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  • New to Forum - Mass found, Appreciate Advice (long post)

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    Old 10-07-2006, 10:01 AM   #1
    Join Date: Oct 2006
    Location: Kansas City, KS, USA
    Posts: 7
    luvmyjob HB User
    Question New to Forum - Mass found, Appreciate Advice (long post)

    Hi to Everyone,

    Thanks to all very much for offering advice and empathy to others. This is such a selfless act that others in life should follow.

    I recently had an MRI of the Lumbar due to radiating pain and numbness that started in my lower back, down my butt and around to the anterior of my thigh and stopped at the knee. It eventually become bilateral to the thighs but also have some numbness and tingling of left arm and fingers. The Mri read as such:

    "Fatty mass located at the right lateral asect of the conus that slightly displaced the conus to the left and distorts portions of the cauda equina. The signal intensity of the lesion suggests that it is composed mainly of fat, however, there is some heterogeneity of the lesion without appreciable enhancement. Diagnostic considerations would include a dermoid or a lipoma. An epidermoid would be considered less likely." Lumbar discogenic disease, predominantly confined to the L4-L4 and L5-S1 levels. There is mild central canal stenosis and bilateral foraminal stenosis at these levels."

    I know in talking to the radiologist that "it appears" the mass is like a lipoma. I am very aware of Cauda Equina Syndrome. What I don't know can symptoms of Cauda Equina come on slowly? My current symptoms are as follows, intermittent low back pain particularly with long periods of standing/walking, off and on pain/numbness uni or bilateral from lower back thru butt and around to anterior thighs stops at knees. I always feel a heaviness in my butt area like my bones are going thru the bottom of my butt or (this is gross) my anus is weighted down. At times it feels like a entire heaviness in the pelvic floor. I at times have inguinal pain as well. The pain does diminish when lying down, never goes completly away. I have no problems with urinary or bowel incontinence. Also, the numbness and tingling of left arm and hand remain.

    I do have an appt. with neurologist on the 16th. Family practice doc has recommended Epidural injectios for pain but I will refrain from that just yet only because I do want to know what I am feeling until I see neurologist.

    I guess I am just asking for input from anyone who would like to respond. It just seems there is very little info. regarding a mass/tumor of the spinal cord at this area (cauda equina).

    Thank you for caring.

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    Old 10-07-2006, 01:04 PM   #2
    Senior Member
    Join Date: Jun 2006
    Location: Dallas, TX USA
    Posts: 106
    puparoo HB User
    Re: New to Forum - Mass found, Appreciate Advice (long post)

    Hi luvmyjob -

    Most of us here have cervical issues going on. Although it seems that plenty of us (myself included) have had some lumbar problem in the past. I am not familiar with cauda equina syndrome symptoms or treatment. I do know that it is pretty serious though and the ESI's might help you to get the swelling down before the nerves get damaged badly. I also did not know that could affect your hand and arm.

    You may want to jump to the "Back" forums on the Healthboards. I use that board when dealing with my lumbar issues and I do remember seeing a few postings on cauda equina syndrome and other issues like yours. I have a bulge at L5 and arthritis in my lumbar spine.

    Good luck.
    Hernations with Stenosis
    C 3/4, 5/6, 7
    Some Cord Compression

    Old 10-17-2006, 03:26 PM   #3
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    Join Date: Feb 2005
    Posts: 1,115
    slipperyslope HB User
    Re: New to Forum - Mass found, Appreciate Advice (long post)

    You would know if you had Cauda Equina Syndrome. I had it and it was horrible. my symptoms were COMPLETE numbness in the saddle region, so my crotch area, buttoks, lower legs and one foot was completely numb. I could not feel myself urinataing and could not go number 2. I presented myself at the ER room and they did an MRI and I was wisked away to the OR room for a Laminectomy. the Neurosurgeon really didn't think I would have bladder or bowel control ever again, and he thought I very well could be paralized after surgery as he wasn't sure if he could remove the disk off the cauda equina. I am so darn lucky that I am okay, although I don't have feeling in my back legs or all the way to my calfs my foot it is 100% numb and will never come back, everything else works but I do have numbness in parts of the saddle region and buttocks, I can't feel a thing there but can live with that my butt feels heavy all the time and if I sit on the concrete it really feels weird and it feels like I have a big ol butt.

    I was pulling out a rose bush and ruptured my disk, L5-S1 which is the Lumbar area.. Your symptoms sound a little bit like Cauda equina but a very mild amount. When the NS saw my MRI he was horrifed and said I am in serious trouble if I don't have the decompression surgery right now. so I had no time to prepare for my surgery, which I think in a way was a good thing.
    a NS can tell if you have Cauda Equina syndrome so check it out with him, but you would know, believe me.

