New to all of this

[hesterspearl]

My 12 year old daughter had an abnormal scoliosis x-ray, which lead us to an MRI finding SM... still waiting to go back to the ortho. I probably shouldn't be sticking my nose in radiology reports....My question is in the scheme of SM, how big is 6mm?

I figure you guys know better than anyone else. I'm so happy to have found ASAP... Thanks for just being here!

- Rachel
Mother of Hannah (SM, ADHD, Hashimoto's disease)

[Sara]

Hi and Welcome

Have you requested an information packet from ASAP? If not, then please do. You need to see a pediatric neurosurgeon to evaluate your daughter as to the cause of the syrinx. What state do you live in? Your best bet is to see a pediatric nsg at a Children's hospital.

The size isn't as important as the symptoms, and cause. Some very large syrinxes produce no symptoms whatsoever. Generally, the width is more telling than the length. But some patients with very large syrinxes that expand the entire cord have no symptoms at all. Generally, the cause of the syrinx is treated surgically and that will resolve the syrinx and hopefully also improve your daughters scoliosis.

Please let us know if we can help with any thing as you go through this process.

Sara
Holly's mom
www.caringbridge.org/visit/hopeandholly

[angie7]

Is 6mm wide or the length? Like the pp mentioned, the size really doesnt matter. A small syrinx can cause many symptoms and a large syrinx can cause no symptoms.

Where are you located? Unfornuately with SM, seeking out a specialist is the best. SM is rare and most NS dont know much about them.

The best specialist NS is Dr Frim in Chicago and Dr Menezes in Iowa. Travel is usually a must with SMers. I live in Indiana and travel to Colorado to see Dr Oro. It is a long trip, but well worth it to talk to a NS that knows this disease inside and out.

[hesterspearl]

6mm wide from T12 through L3

[brianfsmom]

Hi

As everyone has posted, the width is not as important as whether or not the syrinx causes symptoms. I do believe that when a syrinx is causing cord compression, this is something that they tend to consider more serious.

To give you an idea, my son's syrinx was putting outward pressure on the cord before surgery. Afterwards, it does not. I forget exactly, but one time (and only that onc) I did read a letter with measurements. I think it measured 4mm at one point and 5 at another. I'm not sure if it went to the 5. At that one point, it still fills a lot of the cord, but this is after decompression, so it must have been larger. I do wish I knew how wide it was before surgery. Doctors would just look at it and talk to us, they never told us the width, only the length (which was also pretty long, although it was never equal width from top to bottom).

Your daughter's syrinx is very low. Have they mentioned a cause? Does she have a tethered spinal cord?

Good luck, and welcome. Although - sorry you had to join us! We'd all rather not be here

[hesterspearl]

Thanks for the words of encouragement.

Right now I'm researching alot on my own... I live in Maryland and my daughter's orthopedist is at children's Hospital. I don't have an appointment until Nov. 26. The only information that i have about her syrinx is the radiology report from a MRI. I have not actually spoken to a doctor regarding the diagnosis. I know that the syrinx is there. In addition to the radiologist noting it in the report, I can also clearly see it on the MRI films. Of course I have more questions than answers... the cause of the syrinx is unkown (based on the MRI findings) and CM can't be ruled out because my daughter has braces so they couldn't get a clear film the cervical spine. I also realize that the syrinx is very low, I'm guessing we'll need alot more tests. I know that I am jumping the gun a little, since I haven't talked to the doctor, but can you blame me. I trying to find out as much as i can before the appointment.

Thanks for everyone's support! It's nice to talk to people who understand.

[brianfsmom]

Hi again

My son has braces, and they just produced slight "artifact" on his last cervical MRI - it clearly showed the chiari site despite the braces.The neurosurgeon? orthopedist? will probably be able to look at that part with you.

Good luck with your appointment!

[hesterspearl]

Does CM ever produce a syrinx so low?

[joeysmom]

My son has 3 syringes. One in the cervical, one in the thoracic and one in the lumbar. The one in his thoracic was the largest. So, in our experience, yes CM can cause SM low in the spine.

