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Thread: Newbie! ?? about 4 yr old w/ Syringomyelia

  1. #1
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    Question Newbie! ?? about 4 yr old w/ Syringomyelia

    Hi Everyone! I have been searching for a place where I can discuss what has been going on this last week and I am so glad to have found this sight.

    I am a 28 yr old mother of two currently living in Alaska. This last week has been very frightening for me and my husband. I'll give a short history... We took our four year old daughter to the doctor as she was having neck pain. If she ran or jumped up and down she would just start screaming and crying in pain saying that she bent her neck and that her neck bit her?? The DR. requested an MRI - We had that done on 4/18/08. He called me on 4/30/08 to tell me that they found two Syrinx- One in her upper thorax and one in her neck. He told me he spoke with a neurologist and that they did not believe thats whats causing the neck pain and wanted Xrays of the neck (Flexion/Expansion Images) to try and determine what was causing the neck pain. In the meantime he has referred us to a neurologist for her Syringomyelia.

    I have done research on Syringomyelia in the last few days and am really worried. At this point we do not know the cause of the Syrinx - The MRI was taken from about her Chin to the top of her Chest Bone so we don't know if there is anythingelse going on, we are waiting to see the neurologist. The doc asked about recent injuries/accidents and goodness this is a very active four old that is also very clumsy. At 11 months she fell and ended up with stitches. At 18 months we were in a MVA and in October 07 she jumped from the top of a stairwell (her 4 year old cousin was going to catch her) and broke her foot. The usual childhood stuff...okay maybe a bit more than the usual but nothing that just jumps out at me.

    My questions are: Does anyone have any experience with preschoolers/children that have Syrinx? What was your experience? Is it possible this could be the cause of her neck pain ( I mean the cyst are in her neck). Is it common to have more than one syrinx at a time?? Any insight would be appreciated,

    Thanks!
    Sandie

  2. #2
    I know that primary syringomyelia can be associated with both spina bifida oculta and with Arnold-Chiari malformations. Has anyone mentioned either of these possible conditions?

    I have asked Dr. Young to comment here when he gets time.

    (KLD)

  3. #3
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    Neither of those have been mentioned at this point, I believe that her pediatrician is not really familiar with syringo and wants us to see the neurologist. All the pediatrician has said is that the neurologist will do a full work up and another MRI and at a minimal she will need follow up MRI's to ensure the cyst do no grow any larger. I have read about both conditions via the internet. My thought was that the spina bifida would have been caught at birth??? I know that Chiara Malformation could be a cause but she hasn't been diagnosed with that nor tested for it, unless it is something that would have shown up in her MRI.

    Thanks for asking Dr. Young to respond, I look forward to his comments.

    Sandie

  4. #4
    Hi, I remember responding to this but cannot find my response. So, here is an answer again based on what I can remember.

    First, the most common cause of syringomyelic cysts in the cervical region in children is the Arnold Chiari Syndrome which occludes cerebrospinal fluid flow around in the subarachnoid space around the spinal cord. Other causes include meningitis that may have caused adhesions and blockage of cerebrospinal fluid flow in other parts of spinal cord. Regardless of cause, the question is whether or not the syringomyelic cysts are progressing and whether they are causing any symptoms. If the answer to both of these questions is no, most doctors elect a wait-and-see approach. If the syrinxes are causing symptoms and they are progressing, then surgery may be necessary.

    Second, regarding various incidents of potential trauma and her neck pain, I agree that the syrinx is unlikely to have resulted from the incidents and probably is not the cause of her neck pain. That needs to separately evaluated and may require different solution (such as a collar, if the pain is ligamentous in origin).

    Third, she should get a careful neurological examination by a pediatric neurologist to make sure that nothing is missed.

    Wise.

    Quote Originally Posted by littleuga
    Hi Everyone! I have been searching for a place where I can discuss what has been going on this last week and I am so glad to have found this sight.

    I am a 28 yr old mother of two currently living in Alaska. This last week has been very frightening for me and my husband. I'll give a short history... We took our four year old daughter to the doctor as she was having neck pain. If she ran or jumped up and down she would just start screaming and crying in pain saying that she bent her neck and that her neck bit her?? The DR. requested an MRI - We had that done on 4/18/08. He called me on 4/30/08 to tell me that they found two Syrinx- One in her upper thorax and one in her neck. He told me he spoke with a neurologist and that they did not believe thats whats causing the neck pain and wanted Xrays of the neck (Flexion/Expansion Images) to try and determine what was causing the neck pain. In the meantime he has referred us to a neurologist for her Syringomyelia.

