Myxopapillary Ependymona's L2 and L3

[bluebear]

Hello there,

Newly diagnosed with a 'few' (MRI report says a few, you would think the radiologist could be a little more specific) Myxopapillary Ependymona's on my L2 and L3. 

It's hard to say how long I have been having symptoms for. I'm a nurse in the UK and back breaking shifts are common on my ward. I had lower back pain probably for many years and sciatica which worsened over the last 2 months. Every now and then I'd get agonising pain in my lower back that would make me cry it was so bad. Been to the doc many times, got sent away and told to take ibuprofen! 4 weeks ago I finally convinced my 'new' doc to send me for an MRI .... And low and behold I have a 'few' nasty buggers which are intradural extramedullary.

I have been referred to a neurosurgeon at Charing Cross hospital, which means in NHS time I get to sit and worry myself stupid for 6 to 8 weeks until I can finally get to see him.

I can't work in the clinical area, I'm a liability, can't have a nurse not 100% fit which I'm devastated about. I work in an acute area and I love my job. My husband is worried sick about me, he's not sleeping, waking up at silly o'clock bless him.

As far as symptoms go at the moment I'm pretty ok. Before I got the MRI report I went to a chiropractor who funnily enough seems to have sorted some of my troubles. I get a numb feeling in my legs when I've been walking around the supermarket and every once and awhile I get a pang in my back which makes me feel like my whole spine is out of place. But other than that I'm ok. Oh apart from the anxiety of course which makes me feel like I want to throw up!

At the moment I'm having an internal debate with myself over surgery v. watch and wait! I guess I need to stop my brain overworking until I see the neuro guy! 

Doesn't help that all my nurse friend keep saying how sorry they are and hugging me, I guess because we are nurses we know the implications, but it bloody well feels like I've been given the death sentence!

Anyone have any words of wisdom for me? It would help .... A lot!!!

[nomoremorty]

I had a myxopappillary ependymoma removed in 2013. Let's chat. I will send you a message.it is a tough surgery. the "watchful waiting" prior to scheduling was absolutely nerve-wracking.

[peaceandlove]

Dear Blue bear,

My advise to you is to make surgery as soon as possible. If you pain is less then 3 month, so your are still safe to regain the no pain again, if you keep yourself more than 3 month, your pain will be for life and will be stamped on your nerves even if you remove the cause of the pain.
Don't think twice, go for surgery but choose the best Doctor in this field. I repeat, choose the best doctor in the field , yes the best neurosurgeon who make microsurgeries. Yes microsurgeries. Don't accept to make your surgery without neuromonitoring or else you have risk to be paralyze.
So remember, best neurosurgeon is rule number one. Rule number 2 is microsurgery. And rule number 3 neuromonitoring and trust god.

good luck

Peace and love

[V]

Hi,

I was diagnosed with the same type of tumor in March, I got sent to the neurosurgeon pretty much straight away and a week later I had surgery to have mine removed as it was 7cm!

I am now 4 weeks post op and I feel so much better, the back pains have gone and I am slowly getting back to how I used to be. Its tough going through the op at first and will take a few weeks to feel human again afterwards but it has solved a lot of my issues.

As far as tumors go I have been told from the hystology that it is a grade 1 which is the least aggressive type there is. There is still a chance it will grow back and they were not able to remove all of it due to bits being attached onto the nerves so I am currently debating weather to go for radiotherapy or not.

I hope it all goes well for you and if you need to ask any other questions then feel free

[bluebear]

Update from me.

Saw the neurosurgeon, he is confident he can take the tumours out. I have 3 apparently, 2 will be removed, they are on the L2 and L3.

The third is lower down and small, watch and wait on that one.

Surgery in 6 weeks .... Yikes!!

[Kurt]

I also have a tumor believed to be a MPE, are you apart of the facebook group? A lot of us talk on there. I have been a "watch and wait" person for 3 years. It doesn't get easier bluebear, it gets harder. The pain and leg weakness has got much worse, my tumor hasn't grown since it was caught on the MRI. However, whatever it is doing in there it is causing more havoc. I agree about the surgery, just make sure your Surgeon is very experienced with these tumors. That also have a tendency to reoccur or seed. Make sure if he goes in after it, he gets it all. I am going to M.D Andersons very soon to face possible surgery. Don't be afraid, a few people on the facebook page just had Surgery and they all came out well. Pain gone! After surgery, make sure after the initial heal period is done that you do a lot of physical therapy. Get those nerves back to saying “hey I remember what my specific job was”. Over 3 years you learn a lot and speak to a lot of people! What I noticed was that the people who didn’t do much PT, they didn’t recover quite as well. Keep up the good fight and win this battle!

[bluebear]

I will see if I can find the Facebook page. The consultant I just saw seems to think they may not be MPE''s as originally thought, but neurofibromas. Would make sense that I probably have NF2 as I've got 3 of them. Runs in my family as well, my uncle had a tumour removed a couple of years ago that had gone through to bone.

My work won't let me come back until this is all sorted so now have to think about how my family can survive money wise for the next 2/3 months!

Pain wise I'm getting worse everyday! Think I'm developing foot drop on my left side, but I guess 6 weeks is pretty speedy by NHS standard.


[KURT]

It's funny, when you said they were intermedullary - extramedullary Neurofibroma or schwannoma was the first thing that crossed my mind. Honestly, I would say those are better than MPES to have.

[Nic]

I had a myxopapillary ependymoma removed on 25th may which was at L1/2. I wasn't really given a choice as if it wasn't taken out then I would probably have ended up paralysed eventually. The operation went well and they managed to get it all out. Just recovering a home now. I was lucky and had a really good neurosurgeon in Nottingham. I had to wait about 6 weeks too. I hope your operation goes well.

[lj1602]

Nic .........what size was your ependymono at L1/2?