myxopapillary Ependymoma

DJ1985 said:

WE ARE SO MUCH ALIKE!
I cannot believe how similar my cancer (ME) survival story is to yours when it comes to MRI's and getting diagnosed. I am 27 now, and was diagnosed in early in 1997 when I was just 12. I was in excruciating pain due to the nerve entanglement due tomy tumor. My legs had terrible shooting pains and I had increasing back pain. For years, my family physician Dr. Huffman denied that I had anything significantly wrong and explained that I was faking for attention to my parents. Two years of agonizing pain to finally get a MRI which easily found the tumor (L1-L5.)

My surgery was a complete resection, yet due to nerve entanglement I had to get radiation therapy. My surgery involved Laminectomy and laminoplasty, which involves the destruction of the vertebrae. Both radiation and the extensive surgery have caused me chronic back pain for years now, although there was a period of time following surgery where my back was fine and I was in no pain.

Otherwise I have beat the odds much like yourself and survived a fairly rare cancer. I am happy to hear the story of someone who went through a similar situation and made it out in one piece!

Dylan

Please join our myxopapillary ependymoma group.  I created it since my son was diagnosed last year at 7 years old.  Would love to hear how you are doing now and what treatment options you have tried.

gclark said:

ependymoma
I had a surgery on spine and they removed what they could, but it was wrapped around my nerves, so could not get it all. I had leg, hip, pain some head aches. I do have a shunt in my head. I wonder if I had done nothing what would have happen. I now have finished 30 radiation treatmens. My wife and I are talking about disability as if you have 5 to 10 years is it worth trying to just work. Just need to hear what other have to say that are in same boat.

how are you doing?  my soon to be 32 yr old son was just diagnosed with multiple inoperable tumors in his spine, much like you.  they won't do surgery however, and just want to start radiation soon.  any suggestions you have to offer will be greatly appreciated.  we are currently in the UCSD system for his care.  he's in a lot of pain and it seems to be getting worse since they did the laminectomy for a biopsy.  hope you're still out there!

hi there, i have just joined this group, i was diagnosed with grade 2 myxopapillary ependymoma on the cauda equina, I awoke in severe pain one sunday morning at the beginning of last may 2013...i was on my way to do a bank shift at the local cancer hospice where i worked occasionally. I also have a main full time job in a similar line of work in the care industry. i assumed i had slept funny and on getting out of bed i noticed a severe pain in the back of my left calf, again i assumed it may be a cramp. this pain continued for several weeks and was requiring analgesia, hot water bottles etc. i thought this would get better but it actually got progressivly worse, so much so i went to A&E. Although my back was very painful it was my leg that was bothereing me the most. the A&E DR checked my leg and said it was ok NAD.

I went to my GP, who suggested doppler test = again NAD

A&E AGAIN= TESTED FOR BAKERS CYST AND DVT AGAIN NAD.

THE PAIN IN MY BACK, NECK SHOULDER AND ARMS BECAME SO MUCH WORSE THAT I WAS AT THE GP NEARLY EVERY WEEK IN TEARS, I REFERRED MYSELF TO THE PHTSIO IN 2 NEARBY TOWNS AND NEITHER COULD WORK OUT WHY I HAD SO MUCH PAIN IN MY LEG. ONE OF THE GPS REFERRED ME TO A MUCKULAR SKELETAL SPECIALSIT WHO THOUGHT THIS MAY BE DOWN TO A PROBLE WITH MY BACK AND HE SENT ME FOR AN MRI. AS YOU KNOW ONCE THE RESULTS COME IN , EVERTHING MOVES FAIRLY QUICKLY. I HAD SURGERY AND FULL REMOVAL OF THIS TUMOUR  AND MADE A VERY GOOD NEUROLOGICAL AND PHYSICAL RECOVERY.

