Bethany's Myxopapillary Ependymoma

[bethanyhoward]

Hello all,
Today I discovered this website as I was contacted in regards to posting some of my videos from my journey (currently on the home page.)

I guess my parents had been on this site, but I was kind of busy at the time with treatment and recovery!

Here's my story:
I'm 24 years old and for many years I had been having pains in my hips, which later became pain also in my legs and all across my lower and later upper back. Many tests had been done (CT Scan, blood tests, etc) but nothing was showing. I was being treated for Fibromyalgia (which to this day I still believe I have) as well as being treated just for the pain. I was given even stronger medications were not totally helping. I wasn't able to sleep at night due to pain, and during the day, I would do my daily activities, but was suffering the entire time.

I was sent for an MR as a final test to see if anything showed.
This was at the end of March 2009. At a follow up meeting shortly after I was told that there was a large unusual mass in my spine which I would later find out was a Myxopapillary Ependymoma. As my doctor tried to connect me up with a Nero surgeon, my pain continued to get worse. I got to the point where my bladder was being effected and I was unable to pee regularly.

The MR showed that the tumour was entangled completely in my nerves. It ran from the bottom of my spine up to T-11. The figure it had been growing for 5-7 years.

I ended up in the ER just over a week after my diagnosis. This was on the Friday and by Monday I was scheduled to have surgery. Prior to surgery the surgeon himself (Dr. Neil Duggal - www.cnsuwo.ca/faculty/neurosurgeons/neil-duggal/) came in and talked to me to make me aware of the dangers of the surgery. He told me that because of how the tumour was entangled in my nerves, they would not be able to take the entire thing out. If they did, I would lose use of my legs. Also, I would quite possibly lose control over my bladder, bowels, etc. He said "but since you're young, we'll try and save your legs." Even at this point I shouldn't have been walking as well as I was.

My family was told that surgery would last around 6 hours. 6 hours passed and I was still in surgery. More and more time passed, and 11 hours later I was out.

After those 11 hours, I remember waking up and my toes were moving. They said, your toes are moving and good news, we got the entire tumour out! The team of surgeons were even surprised as they said this wasn't possible.

I'm a believe of God, and believe in miracles. I believe that this was a miracle as they said it was not possible and that on the MR that my nerves were too entangled, but when they got in there some how they were able to tell the difference between nerves and tumour.

Following, I had 28 radiation treatments to ensure that it was completely gone.

Now it's almost the end of 2011 and all seems to be going well. I have follow-ups now every 6 months. My next one will be in February to make sure things are going well.

So that's my story!

[Teri K.]

I'm glad you got to share your story and I'm so happy for your outcome. Your story sounds similar to mine, with my first surgery being for a large Lumbar Myxopapillary Ependymoma at the young age of 23. I'm now 48 and have had three surgeries and two rounds of radiation treatment-but still living and enjoying a great life. Continue regular MRI follow ups and stay healthy. Welcome

[bethanyhoward]

Glad you're still enjoying life.

Had they gotten the entire tumour out the first time around? The second time it says inoperable, so did they get ride of it? And I see the last time it was a different type?

Sorry, lots of questions! Just wondering.

[Teri K.]

Hello-
They did feel they got the entire tumor out the first time, but my first tumor was before there were MRI's so they did a procedure before my surgery that may have caused some cells to spread. The second surgery they did remove some of the tumor, but left some due to the fact they thought it would cause paralysis in my legs. This is why they did radiation. Things in my lumbar spine have been stable since than. My Thoracic tumors are still Myxopapillary, I didn't list is correctly and only stated they were intramedullary ( location) only. These tumors are drop metastasis from the very first tumor in my lumbar region. They have sugar coated my spine in the thoracic region and are monitored very closely for growth. If there is growth I have a few options for treatment. One option being the Cyber Knife (which I have already been evaluated and discussed as an option) the other being the addition of Chemo treatment and possibly more surgery. I've been very lucky that these remaining tumors are only millimeters in size and don't change very quickly so the watch and wait works great. I currently don't take any medications on a on going basis. I am back in physical therapy and specialized massage to keep my spine aligned, which keeps the pain at a very tolerable level. Have you been able to resume most of your normal activities since surgery and radiation? Just on a positive note- I did have a child after lumbar radiation and two surgeries. I remember the doctors telling I probably would not be able to, but I surprised them.
The best for a great 2011.

[bethanyhoward]

Thanks for the information. I know mine could come back but they said that because they got the entire thing out and did radiation, the chances are much lower.
Yeah, able to go back to normal activities with no problems really now that I've healed. I sometimes still have some pain, but not really much in the sense of nerve pain, which is great.

Good to know about having a child. The only thing thing for me that could affect that is that my radiation was right on my ovaries, but I think everything is back to normal. Time will tell I guess!

