CSN Login
Members Online: 14

myxopapillary Ependymoma

hotdoggy03
Posts: 2
Joined: Feb 2010

Hello everyone, Im happily married with 3 beautiful boys and i just found out i have a cancer called myxopapillary ependymoma(tumor in spine). I start radiation tuesday, but i was just wondering if anyone has had this or knows someone who has. Im pretty scared to be goin through this, im young and just wanna get better, this has really changed how i function with day to day activities.

thanx
Stephanie

braintumorBruce
Posts: 1
Joined: Feb 2010

Hi;
My name is Bruce, and I facilitate an online support group for people affected by adult ependymomas. About 60% of us have had abrain tumor, while the other 40% have suffered a spinal ependymoma. Being a brain person, I am not the best person to answer your questions about spinal ependymomas, but I suggest you join our group:

http://braintrust.org/adultependymoma.htm

Also, I have written a website that you may find beneficial:
http://sites.google.com/site/adultependymoma/

The BIGGEST thing is for you NOT to worry. It will do no good!

Email me at brub58@comcast.net if you need help or want to just "talk"

Oh yeah - I am a 15 year survivor.

Bruce

hotdoggy03
Posts: 2
Joined: Feb 2010

hi bruce, i just entered my info and said it was sending. thanx for the info, i know nothing about this cancer and glad to see theres a support group out there for me. Did i mention im only 24 years old:( i start radiation tuesday and hopefully it will relieve my numbness in legs, and feet, hopefully.

okienmn
Posts: 1
Joined: Jul 2010

Hi Stephanie -
At 21 (unmarried and no children), I was diagnosed with the same type of ependymoma as you. The tumor had hemorrhaged and because of the internal bleeding that was why I had so much back pain, couldn't urinate, etc. After the surgery (T12-L5) where the surgeons tried to get as much out as they could, I had radiation too. Years later, my MRIs showed that the tumor was back but was lower - another couple of years have passed by, now I'm slated to get surgery again.

I now have a wonderful family too and so I can relate when you say you are feeling scared and just want to get better too. As I reflect back on how I felt almost 11 years ago, I think about how I was in complete denial of what I had and just blew everything off, saying it wasn't a big deal - but deep down I was just a scared young person that didn't want to admit having a glioma. I think it's great that you are seeking out support from others and trying to understand more to learn more to ultimately feel a sense of hope and get better. Stay positive as I am sure you'll do well with the radiation (don't know where your tumor is located but the radiation sessions I had weren't that bad, just made me tired with a little bit of nausea.) You'll get better :)

aykt36
Posts: 28
Joined: Jun 2010

thanks

AMGS
Posts: 1
Joined: Sep 2010

Hi, Stephanie,
I hope your radiation treatments went well. I have had those also, about 15 years ago and have just now had some fall-out from those treatments. I am almost 70, so am much farther along in life, but have had a terrible time with the tumors. I have had 5 back surgeries to debulk the tumor and had radiation treatments twice. I am now in a clinical trial at M.D. Anderson with a new protocol for treatment that is showing some very encouraging results. If you are interested, let me know and I'll send you more information about it. BTW, I am now a paraplegic, and in a wheelchair. Fortunately, I have a very supportive husband and terrific friends. I managed to remain ambulatory for almost 14 years after I was first diagnosed. The tumor extends from S1 up to T12, so it is quite massive. The surgeries were very helpful, but after the first one, if you have any remaining, there is the possibility of it reseeding, even up the spine.

