myxopapillary Ependymoma

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  • fineas70
    fineas70 Member Posts: 5

    Myxopapillary Ependymoma
    Hello,
    My son was diagnosed with ME when he was 15 years old. He also had it in the cauda equina. Unfortunately, they did not get it all....and we opted to radiate the area to kill any residual tumour. He had a recurrence two years later in his thorasic spine....6 tiny tumours. they only removed one....and again radiated the rest of his spine. He had another recurrence 6 months later in his medulla - a 2mm tumour..no surgery, just radiation. it has been two years and now the thorasic tumour that they tried to remove has grown by 1mm. We are at a loss to know what to do. He is going to be 20 next month and we don't know where to go or whom to contact.
    Do you have any more information??

    Laurie Fitz-Henry
    Canada

    myxopapillary ependymoma group

    Laurie - My son also has myxopapillary ependymoma.  He is 7 years old. I recently started a group for parents, grandparents and patient advocates to share treatment information and ideas for children who have myxopapillary ependymoma.  Please join us here:  https://www.facebook.com/groups/myxopapillary/

    -Heidi
  • fineas70
    fineas70 Member Posts: 5
    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

    myxopapillary ependymoma group

    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.

  • fineas70
    fineas70 Member Posts: 5

    Youngest ever diagnosed
    My little baby boy was diagnosed with myxopapillary ependynoma at 10 months old, the drs were dumbfounded as he is the youngest person ever diagnosed with it. Because he is so small, they aren't sure how to treat it. He has sedated MRIs every four months. As a parent of such a young child, I wonder how to feel and what to think? They say it is slow growing, but his on in his spinal conus and on nerve endings below. Can someone tell me how they would deal with it?
    thank you!
    Gina

    pediatric myxo group

    How is he doing now?  What treatments has he tried?  Join our parents group for pediatric myxopapillary: My son also has it and he is 7.  https://www.facebook.com/groups/myxopapillary/

     

    -Heidi

     

  • mysonsmom2
    mysonsmom2 Member Posts: 2
    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.

    myx. ependymoma spine

    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!

  • mysonsmom2
    mysonsmom2 Member Posts: 2
    sjmeyer said:

    myxopapillary Ependymoma
    In May of 2006 I was diagnosed with a golf ball sized Myxopapillary Ependymoma tumor in the cauda equina of my spine. I was 35 years old at the time. Consequently, I had pretty severe cauda equina syndrome for a while before diagnosis. MRI is what found it... after I told my family doctor that laying down made it real bad... and my legs were numb in the morning along with having no control over lower bodily functions. I had surgery 2 days later... never left the hospital after diagnosis. St. Joseph's in Phoenix Arizona. A doctor from Barrow's Neurological performed the surgery to remove the tumor from the cauda equina (which looks like a horses tail... so it must have been difficult). I received an infection from the first surgery and was back under the knife less than 2 weeks later once it was discovered. ICU for 8 days... spinal tap... terrible stuff. I received no radiation treatment. It is now Dec 2011, I'm 40, and I had my most recent of many follow MRIs in October. Clean slate... no reoccurance. I pray for all of you out there that have had more difficulties than I with this cancer.

    Best Regards,
    Steve

    steve...you there?

    my sons dr won't operate...he has a large tumor at the S1-L5 that is causing him a lot of pain.  my son is disabled and i'm worried that's why they won't operate.  he has multiple tumors but this one is   the worst...and only in his spine.  at this point his quality of life is the most important thing, no matter how much time they give him.  I am amazed at how quickly everything went for you...absolutely amazed!  we are going into our third month and haven't seen an oncologist.

     

     

  • lsfunk01
    lsfunk01 Member Posts: 1
    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!

     

  • bgrimaudo1
    bgrimaudo1 Member Posts: 5
    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!

     

    survivor

    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

  • bgrimaudo1
    bgrimaudo1 Member Posts: 5
    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!

     

    survivor

    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

  • bgrimaudo1
    bgrimaudo1 Member Posts: 5
    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!

     

    survivor

    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

  • bgrimaudo1
    bgrimaudo1 Member Posts: 5
    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!

     

    survivor

    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

  • bgrimaudo1
    bgrimaudo1 Member Posts: 5
    DJ1985 said:

    I beat it and so can you!
    By the grace of God I beat the same kind of cancer your husband has. It was over 15 years ago when I was only 12, and I beat it! No matter what struggles I have in life, it helps you realize everyday is a gift, and I thank God for my life completely. I hope only the best for you and your family. You can do it, as tough as it gets!! As sappy as that all sounds, I mean every word of it. I now that when I was sick, all I wanted was to hear someone tell me that they had beat it. I'm living proof, you can.

    Dylan

    survival

    Hi Dylan

     

    just found this website. Can you tell me how you are doing now? I am 4 years cancer free and was told it was not a reoccuring cancer. Mine was back in 2010. Just trying to figure out my odds.

  • samhutchinson13
    samhutchinson13 Member Posts: 1
    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.  

  • Davenkel
    Davenkel Member Posts: 3

    survivor

    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

    Myxopapillary Ependymoma recurrence rates

    If the myxopapillary epenymoma is removed in one piece the recurrence rate is very low, probably close to the 98% you were quoted.  However, if the tumor is removed piecemeal, or piece by piece, the recurrence rate I have been told is closer to 20%

  • Davenkel
    Davenkel Member Posts: 3

    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.  

    Cancer or Not?

    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
    Davenkel Member Posts: 3
    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/

     

     

     

  • dawnmarie1986
    dawnmarie1986 Member Posts: 1
    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/

     

     

     

    new to this site

    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

  • Razz1
    Razz1 Member Posts: 1
    myxopapillary ependymoma

    Hello,

    I had surgery to remove my tumor on December 1st.  It was a 4cm and all that was visible was removed.  I am now in radiation as there was a small percentage that was too dangerous to remove and the Dr.s felt it was a small enough area to finish with radiation.  I have been blessed as I have had no side effects from the surgery until now.  I have been in radiation for 2 1/2 weeks and I have started having back pain in my lower back at and below the incision.  I also have pain on the right side of my back from just below my shoulder blade to lower back.  That pain starts in the evening and persists through the night ( I need a pain pill, but manage with Advil..don't want to mask the symptoms + side effects).  I usually need to sleep proped up.   I also have extreme numbness in my hands (extreme is at night) and tingling in my toes.  Today, it has progressed to a light tingling all over my body, head to toe.   My Radiation Oncologist says none of this has anything to do with the radiation.  I talked to him today in detail and I called the office again later after the tingling started all over.  I also called my surgeon who was unable to speak with me today so I talked to the nurse who was less than supportive and told me she would see if the PA could call me back tomorrow.  I told her I did not think I should wait until tomorrow.  So, when I called the Rad Oncologist the nurse called the surgeon's office for me and got an appointment for Monday morning ( today is Thursday).  I mentioned to her that the nurse at the surgeons office was not very helpful.  ;/

    I also have an auto immune disease called Sjogrens.  I have secondary and the RA strand.  These symptonms above are not related to the above as my pain with Sjgrens has been arthritic. 

    If anyone has any information, thoughts on my symptoms or similar experience I would appreciate it so much.  I have read all of your posts and pray for each of you.

    Blessings!

  • Nickyskates77
    Nickyskates77 Member Posts: 2
    edited March 2017 #59
    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

    MXE

    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
    jennyjo8365 Member Posts: 1
    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. 

  • ConLouSmith
    ConLouSmith Member Posts: 1

    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

    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.