Pain crisis

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Pain crisis

Postby hmlaz1 » Thu Nov 08, 2007 5:35 pm

Hi to all,

My fourteen year old daughter was diagnosed with idiopathic syringomyelia 18 months ago. She has had a number of health crises in that 18 months; now, however, things appear to be getting much worse. Her pain levels have become unmanageable at home and she has only intermittent use of her left foot and lower leg due to pain. This latest incident also involved her right lower extremity and arms. Her pediatrician put her in the local children's hospital (Phoenix Children's Hospital), where she was started on a course of drugs for neuropathic pain (Neurontin and Baclofen). Her neurosurgeons (2 of them) both felt that her syrinx was too small to be causing this type of pain (4mm both in the cervical and thoracic spine), so they all went searching for a cause for her pain and came up with nothing. While the meds are helping with a large portion of her pain, she still cannot walk long distances due to pain in her left lower extremity. I am hoping that another person out there in SM land may have had a similiar experience in the past and can help direct our search for the source of her pain, if indeed it is not the syrinx. I have read that many patients have alot of pain even though they have a small syrinx size and that people with large syrinx size can exhibit no symptoms. When I relay this information to the docs, they just look befuddled! My son has a diagnosis of Ehlers-Danlos Syndrome - Hypermobility type and I highly question whether my daughter also has that. Unfortunately, we have to wait until December for out appointment with the pediatric rheumotologist. HELP!!! Any info from anyone would be considered most helpful!!!!
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Postby angie7 » Thu Nov 08, 2007 10:34 pm

First, I am sorry to hear about your daughter...and you are right on with your mommy instinct. The syrinxes can most definately be causing her symptoms. It doesnt matter the size of the syrinx, just merely being there can cause many neuro problems. I do not personally have EDS, but some on here do and I do know that it *tends* to run in families. So it wouldnt hurt to have her tested for it as well..

My best advice to you, run away from the doctors she has now and find a SM specialist. This disease is rare and a true expert is your best bet. Only about 1% of SM is truly idiopathic, chances are the reason is staring them both in the face, and they dont see it or will not recognize it as a problem. Chiari is the main reason why syrinxes form and they can form any where in the spine.

So I take it your are in Arizona from your post....the closest would probably be Dr Oro in Colorado. His website is He his a wonderful man and an excellent doctor. This is the specialist I see. Unfornatuely travel is a guarantee for most of us. I live in Indiana and travel to Colorado to see him. But believe me, it is worth it to find someone that understand us and all that we deal with.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Location: Florida

Postby Janice » Fri Nov 09, 2007 11:00 am

Hi Heidi,

Have the doctors done an MRI of her brain to rule out CM? I also agree with Angie that they should do an exam or whatever they do to rule out EDS. I only have idiopathic SM, a small syrinx that NS and NL are saying should not be causing my symptoms. However, there has been no other explanation found for my symptoms over the past year. There will come a time when I will be able to afford to travel and I certainly will not hesitate to see if Dr. Oro will take my case at that time.

Along with Angie, there are many others on the board who agree that Dr. Oro is an excellent doctor with his treatment plan and treatment of patients and family. Unfortunately, I have never been to him but when you hear praises from so many you have to believe that there is truth to his knowledge and understanding of this disorder along with his kindness and consideration to patients and family. At the age of 14 she has a lifetime ahead of her, if you can travel, I would definitely think it would be worth it, especially for her quality of life.

Please keep us posted on the progress of your daughter. My prayers are with you and your family for a positive outcome.

Take care,
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4 (Copy & Paste link into your browser)
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Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Pain crisis in 14 yo

Postby hmlaz1 » Fri Nov 09, 2007 12:11 pm

Thanks for all the info. She has had numerous MRIs of the spine, and 2 of the brain. The syrinxes are the only things that stand out. I will pursue a contact with Dr. Oro to see if he will see her as she is still considered by most a pediatric patient. Currently, her activity level is almost nil. The pain meds are causing side effects of stomach upset, headache and fatigue. It is like being in purgatory - the pain is unbearable for her and needs to be treated, but the cure makes things more complicated for her. Thanks again :)
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Joined: Sat Oct 06, 2007 9:47 pm


Postby SamanthasMom » Fri Nov 16, 2007 10:18 am


My daughter is 9 yrs. old now. We knew something was wrong with her when she had delayed standing and walking. She was 17 months old and couldn't stand. (She did walk with physical therapy at 20 months after diagnosis). Her syrinx was initially 3mm in the Thorocolumbar area of the spine. She has no Chiari.

She is now 9 yrs. old and the syrinx is 6mm. They have done many brain scans, many spinal scans. She has them every year. In the beginning, more than annually. Her syrinx has not been found to have a cause. Samantha sees her Neurosurgeon and her Neurologist regularly. She started taking Neurontin 3x per day July 2006. That has helped some. When the pain got worse several months ago the NS referred us to a pain specialist and he prescribed a home TENS unit and the Nerontin was increased. She likes the TENS for when the pain gets bad. Her next scan is scheduled for June 2008 and I have told myself if her pain got so bad she coudn't stand it anymore, although I love her team of doctors here, I will travel from Atlanta to New York for the Chiari Institute. For us, we have family in New Jersey and maybe I could coordinate a visit, although we do not have insurance coverage for Chiari Institute. The money would be a huge problem.

There are other doctors listed on our website, maybe Sara could link to them or mention them and the locations. Maybe there is one close to you. In our case, my daughter's SM is still manageable, but I know that the future is uncertain and SM is unpredictable. I believe there really is a reason she has the syrinx and the doctors haven't found it.

I am so sorry that your daughter and you are having to go through this. I understand the pain because I see it in my daughter. Best of wishes.

Take care,

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