Good luck with your daughter.

Tonya

[hesterspearl]

Thanks....I'm sure I'll think of more questions

[brianfsmom]

Hi again

My son's syrinx also extends to the lower thoracic spine. CM can and does do whatever it wants. I would just think that if there is only a syrinx that is that low, and nothing above, tethered cord might be a more likely candidate for a cause, or idiopathic syrinx.

I think it is more common for chiari to cause a syrinx that starts in the cervical or upper thoracic area, but in no way would this mean that this is always the case.

Hope that makes sense...

[hesterspearl]

Briansmom,
Thanks for the info.... The radiologist didn't see any tethering, but from what I've been reading, tethered cord is not apparent in an MRI... I'll definitely ask the doc. about that. It just hard to narrow it all down. My daughter doesn't have any neuro symptoms... just 12 degree scoliosis, SM, and moderate headaches. It's odd to think that a month ago I knew nothing about any of this (SM, CM, etc.).

Hannah had basketball tryouts tonight. She has a beautiful outside shot and she was incredible! I'm only at the beginning of this journey and it's hard not to think about how SM will impact her for the rest of her life. The not knowing is the most difficult thing right now....

Thanks again everybody.

[brianfsmom]

Hi hesterspearl,

the not knowing is always the hardest thing!! Three years and no problems later, it still troubles me day and night. Last summer I had three months of migraines which I attribute to my own panic over the upcoming MRI. Each year I would expect to be more relaxed about it, instead I worry more. I wonder if I will ever stop worrying.

Please let us know how you do. If she is having minor symptoms only, I would think that would indicate a more likely favorable outcome.

I don't know much about tethered cord myself, and I would need to be absolutely convinced in the absence of any MRI evidence that surgery would be beneficial - without symptoms I don't think any doctor would operate in that case. They may choose to just monitor the syrinx.

Edit: I just noticed your daughter has Hashimoto's! My husband has that, too. How did she get diagnosed so young? My husband was diagnosed in his early 30's. I also worry about my children inheriting this - I know autoimmune diseases can be hereditary.

[hesterspearl]

Brianfsmom,

My daughter had behavioral issues starting at 4. I was convinced that she had ADHD (of course I was right). Her doctor thought that it could be her thyroid. We monitored her thyroid for four years with variable results. Finally when she was 8, our doctor, on a whim, checked her thyroid antibodies. We found that her antibodies were off the chart. After ruling out a tumor, she was diagnosed w/ Hashimotos which explained the unusual thyroid tests over the years, but didn't explain the behavior. At 9, when she was stable on thyroid meds, we got the correct behavioral dx. of ADHD. Her thyroid and the ADHD have been stable since the dx., but she did not grow for two years... now that she's growing we have the syrinx to contend with. Luckily she hasn't had any other autoimmune diseases pop up, but I'm always looking. As far as Hashimotos being inherited, I'm not sure... no one in my family have autoimmune diseases (although there are multiple people with thyroid disorders). Let me know if you need info. I don't know alot, but I'll share what I do know.

[willsmom]

Thought I would put in my 2 cents!

My 14 year old son was diagnosed in early Sept. with CM and a syrinx that went from C1 to T12 and was 10 mm wide. His CM was 12 mm. You would think based on that this his symptoms would have been horrible if size is a determining factor.

However, his symptoms were only numbness and tingling on his right back, right arm and around the front of his right chest down to his groin area. He also had decreased sensation to hot and cold.

He was just decompressed Monday, 11/12. Only enlargement of the foramen magnum and removal of part of C1. No opening of the dura. He went home the next day and is doing great!

I do have a question. Were you referred to an orthopedic doctor? I think neurosurgeons are probably the best equipped to deal with this.

Don't know where you are located but if you are anywhere close to Ft. Worth, Texas (Dallas), Dr. John Honeycutt did my son's surgery at Cook Children's Hospital and I cannot say enough good things about him and the hospital. He even placed his hands on my son's head before surgery and prayed.

Good luck to you.