tips on what to ask them? I feel my symptoms are getting worse and I’m so anxious. 
Any tips would be great. 

  • Hi  and welcome to the online community

    I'm sorry to hear that you've recently been diagnosed with a subependymoma. I'm afraid I don't know anything about this type of tumour but I noticed that your post hadn't had any response. I typed 'subependymoma' into the search bar in this group to see if anyone previously had mentioned it but only found one post and the poster hasn't posted for 3 years.

    You might like to take a look at this information from Macmillan on the sort of questions to ask your healthcare team. Obviously not all of them will apply to you but you could use it as a guide when you speak to your neurosurgeon next week.

    It would also be a good idea to keep a record of the symptoms that you're experiencing and when they happen between now and your appointment. I find it's easier if I have things written down as then I don't forget what I want to say.

    When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit 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.

    I hope you get some answers next week and do come back and let the others in this group know how you get on.

    x

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  • Thankyou so much for your reply. 
    it is quite rare I believe. 
    great ideas and I actually started to write some questions and log my symptoms yesterday. 

    sarah 

    Sarah 
  • Hi sarah i was told a week before xmas that i had a subependymoma i was also told my symptoms had nothing to do with tumor and i have many of them, daily headaches for 12 months and lately get them when i try to sleep, my eyes leak my nose and throat close up when i lay down my arm and hand have strange feelings of numbness and sensitivity i lose my voice 4 times a year for 3 weeks at a time, those are the ones i can remember at the moment, your post was about 7 months ago have you had anything done yet, i hope your ok x