L1 Ependymoma

[futuremrs]

My fiance has, over the past three to four months, suffered from rapidly progressive sciatic-type pain. Due to his pacemaker, MRIs are not possible. He had a lumbar myelogram last week.

Today, the neurosurgeon pointed out a bulging disc at L5/S1. He attributes the sciatica to this. He also pointed out a small tumor at L1 which he called an ependymoma.

He blew this off as something we'll have to deal with eventually and said it was something he could have been carrying around since birth (he's 31), but wants to attempt epidural cortisone at the pinched nerve at L5/S1.

I have a medical background in cardiology, but neurology is slightly beyond me. From what little I've been able to glean from a few hours of internet research, an ependymoma at this point (around the cauda equina) could be the cause of the sciatic pain and foot numbness as well.

The neurosurgeon has suggested a "wait and see" approach with the tumor.

Is this truly advisable since CT images are somewhat inferior to MRI and could be the true cause of the nerve impingement?

[kansasmom]

I don't see how it could be figured out for sure which problem is causing the pain/symptoms. My son had/has a large ependymoma from L1 to L4. His most indicative symptom before diagnosis and surgery was pain when lying down.

I suggest that you get your fiance's images to Dr Jallo for a second opinion. He is very responsive and does not charge for doing this: [e-mail]

[sandyr]

Seek a second, third, even a fourth opinion. Dr. Jallo is a good place to start.

I had off and on back pain for years before I was diagnosed. This evolved into sciatic pain and neurological symptoms in both legs which I described as feeling like I had tight knee-high socks on all the time. Besides my 6cm tumor at L2-L4 I also had a bulging disk at L5/S1. My sciatica was mostly on the left side and was probably due to the disk at L5, but I also had bi-lateral pain too, most like due to the tumor. My tumor was large enough that it filled the spinal canal and cut off CSF to the bad disk, contributing to it's deterioration. My NS also performed a microdiscectomy on the L5 disk when I had my lumbar tumor removed. I still have some sciatic pain (mostly when I do too much), but it's nowhere near as bad as it was. The neurological symptoms are now gone.

[redaquadeb]

I too, am in the "watchful waiting" mode, and have been since I was officially diagnosed last September with an epedymoma at C2, currently posing relatively minor symptons such as random finger/hand/toe numbness along with my daily "foot drop" episodes...Also, I have herniated discs and slipped vertebre (both of which caused me debilitating pain in my acute phase), so I've had several "regular" cortisone shots and two LESI shots, most of which helped me out...So, I can relate to what you are going through, although all my docs believe that the disc/vertebre symptons are unrelated to my tumor, probably due to how high up it is in my spinal cord...Also, my tumor was discoverd as an incidental finding during a series of MRIs (and an angiogram) for other stuff, so I can fully relate to the shock of finding out that it exists! My best advice would be to: do as much research as possible, get as many 2nd, 3rd, etc. opinions as are needed (I had to visit 4 Boston hospitals and 6 NSs before I was formally diagnosed)...And, if he hasn't yet consulted with Dr. Jallo of John Hopkins (you'll see his name all over this forum!), then I would suggest that also...I hope that this helps... Best of luck!

[Howard S]

Yes, ependymoma can cause sciatica pain. My ependymoma, L-3-4 caused a lot of sciatica pain.

It became unbearable.

While I can't say what is causing his pain, I can also share I had a very small, teeny tumor at s-1, another ependymoma that once radiated (Cyberknife) my pain improved dramatically. Even small ones can cause quite a bit of pain in my personal experience.

I can't give a medical' opinion, but I would ask what the damage is to nerve roots, etc. as the tumor grows.

The tumor disrupting nerve roots, etc. can cause damage and lasting pain, according to one of my neurologists.

Good luck to you and your fiance.

Sharma

[funnywalk]

Given that this ependymoma is so low down, I would not be happy to wait and see. Get another opinion on this. And very good luck in the future - your fiance is lucky to have such a caring partner. Where would we be without them!

I had surgery for astrocytoma at T9,10,11 and 12 which was woven into the conus, just above the cauda equina. I still have it. I believe any tumour in that position can cause the neurological symptoms we all know and feel!

[ambene]

Funnywalk, why does a tumor so low as L1 make you uncomfortable with wait and see. Mine is at L1 and cauda equina, not real big 10mmx6mmx7mm. I am having an MRI at the end of Sept and hope to schedule surgery with Dr. Jallo after that. I am uncomfortable with wait and see because it is t cauda equina and dint wont it to become entangled. Is that your same thought?

[gr8pub]

Hi Ambene
I'm not shore what type of tumor I have but it's at the T12-L4-5 area and it's blocking the entire spinal cord.
I'm having surgery this Thursday so I'll be able to advise what type, and how I am after probably Saturday.
I could not think about waiting and seeing. Knowing that something is there is playing with my mind. Now I constantly "feel" the tumor . I do know though that my walking is getting worse, as is my limb feelings generally.
The surgery to me isn't the worry. It is not knowing what will happen post surgery that is my concern
Cheers
GT

[funnywalk]

Because the cauda equina and conus are right at the base of the spinal cord and many small and intricate twisting bundles of nerves are there, so any tumour is going to make their job difficult, and the surgeon's job difficult. You need as much info as you can get right now, that's why I wouldnt wait. I didnt recognise my symptoms for over a year so was already into decompensation by the time my NS saw my MRI.

[ambene]

Gr8pub, please keep me updated as to how you do after your surgery. My prayers will be with you.

Funnywalk, I totally agree and when the local guys looked at my MRI and said not to worry about it, I sent my films to Dr Jallo. I am having a complete sine MRI at the end of September and hope to see him in October to schedule surgery. I, like everyone here, am nervous at surgery, but I do know that the more tangled it be becomes, the possibility of worse outcomes increases.