I AM GOING TO HAVE MY 3 MONTLY MRI IN THE NEXT FEW WEEKS AND I AM AFRAID IT MAY HAVE COME BACK, MY LEFT LEG NOW JERKS OCCASIONALLY AND THIS STARTED A FEW DAYS AGO (WAS CONSTANT PRIOR TO SURGERY)  I AWOKE WITH PAIN IN MY NECK AND SHOULDER TODAY.....I WONDER IF I AM BECOMMING A PARANOID WRECK OR IF I HAVE JUST SLEPT FUNNY LAST NIGHT.

I DONT REALLY FEEL THIS IS OVER FOR ME YET BUT ALL AROUND ME PEOPLE SEEM TO THINK I SHOULD BE HAPPY IT ALL WENT WELL, STOP TALKING ABOUT IT, STOP THINKING ABOUT IT AND MOVE ON. I STILL HAVE A LOT TO SAY!

lsfunk01 said:

hi there, i have just joined

hi there, i have just joined this group, i was diagnosed with grade 2 myxopapillary ependymoma on the cauda equina, I awoke in severe pain one sunday morning at the beginning of last may 2013...i was on my way to do a bank shift at the local cancer hospice where i worked occasionally. I also have a main full time job in a similar line of work in the care industry. i assumed i had slept funny and on getting out of bed i noticed a severe pain in the back of my left calf, again i assumed it may be a cramp. this pain continued for several weeks and was requiring analgesia, hot water bottles etc. i thought this would get better but it actually got progressivly worse, so much so i went to A&E. Although my back was very painful it was my leg that was bothereing me the most. the A&E DR checked my leg and said it was ok NAD.

I went to my GP, who suggested doppler test = again NAD

A&E AGAIN= TESTED FOR BAKERS CYST AND DVT AGAIN NAD.

THE PAIN IN MY BACK, NECK SHOULDER AND ARMS BECAME SO MUCH WORSE THAT I WAS AT THE GP NEARLY EVERY WEEK IN TEARS, I REFERRED MYSELF TO THE PHTSIO IN 2 NEARBY TOWNS AND NEITHER COULD WORK OUT WHY I HAD SO MUCH PAIN IN MY LEG. ONE OF THE GPS REFERRED ME TO A MUCKULAR SKELETAL SPECIALSIT WHO THOUGHT THIS MAY BE DOWN TO A PROBLE WITH MY BACK AND HE SENT ME FOR AN MRI. AS YOU KNOW ONCE THE RESULTS COME IN , EVERTHING MOVES FAIRLY QUICKLY. I HAD SURGERY AND FULL REMOVAL OF THIS TUMOUR  AND MADE A VERY GOOD NEUROLOGICAL AND PHYSICAL RECOVERY.

I AM GOING TO HAVE MY 3 MONTLY MRI IN THE NEXT FEW WEEKS AND I AM AFRAID IT MAY HAVE COME BACK, MY LEFT LEG NOW JERKS OCCASIONALLY AND THIS STARTED A FEW DAYS AGO (WAS CONSTANT PRIOR TO SURGERY)  I AWOKE WITH PAIN IN MY NECK AND SHOULDER TODAY.....I WONDER IF I AM BECOMMING A PARANOID WRECK OR IF I HAVE JUST SLEPT FUNNY LAST NIGHT.

I DONT REALLY FEEL THIS IS OVER FOR ME YET BUT ALL AROUND ME PEOPLE SEEM TO THINK I SHOULD BE HAPPY IT ALL WENT WELL, STOP TALKING ABOUT IT, STOP THINKING ABOUT IT AND MOVE ON. I STILL HAVE A LOT TO SAY!

 

Hi, I was diagnosed June 30th 2010 after removal of my myxopapillary ependemoma who 1 at l2. It was 1 cm. I had 26 rounds of radiation and have been cancer free since. Does anyone know the reoccurance rate and survivor rate. I was told that in 98%of the time it does not come back. Had anyone heard different

lsfunk01 said:

hi there, i have just joined

hi there, i have just joined this group, i was diagnosed with grade 2 myxopapillary ependymoma on the cauda equina, I awoke in severe pain one sunday morning at the beginning of last may 2013...i was on my way to do a bank shift at the local cancer hospice where i worked occasionally. I also have a main full time job in a similar line of work in the care industry. i assumed i had slept funny and on getting out of bed i noticed a severe pain in the back of my left calf, again i assumed it may be a cramp. this pain continued for several weeks and was requiring analgesia, hot water bottles etc. i thought this would get better but it actually got progressivly worse, so much so i went to A&E. Although my back was very painful it was my leg that was bothereing me the most. the A&E DR checked my leg and said it was ok NAD.

