intradural extramedullary mass

[iam1ofjw]

today my pain management doc gave me a copy of my MRI report, these words are scary, the others he said he had to look up too were: myxopapillary ependymoma
i started having problems controling my bowels and urine, about he same time, i was noticing small lumps appearing under my arms and on my ribcage. now i don't know if any of this is related but my pcp sent me to a pain management doc for steroid shots since the lumps were causing me pain on wearing a bra. anyway he ordered an mri and bone scan. after the steroid shots to the upper spine, the pain in the lumps went away, then after the shot to my lumbar region, aha, i had control of my bowels and urine again, and i had lost that completely. today he said be sure and tell the neurologist he is sending me to, that i had regained use of my muscles that told me when to go to the bathroom, that was important. anyway i am here because he seemed to NOT know or else seemed to not want to speak much to me about what the words meant, IS IT CANCER?
I guess i should have mentioned i have severe disc deteriation of the spine so i have severe pain in my spine almost all the time, for which i am taking celebrex twice a day and fibromyalgia that i take several other meds for. the shot in my lumber spine was for severe pain that meds were not controling, the mass was found at L-1 according to the MRI.

[betty]

Hello friend,
I am so sorry to hear your news.I know it is very scary.
My advice is to make sure that you have a neuro surgeon who has had lots of experience in spinal cord tumors.
Keep us posted please.
Betty

[linda]

Hi,

I hope you'll stay in touch with us. This site is and has been a wonderful resource and support system. We have felt the feelings, emotional as well as physical.

My very first MRI suggested intradural extramedullary, lesion, mass, etc. etc. some scary words. It's all so foreign. When do you see the neurologist?

It might be a good idea to have a list of all of your questions handy. Bring a relative or friend in with you...I found that to be very helpful.

Look around this site as there's a lot of information. I'm sorry too that you have to go through this but I am glad you found us!

linda c.

[Todd]

as you begin talking to neurosurgeons(NS), here is what you need to know. an ependymoma is generally a good diagnosis, if there can be one. they are typically more easily removed than other types of tumors. yours is a myxopapillary ependymoma, at least that's what they are calling it, truth is, they won't know until they biopsy - you shouldn't have a biopsy and a resection of the tumor, both procedures should happen at the same time, one surgery instead of 2 - it just makes sense.

talking to your neurosurgeon about the operation is going to be critical. the type of tumor they are saying yours it requires that it not be cut open until after removal. these types of tumors sit like an egg sac in your spinal cord. they need to pull it out before cutting into it, sometimes they breach the out barrier to send a piece of to the lab to determine type of tumor. in all the literature, it seems that if they breach this type of tumor while it's in your spinal cord it could "seed", meaning, if the contents of what's inside this tumor get into the spinal cord fluid, it could propogate.

I know all of this really scary, but it's important that you go into your consults with enough information to ask good questions.

here's another thing to consider. The research indicates 2 ways to get spinal cord tumors: 1) as an isolated event; or 2) as secondary tumor associated with other tumors in the body

It sounds like you have other tumors with possible lymph node issues as well (under the arm swelling is in your lymph nodes most likely). you need to a full body diagnosis to check for cancer, to see if you have cancer somewhere else in your body that could have caused your spinal cord tumor.

I know this is a lot to absorb. please bring questions to us, we have been through this and can help you in having good conversations about your health. you are at the beginning of a terrifying journey. we are here to support you and assist you in any way we can.

I am so sorry you are going to have to go through this. we are here to help.

todd

[iam1ofjw]

thank you all who have written to me. i thought when i wrote this last night, i don't know anything, i haven't had surgery. these people won't write to me.

i was just so scared, still am. my appt with NS is oct 27th if they don't have a cancellation. he is the doc who did surgery on my husband for a pinched nerve. he seems real popular, lots of bussiness. i hope it means he's good.
so you think the swellings in my armpits and on my ribcage might be related? i'll be sure and mention them to the NS. also the change in my ability to control my body functions with the steroid shots.
it seems like so much to remember.
i thought the steroids shots were going to make me better, then this popped up. i have had my rt hip replaced twice, it got loosened up by a fall and had to have a revision with in a short time after 1st surgery.
the DDD in my spine has always, well since i was in my 30s, changed my life.
i loved to hike, camp, bike, skate, now i can barely walk without a cane.
i was the fastest girl on roller skates until i hit 30. i loved to play with my children, now i feel like an OLD grammaw. not an active one who can have fun with them.
i have read letters of others in here with these tumors, maybe that is why i am scared. the outcomes are not always pleasent. and i read how they keep coming back in more places.
i have been having headaches recently, not like me at all. they don't go away. i didn't have my brain MRI'd so i am wondering if they are there too.
i just don't even want to think about it all until i know the diagnosis for sure. i know you all have been through this so i will keep you informed of whatever i find out. thanks again.

[Todd]

if you have a spinal cord tumor, your NS will want to MRI your entire spine to see if there are more. epyndymoma's generally don't come back, but they can. if yours is myxopapillary, how they remove it can cause a greater probability of it coming back.

the sterioid shots reduced the inflamation which allowed your symptoms to get better. they are a short term solution. definitely push your docs to do a full check to see if you have cancer elsewhere. the other symptoms shouldn't be disregarded. especially the swelling in the armpits. you may need a lymph node biopsy but it could be caused by infection as well.

let your docs know about all of your symptoms. it might be a good idea to write them down and any procedures you have already had. it will help to go into your consults with your docs to keep you focused.

todd

[peilynne]

Hi,
First of all, I'm so sorry you had to find us, but its good that you did. Reading your post brought back many bad memories for me, as I'm sure it did for others. I remember how terrified and alone I felt. It's the worst feeling in the world. I had to wait five days to find out if I was dealing with a brain tumor or a spinal cord tumor. I was having panic attacks. Since your appt with the ns is a few weeks away I strongly recommend a mild nerve pill in the interim. I ended up experiencing a complete breakdown, I could not stop crying and shaking and ended up at emerg. The doctor said my mind and heart were dealing with too much and I needed to give them a break before surgery. So, the nerve pill allowed me to calm down and take a deep breath.
I was only 39 when diagnosed,but like you, struggled for many years before that to keep up with my active lfestyle. It was hard.
It sucks to find out you have a tumor, but its step number one on the road to recovery. You will feel so much better when it is removed. They won't really know for sure what type of tumor it is until they biopsy.
Right now you should try to get yourself in a positive state of mind. You will face this head on and beat it. Tell yourself that over and over. Believe that you will have a successful surgery and get better.
in your journey, we will be with you. You have just made many new friends who completely understand what you are going through. Come here whenever you need us and know that we are thinking of you,
Lynne

[iam1ofjw]

its hard to type laying on my side but having great pain in spine even after steroid shot. anyway i got an earlier appt with NS because someone cancelled an appt tomorrow morning at 8am. so will let you know what he says. maybe i won't forget everything i have to remember. i will take notes.

[bethann]

Please take someone with you so you not only can have them take notes for you but that extra set of ears is the best!! Remember to take your list of questions with you also!

Thinking of you,
Beth

[Jody]

Update???