Spinal cord tumors

tlheyne
tlheyne Member Posts: 6
edited March 2014 in Rare and Other Cancers #1
Hi, I'm new here and I'm not sure if I have found the right discussion board. Let me tell you a little about myself. I am a 53 year old female, married for 35 years, 3 grown children, and up to 5 months ago working at a full-time job. On May 4, 2008 I lost feeling in both of my legs at work. My coworkers thought I was having a stroke as my blood pressure was elevated (and I am on a BP med already) so one of them carted me off to the local ER. There the dr. diagnosed me with parasthesa and told me to follow up with my PCP, which I did the next day. He thought I just had a pinched nerve and prescribed an oral steroid which did not do a bit of good. By then my legs had become severely spastic and I was developing symptoms associated with multiple sclerosis. So my PCP referred me to a neurologist who diagnosed me with transverse myelitis initially and a spinal cord lesion. I have had MRIs, CT scans, a lumbar puncture to rule out MS, a PET/CT scan to find the primary source to figure out where the lesion in my spinal cord could have come from, a fine needle biopsy of my thyroid which indicated a "follicular neoplasm pattern". I underwent a total thyroidectomy on August 13th, 2008. The path result said the thyroid was cancer free. So now I'm seeing a neurosurgeon who is telling me that he is relatively sure that the lesion in my spinal cord is a primary cancer and he is trying to find someone who will be able to get tissue samples and a biopsy. He said because I am still mobile and able to walk on my own that he will not touch me, even though he is supposed to be one of the best in my home turf. So my husband and I are waiting for his phone call. I'm getting really frustrated again by all this waiting. In the meantime, my legs are feeling heavier, the neuropathy in my left leg is getting worse, and my back is in almost constant nagging ache.

I'd like to hear from others who are dealing with spinal cord tumors. I don't even know what kind it is or what stage - I'm back to square one with this since thyroid cancer was ruled out. And yes, I know that the lesion could be benign. It's always in the back of what little mind I have left! Hope to hear from someone.

Comments

  • nene05
    nene05 Member Posts: 10
    #2
    Hello- im sorry about what
    Hello- im sorry about what you are going through. I know it can be very frustrating wating for a phone call from the doctors when your life is in the balance. I was surprised to hear that you haven't received a second oppinion? I also have a rare cancer. And they also are at a loss. I live in Upstate New York, and I received my second oppinion at Slone Kettering in New York city. You have to have piece of mind I can tell you that for sure! It will drive you crazy and you will always wonder if there was something else you could have done. This is your life and you need to be in control, ask lots of questions, and always ask what your options are. Stay strong and think positive! Good luck to you and your family. God Bless
  • tlheyne
    tlheyne Member Posts: 6
    #3
    Spinal cord tumor
    We originally thought that my thyroid was cancerous therefore it was the primary cancer. That's why I had it removed. My oncologist said that he referred me to my surgeon because he thought that the chances were really good that if we'd left it in that it would have turned cancerous eventually - the pattern was there, and my neurologist thought there was cancer there also after the fine needle biopsy. My surgeon recommended surgery and I really didn't want to take any chances of developing thyroid cancer later on. So I haven't had a second opinion - I don't really have a definite diagnosis yet. I'm hoping that we can get a tissue sample or biopsy or something more concrete to base the diagnosis on. So far I just know the cervical MRI shows the tumor. I have had a chest, abdomen, pelvic CT scan that might show something and a PET/CT scan that might show something - I don't have the discs or any test results from those tests but I'm definitely going to get everything I can get my hands on. I'll be making some phone calls tomorrow.
  • nene05
    nene05 Member Posts: 10
    #4
    tlheyne said:

    Spinal cord tumor
    We originally thought that my thyroid was cancerous therefore it was the primary cancer. That's why I had it removed. My oncologist said that he referred me to my surgeon because he thought that the chances were really good that if we'd left it in that it would have turned cancerous eventually - the pattern was there, and my neurologist thought there was cancer there also after the fine needle biopsy. My surgeon recommended surgery and I really didn't want to take any chances of developing thyroid cancer later on. So I haven't had a second opinion - I don't really have a definite diagnosis yet. I'm hoping that we can get a tissue sample or biopsy or something more concrete to base the diagnosis on. So far I just know the cervical MRI shows the tumor. I have had a chest, abdomen, pelvic CT scan that might show something and a PET/CT scan that might show something - I don't have the discs or any test results from those tests but I'm definitely going to get everything I can get my hands on. I'll be making some phone calls tomorrow.