[lepetitangel]

Hi Bethany and Teri,
Thank you both for sharing. I'm 30 year old and was diagnosed about 2.5-month ago with a cervical astrocytoma or ependymoma. I've seen several doctors and will most likely have surgery sometime this year. I'm glad that you both went through surgery and are recovering well.
Did you both have ependymoma? I heard ependymoma doesn't respond well to radiation. Why did your doctor decide to go with radiation? And for Teri, since I'm 30 and am marrie,d how will radiation treatment affect whether you can get pregnant and all that stuff? I think if my turmo is not 100% resectable, they may want me to do radiation as well...but I'm a bit concerned whether they'll affect my ability to get pregnant.

thanks,
angela

[lepetitangel]

Also Bethany,
Do you mind sharing a bit what your post-opt symtoms are like?

thanks,
Angela

[bethanyhoward]

Hey Angela,

Mine was a very large ependymoma (myxopapillary to be exact)
They removed the entire tumour, but because it was so entangled in the nerves they said they would do radiation to clear up anything that would possibly be so small to see, but still attached to my nerves. Up until now there has not been any showing of new growth, so I would assume that would mean the radiation zapped anything that was left. Not sure how effective it is when it comes to shrinking larger portions of tumour since mine was different than that.

Due to where my tumour was they said that the radiation could effect my ovaries. They talked about doing a procedure to move my ovaries out of the way for treatment, and then move then back following. After debate, they decided that it was safer to leave them where they are.
I'm not married or trying to have children, so I'm not sure if my ovaries were effected or not. Things seem to be back to normal, but I guess only time will tell if the radiation did indeed have a negative effect.
Since the dosage of mine was not as strong as if they were shrinking a large portion of tumour, they said there was a fairly good chance things would be alright. I'd suggest you ask specifically those questions when you meet with specialists.

As for post-opt symptoms, so far I'm doing alright. My back gets sore at times, which I feel is normal since my spine was cut open for surgery. I did have a small section of bone removed during the surgery, which in the long run could effect my posture...but since I'm young they thought that the muscles around it may strengthen enough that they did not need to put any supports in.
I do have parts of my leg that go numb at times, but nothing that effects anything. My toes "dance" as I call it or twitch sometimes. This happened much more when I had the tumour, so I'd assume some nerves were damaged. My big toes sometimes go numb, which also happened before.

All of these things I would consider minor symptoms that don't really effect my day to day life much. My back being sore at times can be annoying, but it's nothing like pre-surgery. Also I'm short and a student, so because my legs don't reach the ground when I'm sitting all day, this makes it so my back and legs ache, so it's just learning to work around that (which is normal for people who's legs don't reach the ground... but with my back being how it is, it adds some)

hope that helps
feel free to ask anything else!

[santosh]

Hi All,

I solute your courage and kindness to share your story with all who's is from different places of world, with different stories.

My Story very much similar to Bethany's. But the ending is different.

I'm 26 now and I'm from Nepal which is a developing country. When I was 16, I started to feel a strong back pain. Before that, I was quite active in sports and all activities. In beginning, the pain only occurred at nights. I was studying Science and it badly hampered my study. I had checkup in many hospitals, they took X-ray and all blood test. Nothing was seen. One day, I met foreign doctor who advised me to take MRI. Due to lack of money, I had to delay that few years. My mom tried all the ways that she believed to be true to treatment, including 'witch doctor', but cause remained unknown. I started to feel numbness in my left leg. slowly I lost control in bowels. But my urinary was fine then.

Finally at age of 23, I had MRI of my spinal cord, and I was diagnosis with tumor - Myxopapillary Ependymoma extending from L3-S2. Doctors told me that it is very large and entangled closely with nerves. Some doctors refused to undertake operation. Some were surprised to see how I was able to walk. After a week of learning about tumor, I was confirmed to have operation in Neuro Hospital (http://www.neuro.org.np/) by Upendra Devkota. He's the most renowned surgeon in field of neurology in Nepal. He showed confidence but did not warn us about the postoperative consequences.

The operation took 8 hrs and they said it was success. First thing i figure out was that I could not pass urine - I've been in Catherization and also problem with bowel. I slowly started to walk. But, my urine problem did not seem to go. After 23 days, i was discharged. It seemed my condition was poorer than before. I was discharged with one more disease.

I succeeded to urinate my self after 3 months, the I started using pads. My legs were still week. I went to jobs. On the followups - i found the doctors helpless. they just told me " wait and see, most patient regains urine consciousness in 6 months." They did not tell me about radiation.

One good thing is that my pain are gone, I can sleep well. But, incontinence has affected by social life.

Now, I have stopped followups. I take cycle to office. I try to be more active though my jobs is in software (where people had sit in chair for hours). I m clueless but try to live more fully. I laugh more and celebrate more. I help more. I don't seem to cure it, i just try to manage it.

Thanks for reading it all.

[greggerin]

Bethany how big was your tumour.. in inches or centimeters. I am from Australia so I am metric but I can convert if necessary. Mine is 15 cm and also entangled in the nerves. I am a vetran with 8 operations and I have to say I have learnt some easy steps to dealing with it all. I guess if I hadnt I would be an idiot with this much experience... any love and best wishes from Australia. You are half way through yesterday... ha ha and they call us down under but it is night time tomorrow your time now so I will think or you and send you a positive message and thought from down under.....