Good luck,
AMGS

gclark
Posts: 4
Joined: Jan 2011

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.

mysonsmom2
Posts: 2
Joined: Oct 2013

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!

gclark
Posts: 4
Joined: Jan 2011

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.

gclark
Posts: 4
Joined: Jan 2011

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.

gclark
Posts: 4
Joined: Jan 2011

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.

lav593
Posts: 1
Joined: Feb 2011

Hi Stephanie,

My name is Lisa and I am 19 years old. Ironically, last year around this time I was also diagnosed with a spinal myxopapillary ependymoma. I had to withdraw from school to have surgery 2 days after my 19th birthday but like "okienmn", I also didn't think too much of it, more of an obstacle rather than a life changing experience. I had moderate lower back pain for about 3 years in high school, assuming it was all from sports I played and I learned to deal with it to the point where it became impossible to sleep at night because the pain was so severe. Finally I got an MRI and had surgery less than 2 months later. Since it all happened so fast for me, I never really had a chance to research or look into options. Had I done that, I might have chosen to have radiation therapy along with the surgery to reduce the risk of it potentially coming back. The recovery process was much faster than anticipated but now that I have been back at school for about 6 months now, I am started to develop worsening pain and find difficulty sleeping again. I am due for an MRI and I am quite nervous for what the results might show. However, this is mainly because of what I have been reading on the internet about recurrence rates and I was not expecting them to be so high. I am hopeful though as you should be too. We are both young, so our ability to recover is much faster than that of someone older. Nevertheless, if I have learned anything in the past year it is not to believe what you read on the internet. If you have questions, call your doctor or surgeon. They will give you direct personal answers where the internet is typically composed of unreliable sources. I'm sure by now you are as well informed as I am, but if you ever check this site at all still let me know how you're doing. I am curious as to whether others commonly experience pain again after long periods of no pain after surgery.

Lisa

kalaoamom
Posts: 1
Joined: Mar 2011

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

Oboe Mom
Posts: 2
Joined: Jul 2011

Kalaoamom,
My son is 13 as well and was diagnosed with a myxopapillary ependymoma at the L1-L3 this past May. He had surgery to remove it. Like your son's tumor, his was sausage shape and came out whole. We are planning to do 30 treatments of radiation therapy. Did you do therapy the first time?
I'll pray for your son, and everyone else on this site as well.
~Anita

MySweetSon
Posts: 2
Joined: Aug 2011

Hi Diane,

My 11 yr old son also had this cancer (they called it cancer from Day 1). We are in PA. We went to Children's Hospital Of Philadelphia and received excellent care. He had two tumers in his spine. The surgeries were successful....all of it was removed. We were encouraged to get radiation to the brain and spine, and we were all set to get Proton Radiation, when a Dr. from Boston Mass. General called me (we had sent them our son's MRI's and medical records for another opinion). He told us, that since the operation was successful (removed the tumor completely) and since these are slow growing tumors, we had a unique window of opportunity....we could consider not doing the radiation since he was about to hit puberty. On one hand Dr's were saying 'Do the radiation.." and on the other Dr.'s were saying "It is not worth the risk at this time". We decided to not do the radiation and just watch for any new tumors with MRI's every 3 months, then every 4 months.

Also, we were told that once radiation is done on an area, it cannot be done again....so we figured we would not waste the opportunity to use radiation when all MRI"S and reports were coming back showing no tumor or cancer. Of course, there is a risk of cells being so small they would not show on an MRI and since they travel in the Spinal Fluid, there was a risk of it going to the brain.

During that time I learned about the Burzynski Clinic that treats chilhood cancers without toxic effects. They have a patient list and I was able to talk to a Mom whose son had Myxopapillary Ependymoma and was treated there. I have talked personally with many cancer patients or their parents. His book "The Burzynski Breakthough" and his website are amazing resources of information: http://www.burzynskiclinic.com/ . Dr. Burznski has a set of blood tests that tests for cancer at the cellular level. We have been getting these test for 2 years, which has given me the extra confidence that the cancer was not coming back anytime soon. Only recently did a blood test show that one test was starting to get a little high, but still within normal limits.

It is now 2 years later and just last week a tiny area that could be tumor is showing up in the latest MRI. The good news is it's small...and we are catching it early. We will hear next week from the surgeon, and we are also strongly considering the Bryzinski Clinic. Our oncologist is suggesting full brain and spine radiation. I have read that sometimes it never comes back after the radiation is done, and then, as you may have read on this site, it can comeback even with the radiation. This is why we are considering the Bryzinski Clinic--it is non toxic. You really must read the patient stories and contact the patient's themselves to really understand the amazing work this dr. is doing. He is also on Facebook. He was also on Larry King , and Suzanne Somers wrote about him in her book "KNOCKOUT". (I know, I know, why read anything medical from Suzanne Somers, but she had breast cancer and wrote a book on the lesser known but highly effective cancer treatments.)