    It just seems funny that you
    It just seems funny that you dont have a more specific answer with all the testing you've had! That must drive you nuts. I know from my own expirence that I will not leave the facility i'm in unless I have my films with me. Take it from me it saves you a lot of trouble down the road. They are yours for the taking so dont let them tell you any different. Make sure you're comfortable with your doctors. If not find someone else. And just for the record.. it wont hurt to have another doctor look over your scans.
  • tlheyne
    tlheyne Member Posts: 6
    #5
    nene05 said:

    It just seems funny that you
    It just seems funny that you dont have a more specific answer with all the testing you've had! That must drive you nuts. I know from my own expirence that I will not leave the facility i'm in unless I have my films with me. Take it from me it saves you a lot of trouble down the road. They are yours for the taking so dont let them tell you any different. Make sure you're comfortable with your doctors. If not find someone else. And just for the record.. it wont hurt to have another doctor look over your scans.

    First MRIs
    Boy, some people are just idiots. I called the hospital where I had my first 3 MRIs and told the woman that I wanted everything they had on a disc, and all I got on the disc was my head MRI. The woman I talked to said that she would tell Imaging that I needed the spine MRIs, and I didn't get any of them!! I really needed the cervical and lumbar MRIs - at one time they were on one disc together. And I made a special trip to go get them. I don't know why I didn't go back and ask about it - I actually thought I should. Sometimes I think I'm the idiot - today I was. I'm just so tired of waiting and being so miserable and not being able to think clearly. Still no call from the neurosurgeon, even after I called his office. Maybe I will have to make an appointment to discuss this with him? I'm really getting aggravated - this is my life these people are messing with!! I hate to start pestering but I will if I have to!! Thanks for letting me vent. Had my 3 year old granddaughter today and she just wears me out!!
  • tlheyne
    tlheyne Member Posts: 6
    #6
    New Neurosurgeon
    I finally got the phone call I was waiting for last week. Hubby and I made the 3 1/2 hour trip to Nashville, TN yesterday to see the new neurosurgeon, and we left with good news and quite a bit puzzled. At first after Dr. Li had seen the first cervical MRI from May with the distinct lesion in my spinal cord, he was talking about sending me to a colleague of his at Johns Hopkins in Baltimore, a neurosurgeon named George Jallo. Says he's the best in the nation for minimally invasive spine surgery. He decided that since my MRI was nearly 5 months old that he wanted a new cervical MRI and a thoracic MRI (which I hadn't had yet). So we spent a couple more hours waiting for it to be set up, then the MRI. Almost immediately afterwards Dr. Li called me and invited hubby and me up to the office to see the results. So we got to see the old and new side by side. The lesion was clearly visible in the May MRI and it was not there in the new one! Dr. Li was mystified and we were just in shock. He thinks that all my symptoms - numbness and neuropathy in the lower extremities, bladder and bowel issues, balance issues, etc. are results from an inflammatory disease. My neurologist originally diagnosed me with transverse myelitis, a neurological disorder that mimics multiple sclerosis. He also said that there is a cancer, lymphoma, that steroids can mask. So I don't know if we're still going to pursue the cancer angle or not. We have always gone on the premise that the lesion was cancerous, first secondary then primary. Now we don't know what to think, and the drs. are confounded! But my symptoms are not getting better. My only treatment right now is Prednisone for inflamation and swelling and Lyrica for the neuropathy. Otherwise we're still searching for answers. Does anyone have any opinions on why the lesion has disappeared? I'd really be interested in anyone's theories and experiences.
  • Mannie
    Mannie Member Posts: 52
    #7
    tlheyne said:

