C2 Intramedullary Ependymoma

[Dawn]

The ependymoma was found in 2011 at C2.  It was stable (no growth - it is 1.5 cm size) until last MRI.  Nobody agrees on the amount of growth but they all agree there is some growth.  Neurosurgeon does not recommend surgery due to high potential for disability as a result. 

I guess I'm here because all the drs tell me they are unsure whether my symptoms are related to the tumor but I think they are.  My feet are numb, tip on my tongue is numb and I have a constant pressure in the back of my neck.  After reading much about this type of tumor I think they are wrong and I would very much like some feedback on a better plan for managing my symptoms.  I'm being told that we just need to wait until the symptoms from the tumor are so bad that the disability from the surgery is worth doing.  Isn't that a really terrible plan? 

I'm quite anti-pill and follow a vegan, mostly raw diet.  Next step is to eliminate sugar as tumors feed on sugar, I believe.  I'm not happy with the 'wait until you are disabled' plan.  Any thoughts on places I can go for help?  I'm being seen at Mayo Clinic in Rochester currently. 

[redaquadeb]

Hi, Dawn. I can relate to your concerns! I too have an intramedulllary ependymoma @ C2, slightly smaller (or at least it was) than your's. I'm in the "watchful waiting" mode as well, and it' s tough space in which to live, as there's always that notion of the tumor lurking inside. Also, I have symptoms numbness, tingling, pain, mostly lower left leg and foot, but also occasional fingers, hands, etc)that the doc believes is due to sciatica, and not to the tumor, but, who really can be sure? I do not know of any docs in Rochester, as I live just outside of Boston, but I'll bet that someone else who reads your post will have some ideas for you. If you ever want to chat, feel free to email me: [e-mail].

[[e-mail]]

I had an 11 cm ependymoma sacral,spinal tumor removed at Mayo Jacksonville. They got what they could but had to leave some residual on the tips of the nerves in the sacrum as the nerves were clumped due to the tumor growing around them. They did not want to risk paralysis. Two years later, I still have bladder, bowel/colon issues with minor mobility issues. Sitting for extended periods an issue.
I was perfectly healthy prior to this discovery. It's been a long journey but I am back at work part-time.
Chronic inflammation and infection surface from time to time as well as discomfort. I believe you are right
about sugar, sugar really aggravates my issues particularly at night. I eat mostly fruits and vegetables and grains. Lots of fiber for the bowels. But I am now starting to believe that this type of tumor does feed off sugar....

[Dawn]

Oh sugar. I still haven't been able to successfully cut it out of my diet. Best of luck to you if you are trying. I've made it a few weeks at a time but once it is back in the diet it is a monster rattling the cage to be fed! And leads to chronic inflammation which I am certain flares up my pain. Fatigue certainly makes my neuropathy worse.
It's interesting to me that so many people who end up with SCT as a primary tumor seem to be young and healthy. The finding certainly wreaks havoc with our mental well being and surgery has physical effects. Best of luck to you.

[samuridude]

Hi redaqoadeb,

"that the doc believes is due to sciatica, and not to the tumor, but, who really can be sure?"

If your doctor said those words, then my suggestion is to find another doctor. Sciatica is another term for inflammation of the Sciatic Nerve caused by your spinal cord tumor. I had Sciatica for years, before they finally did a MRI and found the tumor in my neck. And the only reason they did a MRI was because I went into emergency in a wheelchair. 

-Good Health    

[redaquadeb]

[font size="2"[/font]Hi. Good to hear back from you. My tumor, like yours, is definately growing, albeit slowly. I too have some numbness (left foot is somewhat "frozen" and tingly; left big toe is now completely useless!) and some tingling/numbness in my hands. Also, my feet "catch" a lot (foot drop?), but some days are better than others, and some are worse. I hear you about the sciatica nerve and tumor, but all of the spine docs that I've seen are adamant that it is NOT due to the tumor. At this point, I have no idea!

[Cinsy]

Hi Dawn,
I did the wait n watch thing from last October  and had my tumor removed in May
it was larger than measured in MRI 's
My intramedullary tumor was C5-6 and yours is higher which is more risk 
I felt like the wait time was just eating at my energy and well
being 
my symptoms worsened and that is what pushed me into the OR
for us having this rare tumor growing and then being asked to decide the when - it's tough
,Mayo is a great place I was at the cleveland clinic 
if you have coverage get a second opinion 
I just started back to work and it's challenging but I think I can at least handle part time 
the difficult decision is that at the cervical level we can be quadriplegic from surgery and as they say tumor location is in high priced real estate location 
trust in your neurosurgeon and way all options including second opinion 
read read and read up on the tumor tx and you will have better questions for the doctor
my final diagnosis - ependymoma grade 2 and they think they got it all but I am seeing a radiation oncologist and have another MRI in a couple weeks 
keep us posted
i am new to the tumor forum. 

[Carrie]

Dawn, if you have your MRI on a disc you can send it to Dr. George Jallo at Johns Hopkins in Baltimore. Highly recommend him and you will see if you look on the board several others also recommend him. I had surgery 3 years ago my tumor was C6-T1. I have some deficits but the worry of the tumor growing is gone. I can post Dr. Jallo's information if you would be interested. He looks at the MRI scans for FREE. He specializes in these tumors (even though he is a pediactric neurosurgeon). He has done cases from all over the world.

[Dawn]

Thank you everyone for the responses. I've been away from the forum for awhile.
Yes, I do hear Dr Jallo's name often. I did go ahead and seek a 2nd opinion from Dr. Laurence Rhines at MD Anderson Brain and Spine Center in Houston, TX. It was a great experience - much better than the information I received from the team at Mayo. NS at Mayo told me that surgery is no longer possible, but Rhines disagrees. Of course, as Cincy says, cervical tumors are high priced real estate. Boy, haven't I heard that often!
I have a better understanding now of the price I will pay when it comes time for surgery. Right now we are continuing in a watch and wait phase. He started me on Lyrica and Celebrex for neuropathy pain. It is working very very well for the burning in my hands and feet. The Lyrica completely takes care of the burning for 4 hours - so I just take it every 4 hours and I'm fine. The pain across the back of my head is not controlled as well. For a month after starting the meds the head pain was much better, but now it is back. That is the worst of my symptoms right now. I don't think I have motor deficits except I do notice that I catch my left foot on the floor quite often. I don't fall but I wonder if I'm dragging it a bit as I trip on flat floors often because me left foot gets stuck. Does that sound familiar to anyone?

[crowning]

My husband was diagnosed with a small ependymoma T-6. Pre surgery he had back pain and back spasms at night, and change in sensation on top of right foot. Surgeon told him it had to be removed so he would not lose any more deficits. We were sold the surgery. How we wish we would have had a surgeon tell us to wait and see. The surgeon told him he would be in hospital 4 days tops, and off work for 3-4 weeks. His surgical outcome was based on how he was before the surgery, and as he was a young healthy guy, his outcome would be the same as before surgery, minus the back pain. When my husband awoke from the surgery, he could not feel or move anything from the waist down. He is paralyzed from the waist down, no bowel or bladder function, no sensory. He is confined to a wheelchair, and suffers from chronic pain everyday. He went from walking with back pain at night , to a paraplegic. Our lives have changed forever. I hope the decisions you and your surgeon make, only bring you health and happiness in the future. My husband was not so lucky.