I would welcome any questions or comments. As you all know, this is a unique tumor and these posts are so informative when we share all of our experiences.

Blessings to all,
Kathy

mainemom
Posts: 1
Joined: Oct 2011

My son was 20 when he was first diagnosed with a malignant spinal tumor. Although I suspect that we had signs of it at least two years before but the doctors kept diagnosing it as a disk problem and since he played rugby we believed that was the cause of his pain. After experiencing severe pain in his knees and ankles they finally did an MRI and immediately found a fairly large tumor in his spine. He immediately had laminectomy surgery and there was gross total removal of the primary tumor. There were also dropped metastatic lesions near the base of his spine that they did not attempt to remove because of the chance of paralyzation. They felt these 3 mestatic lesions were very low grade and he would fare better wihout surgery in that area. He developed a neurogenic bladder and bowel as a result of the tumor and surgery. After consulting with three major hosptial neuro-oncologists--The Brain Tumor Center at Duke University, Sloan Kettering and MD Anderson--based on their recommendations he chose not to follw-up with radiation and follow a course of surveillance. He was a patient at Duke and had yearly MRI follow-ups until he lost his insurance at age 25. He had three years without MRIs even though he tried to no avail to get help at Duke or through the state. At age 29, when he got extremely ill from a bladder infection, he finally obtained an HMO through a state agency and was able to get an MRI. They found the tumors were back with a vengeance. He has completed 45 sessions of radiation (which made him extremely sick) and now after nearly 7 months, the MRI's show very minimal reduction in the tumors. He has been told there is really no other options available to him at this time. The hope is that the radiation has arrested growth for awhile. It is so frustrating. He is being referred to a medical oncologist through the HMO but there doesn't seem to be any good options available at this time.

latanya lynn
Posts: 4
Joined: May 2011

@ Lisa you sound just like me I had Mixopapillary Ependymoma at the age of 12 I was 3 weeks away from my bday! At that time I was in Fact the 1st girl to have ever had this type of cancer.. I had the same problems as you I ended up dropping out of school at the age of 16. I need to have a fusion done asap, Im 22 by the way, but its hard bc I dont get any type of government help!

MitulD
Posts: 1
Joined: Mar 2011

Hey Steph.

I'm just recovering from an operation as I had exactly the same thing. All I can say to you is be strong for your hubby and your kids and you'll be fine. All I could do whilst in hospital was be positive cos I knew I was gonna get through it and knew I had to for me and my loved once. I'm 25 and it's not nice finding out something like that at our age but all I can say to you is be positive and you'll get through it.

All the best to you girl :-)

latanya lynn
Posts: 4
Joined: May 2011

I was 12 when i found out I had it 3 weeks later I was at Childrens Hospital in New Orleans Louisiana having surgrey. Im 22 years old now an Im still in pain. I have have a bad spine now I have to have a fusion done to straighten it out.. When I first caught this it was only 2 other people that had it an Im so amazed on how many people have it now!! God bless you all for what your going through!

ghull29
Posts: 2
Joined: May 2011

I was diagnosed with Sacrococcygeal Myxopapillary Ependymoma in 1995, I was 32, I had it removed and then 30 radiation treatments. They told me that if I was cancer free for ten years I would be fine. It was once again discovered in 2007, I had surgery again. I now have tumors in 14 different areas, plus many nodules in my lungs with no known treatments. I have been through some different chemo treatments and clinical drug studies. This is my experience with this Damn Cancer.....

anthony john
Posts: 3
Joined: Jun 2011

Hi there

My son has the same cancer you have and in the same are. Went to his lung and took out a nodule. July 7th going in for surgery to remove another regrowth in pelvic area and take out two more nodules in lung. I have not talked to anybody with similar diagnosis. Were are you from?

