myxopapillary Ependymoma

2

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  • Oboe Mom
    Oboe Mom Member Posts: 2

    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

    Youngest ever diagnosed
    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
  • mystonia
    mystonia Member Posts: 1
    You're not alone!
    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
  • MySweetSon
    MySweetSon Member Posts: 2
    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

    Our 13 year old sons---For Diane
    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
  • MySweetSon
    MySweetSon Member Posts: 2

    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

    Your Sweet Baby Boy
    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
    [email protected]
  • IMNOTMAGGIE
    IMNOTMAGGIE Member Posts: 1
    Four years tumor free!
    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.
  • mainemom
    mainemom Member Posts: 1

    Our 13 year old sons---For Diane
    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

    My son's experience with myxopapillary ependymoma
    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.
  • ghull29
    ghull29 Member Posts: 2

    Myxopapillary
    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

    [email protected]

    metastic myxopapillary ependymoma
    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 @ [email protected]

    Gail
  • sjmeyer
    sjmeyer Member Posts: 1
    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
  • sunshine8062
    sunshine8062 Member Posts: 1
    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

    Myxopapillary Ependymoma
    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.
  • JoJoJodyJo
    JoJoJodyJo Member Posts: 1
    Surviving ME
    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.
  • rosaelena
    rosaelena Member Posts: 1

    Myxopapillary Ependymoma
    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.

    Sacral Myxopapillary Ependymoma
    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
    DJ1985 Member Posts: 3

    Surviving ME
    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.

    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
  • DJ1985
    DJ1985 Member Posts: 3
    rosaelena said:

    Sacral Myxopapillary Ependymoma
    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

    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
  • DJ1985
    DJ1985 Member Posts: 3
    rosaelena said:

    Sacral Myxopapillary Ependymoma
    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

    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
  • Lauriefitz
    Lauriefitz Member Posts: 3

    Surviving ME
    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.

    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
  • Lauriefitz
    Lauriefitz Member Posts: 3

    Surviving ME
    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.

    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
  • kel-liy
    kel-liy Member Posts: 1

    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 Ependynoma
    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?
  • MPE2009
    MPE2009 Member Posts: 1
    rosaelena said:

    Sacral Myxopapillary Ependymoma
    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

    Very Similar Experience

    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. [email protected]

    BTW: I am 43 today.

  • bexsylicious28
    bexsylicious28 Member Posts: 2
     hi steph am becky am 31 with

     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

  • 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