I went to my GP, who suggested doppler test = again NAD

A&E AGAIN= TESTED FOR BAKERS CYST AND DVT AGAIN NAD.

THE PAIN IN MY BACK, NECK SHOULDER AND ARMS BECAME SO MUCH WORSE THAT I WAS AT THE GP NEARLY EVERY WEEK IN TEARS, I REFERRED MYSELF TO THE PHTSIO IN 2 NEARBY TOWNS AND NEITHER COULD WORK OUT WHY I HAD SO MUCH PAIN IN MY LEG. ONE OF THE GPS REFERRED ME TO A MUCKULAR SKELETAL SPECIALSIT WHO THOUGHT THIS MAY BE DOWN TO A PROBLE WITH MY BACK AND HE SENT ME FOR AN MRI. AS YOU KNOW ONCE THE RESULTS COME IN , EVERTHING MOVES FAIRLY QUICKLY. I HAD SURGERY AND FULL REMOVAL OF THIS TUMOUR  AND MADE A VERY GOOD NEUROLOGICAL AND PHYSICAL RECOVERY.

I AM GOING TO HAVE MY 3 MONTLY MRI IN THE NEXT FEW WEEKS AND I AM AFRAID IT MAY HAVE COME BACK, MY LEFT LEG NOW JERKS OCCASIONALLY AND THIS STARTED A FEW DAYS AGO (WAS CONSTANT PRIOR TO SURGERY)  I AWOKE WITH PAIN IN MY NECK AND SHOULDER TODAY.....I WONDER IF I AM BECOMMING A PARANOID WRECK OR IF I HAVE JUST SLEPT FUNNY LAST NIGHT.

I DONT REALLY FEEL THIS IS OVER FOR ME YET BUT ALL AROUND ME PEOPLE SEEM TO THINK I SHOULD BE HAPPY IT ALL WENT WELL, STOP TALKING ABOUT IT, STOP THINKING ABOUT IT AND MOVE ON. I STILL HAVE A LOT TO SAY!

 

Hi, I was diagnosed June 30th 2010 after removal of my myxopapillary ependemoma who 1 at l2. It was 1 cm. I had 26 rounds of radiation and have been cancer free since. Does anyone know the reoccurance rate and survivor rate. I was told that in 98%of the time it does not come back. Had anyone heard different

Hi, 

I found out I had a spinal myxopapillary ependymoma when I was 17 during my senior year of highschool.  I had surgery almost immediately.  I am 19 now but still know so little about what I actually had.  I am doing fine, but am just curious.  Was it cancer? I asked in the hospital and recieved two different answers.  

samhutchinson13 said:

Spinal

Hi, 

 

I found out I had a spinal myxopapillary ependymoma when I was 17 during my senior year of highschool.  I had surgery almost immediately.  I am 19 now but still know so little about what I actually had.  I am doing fine, but am just curious.  Was it cancer? I asked in the hospital and recieved two different answers.  

Through my research with the Spinal Cord Tumor Association and attending the bi yearly conferences, I have heard the Myxopapillary Ependymomas are not officially considered to be cancer unless they are grade 3 or 4.  Most are grade 1 or 2 and therefore not cancer.  However, the damage they do to the spinal cord can be life changing.  As can any spinal cord injury.