Tony

tonyga@maine.rr.com

ghull29
Posts: 2
Joined: May 2011

I am in St. Louis, I have had resection surgeries twice and they refuse to do any more. I just had surgery to put in a Pleurx Drainage Catheter in my left lung. They could only put it in a single pocket due to the nodules and tumors. This was so i can drain fluid in the lung. Feel free to contact me anytime @ ghull29@aol.com

Gail

MasonChristian
Posts: 1
Joined: Aug 2011

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

Oboe Mom
Posts: 2
Joined: Jul 2011

Gina,
I'm so sorry to hear about what you are going through. There is nothing worse than having a child who is compromised. Please know that we will be praying for your son and your family. I don't know where you are, but you might want to ask your doctors to contact Mass General Hospital in Boston. They have some experience w/ these tumors. There is a Dr. David Ebb there who is supposed to be very good. They have a tumor review board and provide proton radiation for those who qualify. My son's records were reviewed there. Although I didn't agree w/ their suggestion, their input was helpful. Dr. Ebb's number is 617-726-2737. Also, Bruce (see earlier posts) has a great website w/ some really good links. You should check it out. One of the links is for spinal tumors and that site has a section for children w/ spinal tumors.
Be well,
Anita

MySweetSon
Posts: 2
Joined: Aug 2011

Hello Gina,

I am in PA, near Philadelphia. My son had this cancer at age 11 in this spine.

You might be very very interested in the work of DR. S. BURZYNSKI:

http://www.burzynskiclinic.com/

He specializes in children with cancers. His treatment is NON TOXIC. You can see the patient lists and email/talk to the patient's themselves regarding their treatment there. I have talked with many parents whose children went there.

It is worth a look at the amzing work he has done with children.

Yes, these tumors are slow growing, but they do eventually grow and can press on spinal nerves or spread. My son had a surgery and they were removed without any damage to any nerves. The tumor was encased, like a hotdog. We were encouraged by one set of oncologists at Childrens Hospital of Philadelphia to fully radiate his brain and spine, and then another set of oncologists at Mass General in Boston said that since these are slow growing and since the surgery removed it all, we had a window of opportunity to let him get though puberty and not radiate him at that time.

It is 2 years later and only now is a tiny dot appearing on the MRI that could be a new tumor. We are considering surgery if it grows, and the Burzynski Clinic.

Hugs, Love, Prayers and Blessings to you and your little boy. Please keep us posted on him.
Kind Regards,
Kathy
kzrkata@aol.com

fineas70
Posts: 5
Joined: Sep 2012

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

 

anthony john
Posts: 3
Joined: Jun 2011

Hi Stephanie

anthony john
Posts: 3
Joined: Jun 2011

Hi Stephanie

How are things going for you? Just wondering if your cancer went to your lungs, as my son has the same cancer and it went to his lung. I have not talked to anybody about this. I would like to talk to you if you could.

tonyga@maine.rr.com

Tony

mystonia
Posts: 1
Joined: Aug 2011

Stephanie,
I am a mom with 4 kids and in June of 2009 I was diagnosed with intramedullary ependymoma C1-T2. I found a wonderful neurosurgeon an hour away who was able to do a total resection. So far I've been able to avoid having to do radiation, but have been warned that if anything shows up again on my MRI's I will have to start.
After surgery I had to learn how to walk again and I most of the use of both hands (I now type with index fingers only). Its been a long road and many times I've wondered if it's really worth it, but I look at my kids, smile, and continue on.
Please hang in there and know you're not alone.
Kelly

IMNOTMAGGIE
Posts: 1
Joined: Aug 2011

I never knew this site existed and I'm so happy I found it. I've always felt that none of my friends or family could understand what I've been through and they don't understand the daily struggles I have. In 2007 my left hand went numb and after insurance mandated useless physical therapy (because other than the pain in my neck/back and the numbness in my hand I had none of the other typical signs of a tumor) I finally had an MRI which showed it was either an ependymoma or an astrocytoma between C3 and T1.The neurosurgeon wasn't sure which is was until he had me on the table. It turned out to be a Grade II Ependymoma and after the neurosurgeon removed the tumor I spent months in rehab learning to walk and use my hands and regain my independence. I also had additional surgeries because of infection. The surgeon eventually had to remove the top part of my spinal bone from C3 to about T4 and nothing was put in its place. Has anyone else had bone removed and how do you deal with the fear that you will get hurt and there's nothing to protect your spinal cord?