    New Neurosurgeon
    I finally got the phone call I was waiting for last week. Hubby and I made the 3 1/2 hour trip to Nashville, TN yesterday to see the new neurosurgeon, and we left with good news and quite a bit puzzled. At first after Dr. Li had seen the first cervical MRI from May with the distinct lesion in my spinal cord, he was talking about sending me to a colleague of his at Johns Hopkins in Baltimore, a neurosurgeon named George Jallo. Says he's the best in the nation for minimally invasive spine surgery. He decided that since my MRI was nearly 5 months old that he wanted a new cervical MRI and a thoracic MRI (which I hadn't had yet). So we spent a couple more hours waiting for it to be set up, then the MRI. Almost immediately afterwards Dr. Li called me and invited hubby and me up to the office to see the results. So we got to see the old and new side by side. The lesion was clearly visible in the May MRI and it was not there in the new one! Dr. Li was mystified and we were just in shock. He thinks that all my symptoms - numbness and neuropathy in the lower extremities, bladder and bowel issues, balance issues, etc. are results from an inflammatory disease. My neurologist originally diagnosed me with transverse myelitis, a neurological disorder that mimics multiple sclerosis. He also said that there is a cancer, lymphoma, that steroids can mask. So I don't know if we're still going to pursue the cancer angle or not. We have always gone on the premise that the lesion was cancerous, first secondary then primary. Now we don't know what to think, and the drs. are confounded! But my symptoms are not getting better. My only treatment right now is Prednisone for inflamation and swelling and Lyrica for the neuropathy. Otherwise we're still searching for answers. Does anyone have any opinions on why the lesion has disappeared? I'd really be interested in anyone's theories and experiences.

    New Neurosurgeon
    I have my own opinion as to why your lesion may have "disappeared" because this happened to me. An MRI (or any other test) is only as good as the person reading it, trust me. In 2001 I was having headaches and confusion so in Jan. 2002 I went in for an MRI of my head. The radiologist found some abnormal signaling in the right frontal portion of the scan that was attributed to either scarring from trauma, which I never had, or a low-grade neoplasm. I went to a neurologist who ended up sending me for another MRI in 2003,a whole year later, because my headaches would not go away. This time there was no abnormal signaling or anything else noted on the report so I went back to my PCP. My symptoms persisted and became much worse and I had more and more of them. I began throwing up in the AM with SEVERE headaches that were disabling, my personality changed, my vision changed, I was exhausted, and several other things. I was misdiagnosed with migraines, cluster headaches, sinus infections, bipolar disorder, obsessive-compulsive, making it up, and being crazy. In March of 2007, a little more than 5 years after the 1st MRI of my head the "abnormal signaling" was back as an extremely aggressive and rare kind of brain cancer, a gemistocytic astrocytoma. I was originally diagnosed with a GBM, grade 4, but the pathology report showed a slightly different histology.
    Nobody is really sure what happened with the 2nd MRI reading. I was actually tested for MS and other neurological disorders after the 2nd MRI was clean. I had a lumbar puncture and a ton of blood work, all of which were normal. I don't see ANY of those doctors anymore, I fired them. Now I have a fantastic medical crew. If you want the name of a good doctor, ask your nurse. I asked one of my oncologists nurses for names of several kinds of docs and it worked out really well. If anyone knows a good or lousy doc, it's a nurse. I see all of my doctors at UPMC (University of Pittsburgh Medical Center) cancer centers and hospitals. My neurosurgeon's name is Dr. Arlan Mintz. He could probably give you another opinion if you're interested because he's used to dealing with weird issues. He's developed several operations with the help of the other people in his team and goes to a ton of conferences to teach and learn.
  • bruceean
    bruceean Member Posts: 1
    #8
    Mannie said:

    New Neurosurgeon
    I have my own opinion as to why your lesion may have "disappeared" because this happened to me. An MRI (or any other test) is only as good as the person reading it, trust me. In 2001 I was having headaches and confusion so in Jan. 2002 I went in for an MRI of my head. The radiologist found some abnormal signaling in the right frontal portion of the scan that was attributed to either scarring from trauma, which I never had, or a low-grade neoplasm. I went to a neurologist who ended up sending me for another MRI in 2003,a whole year later, because my headaches would not go away. This time there was no abnormal signaling or anything else noted on the report so I went back to my PCP. My symptoms persisted and became much worse and I had more and more of them. I began throwing up in the AM with SEVERE headaches that were disabling, my personality changed, my vision changed, I was exhausted, and several other things. I was misdiagnosed with migraines, cluster headaches, sinus infections, bipolar disorder, obsessive-compulsive, making it up, and being crazy. In March of 2007, a little more than 5 years after the 1st MRI of my head the "abnormal signaling" was back as an extremely aggressive and rare kind of brain cancer, a gemistocytic astrocytoma. I was originally diagnosed with a GBM, grade 4, but the pathology report showed a slightly different histology.
    Nobody is really sure what happened with the 2nd MRI reading. I was actually tested for MS and other neurological disorders after the 2nd MRI was clean. I had a lumbar puncture and a ton of blood work, all of which were normal. I don't see ANY of those doctors anymore, I fired them. Now I have a fantastic medical crew. If you want the name of a good doctor, ask your nurse. I asked one of my oncologists nurses for names of several kinds of docs and it worked out really well. If anyone knows a good or lousy doc, it's a nurse. I see all of my doctors at UPMC (University of Pittsburgh Medical Center) cancer centers and hospitals. My neurosurgeon's name is Dr. Arlan Mintz. He could probably give you another opinion if you're interested because he's used to dealing with weird issues. He's developed several operations with the help of the other people in his team and goes to a ton of conferences to teach and learn.

    scared
    I have just found out that i have a tumor on the lubar part of my spine. I had been going to see drs. in my area and they missed this tumor a year ago wrote it off that i had a crack in my spine and that i was fine amonth ago the pain was unbareable i went back had a x-ray done and now that so called carck turned into a tumor the size of a half dollar and shaped like a star. and its pressing on my spinal cord and i have been seeing things and mood changes and siever pain in my back to where i can barley move. than the doctor told me have have only 6-12 months be fore i will need a wheel chair and 6-12 months after that before i am dead. I have 7 children and they range from the ages of 13 down to one. I dont know where to go or what to do. i have had my life ripped away and my kids are going to be fatherless according to this one dr. and its just not fair i need some advice and help to point me in the right direction if anyone has any info please tell me.thankyou. bruce
  • beacon
    beacon Member Posts: 77
    #9
    bruceean said:

    scared
    I have just found out that i have a tumor on the lubar part of my spine. I had been going to see drs. in my area and they missed this tumor a year ago wrote it off that i had a crack in my spine and that i was fine amonth ago the pain was unbareable i went back had a x-ray done and now that so called carck turned into a tumor the size of a half dollar and shaped like a star. and its pressing on my spinal cord and i have been seeing things and mood changes and siever pain in my back to where i can barley move. than the doctor told me have have only 6-12 months be fore i will need a wheel chair and 6-12 months after that before i am dead. I have 7 children and they range from the ages of 13 down to one. I dont know where to go or what to do. i have had my life ripped away and my kids are going to be fatherless according to this one dr. and its just not fair i need some advice and help to point me in the right direction if anyone has any info please tell me.thankyou. bruce

    bump for bruce....

    bump for bruce....
  • BRH
    BRH Member Posts: 2
    #10
    (scared) don't know what to expect

    Hi. I know this is an old thread. I just need to know what I'm facing. The surgery I had was 3 months ago and I'm not getting better. I don't know why my doctors seem to have different opinions and are so vague about what I can expect. If I am going to die from this then I want to know. Or if I will get better I need to know what to expect. How long. I just finally got my neurologist to meet me and he now says it may take 6 months before I see results! Then I should feel better after 3? You would think? I am in my early 30s. I am exactly the age my mom when she was diagnosed with a astrocytoma 4 in her spinal chord. They found 2 mass forms in my thoracic.  One was calsified and the other was diagnosed as an arachnoid cyst intramedular. I am told these are very rare. I remember my mom's was as well. She died at 35yrs old. I have had back problems the last 8-9 years that turned into chronic back pain.  I thought it was do to being in construction my entire life since I was a kid working for my dad. I was skeptical about having surgery because they could not diagnose this cyst to see if it was like my mom's cancerous form. I had a feeling I should not of had them touch it because I hurt now more than ever and I am worried I may not ever be able to go back to work. Or if I will ever be the same. If anyone reads this and has experience whether it be a doctor or a patient, please bring me up to speed on what I should expect since I can't seemed to get straight answers from my doctor. My meylopathy has not subsided.  I can walk but it is painful for long periods and simple things like showering, putting on my clothes, getting in and out of car, making my bed, takes longer for me and at times excruciating for me. Its been 3 months post surgery but recovery is not happenen!! I hope I hear from someone!  Thank you for reading this!

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