How you get an epedemoma in the first place?

[von]

I've been curious as to what caused the tumor now for a while. Was watching a video on CERN's website where they mentioned they did not find a genetic or environmental link to ependymoma.
Video is here: cern-foundation.org/?page_id=71

I realize if there are only 300 cases diagnosed a year in a world of 7 billion people, there is no way to know anything for certain.
However, I had a epidural in 2000 with my C-section. The spinal cord was punctured at the time and I was on bedrest for some time after for fluid leaking out of the spine. Tumor is in thoracic/lumbar area where my spine was punctured at least 4-6 or so times for the epidural. After the surgery, I had symptoms consistent with swelling/cyst of the spine, but I have no way or knowing what was going on in my spine at the time.
Mostly, now I'm just curious if the epidural could have caused a cyst or something that started the tumor growth in motion.
It's an odd coincidence. I know I'll probably never know for sure, but putting it out there in case info is useful to anyone else.

Wondering if anyone else on the forums had any spinal trauma before tumor developed?

[lw]

I don't have an ependymoma but I thought I'd reply to this as it's something I've pondered on from time to time. In my pre tumour days I always believed that health was down to genetics and/or luck; nowadays I'm not so sure. I live in a small village on the outskirts of London that is all of a two mile stretch, and in the last 4-5 years (since my diagnosis and treatment) I have known of a further 4 cases of spinal cord tumour. We all live in very close proximity and I can't help but think this is all too much of a coincidence. I know local residents have been up in arms for years about certain chemicals that are used on the farmland - perhaps this is a possibility, however remote. After all, we are all totally unrelated.

As a child I was struck down with meningitis and consider that a possibility too. I know the illness can cause permanent neurological deficits and even brain damage, so who knows if it triggered some kind of cell mutation or weakness.

It does seem coincidental that your tumour is in the same location as your c section. How long afterwards were you diagnosed with your ependymoma? From what I've heard (as a lay person) most of these growths are slow growing. My neurosurgeon more or less insinuated that mine has been there for most of my life - there again each case has its own complexities. I would be interested to hear what other people think and whether there is any data available which lists common denominators with SCTs. I reckon Todd might have some info!

[von]

That's very interesting.

Actually the area where I grew up does mention having the highest occurence of brain tumors in the U. S. I'd think One related article is here, but I hadn't looked into it too much:
mississippimedicalnews.com/local-neurologists-work-to-curb-high-incidence-of-brain-tumors-cms-348
I no longer live in the South, moved to AZ but I def had tumor while I was there.

I was diagnosed in 2008 or so, but was showing neuro symtoms and such as pinpoint pain for years before. Docs just said it was probably something like fibromyalgia and I went undiagnosed for many years. So I know I'd had it at least since pinpoint pains in 2005 or so. As slow growing as tumor was, I have no idea how long it's been there. Timeframe coincides with my spinal fluid leak, however, it could have been a couple years later. So I guess it's be impossible to know for sure.

I do have some family members with neurological issues, I'd just figured it was probably heavily influenced by genetic issues. It's odd, I'm otherwise healthy. Just the one problem (a big problem) in the spine.

[kathyb]

There is a history of cysts in my paternal grandmother and aunt, but not in the spinal cord. My paternal cousin died of a brain tumor, uncle ALS and father Primary Lateral Sclerosis. I just figured I had a cyst that just grew in the very wrong spot and that neurological d/o ran in the family.....thanks dad:) My dads sister mentioned a plant site and concern for waste products in a stream that ran behind their house when they were growing up. I can't think of any spinal cord trauma I had prior to surgery, but looking back, can see that there was a problem years before my neck pain and left arm numbness. I always thought it would be a heart attack (again, my dear ol dad. Poor guy had it all). One of my girlfriends (also neurological problems) moms mentioned one day that none of her friends seemed to get sick like her daughter and myself...is it just better diagnosing? Did people just used to die? So many things to think about. I am sure all of the processed foods we were and are being fed has not helped:) I have been trying to get back to basics in my home.

[von]

Thanks for your comments Kathy, I appreciate you sharing such a personal story. I'm working on putting together a blog, of such personal information myself. So when other people come along who have this disease, they can at least read what I've gone through, what has worked for me and what hasn't.

Yeah, I'm off of processed foods, too. The exception is dark chocolate and non-gmo soy products like unsweetened Silk or tofu, I tolerate those decently despite some of the process.

[pringleman]

One doctor suggested to me that trauma may cause the tumour to grow. But my specialist did not want to comment. I did have a high speed mountain bike accident in 2006, which everyone who saw it thought I would never stand get up. But I did and amazingly only had a cut on my forehead where the helmet broke. Now I wonder whether that was the trauma that stated the tumour. Like you say, the trouble is there are too few of us. And co-incidents do happen. Two weeks before my symptoms developed a new bloke joined our team and he told me he was starting a new career after surviving a spinal tumour. Turned out his was an ependymoma as well. It was great to know that he was alive and walking when I went in for my op.

[Ann]

I got diagnosed 2 years after a car accident. It was my second accident and both gave me whiplash. My SCT was at C 2. Maybe there is something to the trauma.









Tanystic ependymoma grade II. 8/4/94 Dr. Fred Epstein NYU

[cyrola]

I have had trauma too in the manners of accidents but there also appears to be cancer in the family. Also me and me dad both worked with radiation.

But hey does it matter. I have kicked myself so often if I had used a rope climbing that day, or if I did not go after a buck in the uranium boom but it does not get me anywhere.

Just now Ringo Star is singing Photograph on the radio and I think that it is fit me that is not coming back anymore.

What ever caused it we just got to get used to it.

It is a crazy life, dude. Rock on.

[von]

Thank you for you comments. It's of interest to me because I have a 12 year old daughter, if it's a genetic issue, it's something parents should know. Thanks all, will continue to keep an ear out for more info on this.

[feliciafawn]

Wow! Von, I just realized you were the owner of that blog! It was the first thing I read after finding out my diagnosis (I think I found it through Google or something.) It really helped me feel not so alone. So thanks.