Davenkel said:

Mxopappilary Ependymoma

While myxopapillary Ependymomas are extremely rare, there are many people, including myself, who have had the unfortunate experience on have this tumor grow on their spinal cord.  Many of them are on the spinal cord tumor association website linked below.

http://www.spinalcordtumor.org/

 

 

 

I can't find where I can make my own post. I was diagnosed with this rare cancer 10 years ago when I was 19 so 2004-2005. I too was told I was the first person in the US to have this cancer. I was receiving treatment at Mass General in Boston,MA all area hospital had a meeting on my case and came up with no answers. I've had 4 surgeries to remove malignant tumors and soft tissue that was also diseased. I've had my whole tail bone removed that has increased my back pain 100x. I haven't had an Mri in 4 years because mass general doesn't take my insurance anymore. I live in pain every day. Between my back, legs, and the migraines I was told it's all fathom pain. I'm relieved to know there are more people out there in my place but I wish this on no one. Is anyone in the Massachusetts area that can direct me to a great doctor. They told me they wouldn't do radiation or chemo until I'm in my 40s fearing it would kill my liver and kidney. When I was first diagnosed doctors told me not to worry this cancer doesn't spread. By my second Mri they quickly learned that it does. I've let this disease grow in me for the last 4 years I need to take back control. Any help please

Dawnmarie

kalaoamom said:

my son
Lisa,
My 13 yrs old son has been dealing with this from the age of 8 when he was diagnosed with his first myxopapillary ependymoma at L1-L2. Last year they found another. The doctors called it "a downward metastatic spread of a benign tumor" This time at L5-S1. The first tumor was very "sausage" like and was removed whole. The second tumor surrounded major sacral nerves so they had to leave in a 6mm mass. We have been told radiation at this time with him reaching puberty, is not advisable. He just had his MRI and it is showing a new area of enhancement...Just in the last few weeks he is experiencing pain in his back again when he becomes very active, ie runs 2 miles, surfs etc. The doctors we have dealt with have never referred to this as CANCER. What have you been told? Are you doctors experienced with this type of rare tumor? My sons neuro surgeon suggested finding somewhere that had experience and research with these tumors as they are quite rare. Currently we have Dr Kelly at the John Wayne Cancer Center reviewing his case every six months since last surgery. Now that there is some question of reoccurrence his next MRI will only be 8 weeks from his last.

I hope your MRI shows no new activity and your pain is from the surgery scaring. My son did have no pain for 3 years before it came back. The best thing you can do is stay positive and just take each day as it comes. (living this as I have StageIV cancer)

I wish you all the best

Diane

Hi , new to this site I had posted my sons story on another selection so I am not going to repeat it but give you a brief story. My son Nicholas was diagnosed with MXE at age 7 when his symptoms came about severe pain in back . MRI showed mxe at his L5to S1 . A doctor in NY preformed a gross resection and hopefully got it all. It hemoraged at the time which probably caused the pain. Unfortunatley it has come back age 10 in the same area with three small nodulars. We were told by our very highly recognized neurosurgeon that going back in was not an option for him. He suggested proton radiation therapy. We are hesistant because of his young age and long term effects. We refused to believe that this is the only option . We are seeing other neurosurgeons and cancercenters to discuss a treatment plan. We are looking into a Holistic approach, immunetherapy and also want to discuss his cord blood stem cells saved at birth playing a role in his treatment pan. We remain open to any suggests people have learned , but no two bodies are alike and will react differently to treatments. We are looking into Sloan Kettering, John Hopkins, MD Anderson and Boston General. Holistic approach in nutrition in Utah where blood is analyzed to plan diet to make tumor enviroment unwanted. There is the cern foundation for MXE.  There are clinics in Arizona and we are skeptical about the burzinski clinic. Good luck and God Bless

jennyjo8365 said:

is this group still active???

Just wondering if anyone is out here.  Looks like there hasn't been a post since 2016. I, age 52, had a MPE removed last August and am just starting to see a radiation oncologist. 

Hi - I just found this group this morning. I am 51, and had an MPE removed from my lumbar spine 12/2017. They didn't recommend radiation, but I do have to have a follow-up MRI in August. I'm starting to get that same nagging pain back... Wondering if anyone that has had the MPE grow back - how quickly it came back.