Husband has suspected spinal ependymoma

Hi Beans33 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 don't have the experience you're after 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 spotted.

If you haven't done this already you could use the search function at the top of the page to look for previous posts which mention this type of surgery and reply to any of the posters who you think might be able to help you further.

While you're waiting for replies it would be great if you could pop something about your husband's 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.

x

Hi Beans33. I had surgery for a spinal cord tumour in Feb of this year, although mine was in the thoracic region. The surgery was long but it went well. I have side effects including sensation loss in my feet and legs. I walk with a stick now but I am mobile. For me I was just relieved to be rid of the pain I was in. Wishing all the best to you and your husband. Happy to answer questions if I can be of any help

Hi 

I am so sorry for the very very long time in replying. 
My husband had his surgery back in June and the surgeons were able to get all the tumour out! The MRI came back clear. 

I wanted to update this thread in case someone else read these messages whilst being in a similar situation. I know spinal tumours are very rare but if you’re reading this and want to hear another experience please comment. 

My husband walked out the hospital (albeit slowly) within 7 days of having the 9 hour surgery. He’s had to have physio to work on his balance and muscle injury from the surgery but he is now back walking and has even signed up for a marathon! He’s lost sensation in a couple of his fingers which makes writing difficult but in comparison to the picture we got painted by the first surgeon we will be forever grateful for our second opinion surgeon. 

I hope this gives hope to anyone in a similar position. 

Hi beans, I had a spinal ependymoma removed at L1/T12 I was told I had to have this removed or I would be paralysed and I was told that the surgery could also paralyse me, it was scary but I put my faith in the neurosurgeons very capable hands 

I had lived with horrific pain for months while doctors were medically gaslighting me and telling me my pain was anxiety, it was in my head etc it took over 8 months to diagnose this. I’m happy to say that all went well and I walked out of hospital 4 days later. It hasn’t been all fun and games as you can imagine but on the grand scheme of things I feel lucky. I’ve got used to a new normal which took quite some time to accept and it affected me emotionally as it pushed me into the menopause ( presumably due to the trauma of it all) so hormonal to boot. 
when I saw the consent form it looked awful, but I think they have to let you know the worst outcome. I don’t really know how to put your mind at rest because I know how stressful it is, but I wish you well… I would start him eating high protein diet in prep for the surgery to give a better healing chance, I wish a speedy recovery