    Old 10-18-2007, 10:02 AM   #4
    Posts: n/a
    Re: New to Forum - Mass found, Appreciate Advice (long post)

    Originally Posted by slipperyslope View Post
    You would know if you had Cauda Equina Syndrome. I had it and it was horrible. my symptoms were COMPLETE numbness in the saddle region,
    That's not necessarily true. CES Symptoms vary in intensity and may evolve slowly over time, depending on the cause. I had CES for three years before I was diagnosed with a spinal cord tumor at L4-S1.

    LuvMyJob, spinal cord tumors are very rare. Despite that, you are not alone.

    Let me know if I can help in any way.


    Last edited by moderator2; 10-18-2007 at 01:06 PM. Reason: disallowed website

    Old 10-19-2007, 01:11 AM   #5
    Posts: n/a
    Re: JodyTakesPics

    Originally Posted by moderator2 View Post
    Please bring your attention to the posting policy.

    Please do not post websites except as described in the posting policy section titled "How to share information".
    The data listed on ***** (this parent site) about the occurrence rate of primary spinal cord tumors is inaccurate. ***** states that there are approximately 40,000 American develop a brain tumor and 10,000 Americans develop primary or metastatic spinal cord tumors (SCT) each year. This statement is simply not true.

    The approximated 40,000 incidence of brain tumors includes SCTs, but does not differentiate primary tumors from metastatic tumors. The actual incidence rate of primary SCT's is 0.57 per 100,000 or 2,503 people over a five year period. Simplifying this to a year average means that approximately 400 people will develop a primary SCT each year, not 10,000 as reported. The chance of developing an SCT is less than 1 in a million, which means you have a better chance of winning the lottery than getting an SCT.

    Another misleading theory that doctors believe (if they know anything about SCT at all) is that benign SCTs such as the myxopapillary ependymoma (ME) do not recur. This too is not totally correct. Cancer guidelines consider one "Cured" from cancer if they have a five year period with no new tumors or recurrence of previous tumors, so many patients weren't followed after five years. However the fact is that the odds of a recurrent ME is between 10% and 33% even if the tumor was 100% removed. There are documented cases of tumor recurrence as long as 20 years after the original tumor was removed, and a large percentage of recurring tumors occured many years after initial surgery. Fortunately, the medical community is becoming aware of this and SCT survivors are starting to be followed for longer periods.

    I was one of the lucky ones. Although it took me three years to be diagnosed and I made a full recovery with no physical deficit despite a large tumor in my spinal cord, I had to see three doctors before I found one with enough experience to care for me. Even though it's been 17 years since my surgery, my neurosurgeon will order an MRI of my entire spine at the drop of a hat when most doctors would refuse. I am also fortunate that my primary care physician understands the lack of mainstream information that is available on SCT. She listens to what I have to say and is interested in reading any new research or data that I find. Interestingly, two doctors (my PCP and an orthopedic surgeon) this week told me that SCT survivors routinely know more about their condition than most doctors do.

    Misleading and incorrect information such as published by the National Institute of Health and posted on ***** is frustrating and potentially life threatening to people who develop spinal cord tumors. It is critical that anyone with an SCT know the facts. These cases are so rare that most SCT survivors have been misdiagnosed for years leading to paralysis and death. I know of some who were told that their tumor is inoperable which lead to permanent damage, only to find a doctor years later who could have saved their legs. Many of those who were fortunate enough to be correctly diagnosed in the beginning had to see several doctors before they found one who had any kind of experience or knowledge of SCT. I spoke with a research coordinator at the National Cancer Institute this afternoon who told me that CNS tumors were brain tumors and not spinal cord tumors. Whaaat? Since when was the spinal cord not part of the Central Nervous System? I believe I learned different in high school biology! Hearing these words out of someone who most definitely should know better scared me to death because if the NCI can't get it right, then who can we trust?

    I guess my point in this is the hope that anyone who has or suspects a spinal cord tumor do serious research on the condition. Do not rely on commercial or consumer sites such as this one and others. The information is either not specific enough or is just plain wrong. There are sites out there and doctors who know how to handle this condition but unfortunately due to posting rules, I am not allowed to mention the one site on the web with correct and accurate information. Find out exactly what kind of tumor you have and research it. I pray you find the site I can't mention because it is non-commercial and truly saves lives.


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