The surgeon also says a portion of my intestines are paralyzed as a result of the tumor resection which causes much discomfort and makes it difficult to digest food and have regular bowel movements. I have seen three gastrointerologists and none know what to do to help keep things moving and relieve my discomfort. I was on reglan for a long time but it caused bad muscle spasms. Now I don't know what to do and the GI's are stumped. I need to find something that will relieve this discomfort. I can live with the neck/back pain and the numbness in the lower extremities but it's so hard feeling like I don't want to eat because it causes so much discomfort.

sjmeyer
Posts: 1
Joined: Dec 2011

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

sunshine8062
Posts: 1
Joined: May 2011

I had my first occurance of this tumor in 1994. It had been growing for who knows how many years (I was 32, and my daughter was just 2 years old). It was surgically removed with no real problems. Then at the end of the '90s I started noticing little things happening in my left foot. Of course I ignored them, until late 2007 when I went in for something unrelated and my doctor said I had better get an MRI to check on my spine. Sure enough the tumor had come back and it was removed in January of 2008. I have trouble with my left foot and leg. When I started having symptoms again in 2010, my neurosurgeon sent me to MD Anderson in Houston. That is when I was told it was cancer. They have been watching it for the last two years. Just in the last couple of months the symptoms have traveled to my right foot. Much more painful than what is in my left foot. Back hurts alot in the spot where the tumor is. I am heading down to Houston next Wed. (5-16-12) to find out what they are going to do this time. I am afraid of what will happen as a result of this surgery. What damage has the tumor caused this time? I will turn 50 next week, the day before I go back down to Houston. Not really what I had planned to do when I reached the half century mark. I trust in God, and the wonderfull doctors and nurses at MDA though.

rosaelena
Posts: 1
Joined: Jul 2012

My 42 year old husband was diagnosed earlier this year and just had his tumor removed at MD Anderson by Dr. Rhines. We are from Atlanta and found MD Anderson to be the best choice for us. He had the surgery on 6/22/2012 and is now recuperating in Houston. Luckily we are all able to be with him. Originally they estimated the surgery could take up to 10 hours fortunately they were able to remove the tumor completely and complete the surgery within 6 hours. After the neurosurgeon removed the tumor a plastic surgeon (Dr. Clemmons) closed the incision. We have found that they have been very thourough with his care. This coming week they should remove the drains and we can hopefully head back home to Atlanta.
They are not recommending radiation at this time. They will follow up with MRI's every three months for the next few years and then go to twice a year.
My husband is in a lot of pain from the surgery, but the pain he had in his legs, and lower body because of the tumor is all gone.
I hope and pray this will be the end of this tumor, but of course we will monitor it closely. I think you will be in great hands at MD Anderson.
I will be praying for you and your family.

Good Luck

DJ1985
Posts: 3
Joined: Aug 2012

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

bgrimaudo1
Posts: 5
Joined: Jun 2014

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.

DJ1985
Posts: 3
Joined: Aug 2012

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

MPE2009
Posts: 1
Joined: Jan 2013

Hi, I traveled from Chicago to be treated by Dr. Rhines. He removed my Myxopapilary Ependymoma 8cm tumor from my sacrum on 6/10/2009. The wound split wide open a week after the surgery and remained open until October of that year. In the meantime, no further action was taken after the surgery waiting for the wound to close. Dr. Rhines told me to check back with in 3 months to decide what to do. Tumor came back to original size in the same place by December. If I would have been able to have radiation right after surgery, I would probably have been done with this cancer. Instead, I am now dealing with uncontrolable metastis. Let me know if you have any questions for me. Sounds like you are starting on a road I have traveled. dave0109@yahoo.com

BTW: I am 43 today.

mysonsmom2
Posts: 2
Joined: Oct 2013

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.