    I have done research on Syringomyelia in the last few days and am really worried. At this point we do not know the cause of the Syrinx - The MRI was taken from about her Chin to the top of her Chest Bone so we don't know if there is anythingelse going on, we are waiting to see the neurologist. The doc asked about recent injuries/accidents and goodness this is a very active four old that is also very clumsy. At 11 months she fell and ended up with stitches. At 18 months we were in a MVA and in October 07 she jumped from the top of a stairwell (her 4 year old cousin was going to catch her) and broke her foot. The usual childhood stuff...okay maybe a bit more than the usual but nothing that just jumps out at me.

    My questions are: Does anyone have any experience with preschoolers/children that have Syrinx? What was your experience? Is it possible this could be the cause of her neck pain ( I mean the cyst are in her neck). Is it common to have more than one syrinx at a time?? Any insight would be appreciated,

    Thanks!
    Sandie

  5. #5
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    Dr Young,

    Thank you for your response. My daughter has not had meningitis but I did at 18 months and almost died from it. Ofcourse that was 26 years ago and medicine has advanced tremendously since then. At this point she hasn't been dx'd with CM either. We have an appointment with the Neurologist on the 20th and I believe she will run all the necessary test. We are seeing a Dr. Janice Onorato at Fairbanks Neurology Clinic. I don't believe she is a pediatric neuro but in Alaska that would be hard to find. Can you suggest a website where I can search for Ped Neuro's close to here? I think we may have to fly to WA for a Pediatric Neuro or maybe further.


    We have not received the results of Kaitlyns additional Xrays and are waiting to hear from the doctor on those.

    Now that we've had some time to get over the initial shock of all this, and had a few days to research my husband and I are much calmer. Kaitlyn does not present with any of the syrinx symptoms right now so from what I understand we will play the wait and see game.

    Thank you again for your response and SCI Nurse thank you as well!

  6. #6
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    We went to see the neurologist and she has referred us to a Pediatric Neurosurgeon. We fly to Seattle Childrens hospital the first week of July. They requested that I get all medical records and so I am seeing the MRI results for the first time today. I am listing the findings below and hope that someone can clarify to me what it says. I understand the Syrinx portion but there are two other findings listed that the doctors have never mentioned to me and I don't know what if any significance it may have on her Syrinx DX. Also, I really am shocked that no one has ever mentioned them to me.

    MRI Findings:

    The marrow space appears normal. Increased signal on T2 weighted fluid sensitive images is seen in the dorsal interspinous soft tissues at c3-c6. There is corresponding enhancement on axial images in this location without evidence of discrete mass. In the setting of trauma this could relate to ligamentous injury.

    There is focal syringohydromyelia in the lower cervical cord at C6-C7. A second focus of syringohydromyelia is present at T11-T12. There is no pathologic intramedullary enhancement in these regions. Spinal cord signal is otherwise normal. The conus terminates at the L1-L2 level.

    There is narrowing of the central canal. Interverebral disc spaces are intact. Visualized intracranial contents including the posterior fossa appear normal. There is no cerebellar tonsillar ectopia.

    There are several mildly prominant lymph nodes in the upper neck bilaterally which are most pronounced at the level of c2-c3 on the left side. The largest node measures about 8 mm in short axiz and is along the deep margin of the left sternocleidomastoid muscle. The nodes do not appear suppurative.

    Impression:
    1. Two focal areas of mild syringohydromyelia in the lower cervial and thoracis cord without evidence of underlying spinal cord mass or other pathologic intermedullary process.

    2. Posterior interspinous edema is seen along the dorsal soft tissues at c3-c6. In the setting of recent trauma this finding suggests ligamentous injury, in which case flexion and extension views might be obtained.
    3. Mildy prominent lymph nodes in the upper neck, particularly on the left side at c2-c3. These are nonspecific, do not appear suppurative and may be reactive in nature.

    My questions pertain to impressions 2 & 3.... what does this mean? My daughter is still having neck pain and has recently stated her feet and hands are tired.. I know the docs at Seattle Childrens can answer my questions but her appt. isn't for another two weeks... I can't wait that long and her Pediatrician has now been deployed and she has been assigned a new one who can't answer my questions because she has never treated her and she hasn't looked at her records/clinincal notes. URGH!?!?!?!

    Any insight from anyone would be greatly appreciated. Thanks!

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    Deployed? You are a military family?
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #8
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    Yes my spouse is Active Army... We are on Tricare insurance. Our daughters pediatrician is at the hospital on post or was but is now deployed and her case has been transferred to a new pediatrician. Up until we were stationed in Alaska I carried insurance through my employer and so this is my first experience with military doctors.

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    Check your private messages.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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