 

 

JoJoJodyJo
Posts: 1
Joined: May 2012

Hello everyone. I had an intradural ME from L4 to S1 removed 22 years ago. It took me three years to get diagnosed because MRI's were not prevalent back then. As a matter of fact, it took my threatening a doctor with a malpractice suit to get it.

When they finally realized something really was wrong with me, I was refered to a neurosurgeon named Dr. So at Kaiser Permanente in Anaheim. I found out the tumor was attached to an artery in the cauda equina area and was hemorrhaging, which was why the pain was horrific. Dr So removed it piecemeal because the cauda equina roots were all around it. He got it all though, and if anyone has Kaiser, I highly recommend him.

I was blessed to have made a full and complete recovery. I have had no recurrence and the occasional numbness to my feet and toes are due to two discs that I ruptured 15 years after surgery while water skiing.

Back when I had it, it was a very rare thing to have because MRI's aren't common like they are now. There was no internet available, so the information at our fingertips now just wasn't there. Because of this, it practically took an act of congress for me to get my first MRI. Once I was diagnosed, and after I saw Dr. So, I went to several other doctors for second, third opinions. Not one of them knew what to do about my tumor and could offer no help or resources for me. Every one of them said they'd never seen anything like it.

I never had any radiation or other treatment at all, and only today learned that ME is cancer and I'm a cancer survivor (I honestly had no idea).

I just wanted to stop in and say that I'm here, I'm healthy, and I'm telling you this thing can be beat. It's tough, but we are tougher. Don't ever forget or underestimate the power of the mind and will in addition to all the tools that modern medicine has to offer. You can't ever give up and you must always, always, fight this thing. I know it is beatable because I kicked it's butt with a great doctor, a ton of sheer will power, and a mountain of God's blessing.

DJ1985
Posts: 3
Joined: Aug 2012

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

fineas70
Posts: 5
Joined: Sep 2012

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.

  https://www.facebook.com/groups/myxopapillary/

-Heidi

 

Lauriefitz
Posts: 3
Joined: Aug 2010

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

Lauriefitz
Posts: 3
Joined: Aug 2010

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

kel-liy
Posts: 1
Joined: Oct 2012

I am 27 I found out I had the same tumor on my spine between L1-L2. I started having severe pain right after I had my daughter when I was 23. I went to several doctors and to the ER every couple days because it hurt to move, I could not make it thru the day without crying. Finally when my daughter was 3 months old they did an mri and found my tumor my doctor never advised me as it being cancer
I had my surgery about 2 weeks after they found it. It was wrapped in all of my nerves but they were able to remove the entire tumor like others it looked like a sausage. The surgery was over 11 hours I couldn't pick up my daughter for almost 2 month's bit it has not recurred yet. I have alot of back pain all the time which they say is normal. Does anyone else have pain like this. They have given me every medicine possible to relieve the pain but being a single mother I do not take them ever. Does anyone have suggestions on how to relieve the pain naturally?

fineas70
Posts: 5
Joined: Sep 2012

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
Posts: 5
Joined: Sep 2012

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
bexsylicious28
Posts: 2
Joined: Jan 2013

 hi steph am becky am 31 with 3 beautiful girls also have the same have 3 spinal and 1 brain got told 2 months before christmas that it's cancer ACTIVE and they have no treatment for me....I am so so scared as my kids are my world there 12 11 & 5 and there are very effected have had 3 major ops radiotherapy & gamma knife on my head so we have started fund raising not ready to leave my princess but can undersatnd the scared part xx

lsfunk01
Posts: 1
Joined: Feb 2014

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
Posts: 5
Joined: Jun 2014

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
Posts: 5
Joined: Jun 2014

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
Posts: 5
Joined: Jun 2014

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

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network