Syringohydromyelia

[foxxxy]

My daughter was recently told she needs surgery for her scoliosis.

We had the MRI done and was told she needs to see a nuerologist because of Syringohydromyelia.

Has anyone had this issue? How is it fixed?

[LLB]

Syringohydromyelia

Hello Foxxxy,

My son was diagnosed with the same thing, otherwise known as a syrinx. "Syrinx is a fluid collection in the spinal cord. There are many causes of this such as hydrocephalus, Chiari Malformation, trauma, tethered spinal cord, tumor and a very large number without any clear cause, the so-called idiopathic. These collections are usually similar to spinal fluid."
My son also had to see a neurologist prior to surgery. Although they labeled his as "idopathic" cause unknown, they did say his spinal cord was slightly tethered at the curve in his back. My son had surgery in 2005 for a 53 degree right thoracic curve. They only straightened him to 30 degrees in fear of possibly causing damage to the syrinx and tethered cord. He is fused from T2-T11, titanium rods, hooks and screws. He has had no problems from the surgery. Hope this helps!

[LLB]

Syringohydromyelia

Hello Foxxxy,

You asked how is it fixed and I forgot to include that in my previous post. I was told by the neurologist that it could be fixed by draining the fluid filled sacs. That would involve inserting a needle into the spinal column and into the sacs to remove the fluid. My sons syrinx is very very small and I chose not to have the procedure done. I was told that most of time they do not cause problems and the risk is not worth having the procedure done.

[foxxxy]

So it did not affect the surgery to correct Scoliosis?

LLB,

Thank you for sharing your story, I appreciate it!

I just want to clarify that syrinx did not affect your son's surgery, correct?

[LLB]

So it did not affect the surgery to correct Scoliosis?

I hope I am understanding your question. He was still able to have the surgery to correct the scoliosis (they didn't say he couldn't have surgery). In my sons case like I mentioned before, they did not straighten him as much as they would have liked because of possibly causing damage to the syrinx and tethered cord. The actual surgery went fine. No problems during surgery and he has had no problems since the surgery. There were no changes in the syrinx or tethered cord due to the surgery.
I assume since your daughter needs surgery her curve(s) are above 50 degrees? Have you scheduled a date? My son had his during summer break so he would be ready to attend school when it started again.

[foxxxy]

LLB,

The surgery was scheduled for last Friday but the MRI showed this problem so we have to go to the neurologist to get clearence. The surgery is tentively scheduled for August 26th.

Her lumbar curve is 48 degrees and her thoracic curve is 28 degrees.

Thanks for your input!

[LLB]

Hello Foxxxy,

Good luck with your daughters surgery and recovery!!!

[pmsmom]

Hi, Foxxxy--glad you found the forum!

The people here have a wealth of information! Any time you have questions, if you post here, there's usually someone who can answer.

Many parents have children who have had the surgery, so they can also help with questions regarding that.

Take care!

[Mom37]

See the website www.asap.org for SM/CM, if you haven't already, as it is a valuable tool. My daughter had scoliosis also and we understood it was due CM/SM, so large long fluid pockets, SM (syrinx), caused by Chiari I, CM. Since she had Chiari her surgery may be different. Her brain "tonsils" were too low (Chiari I), so blocking the flow of her spinal fluid like a cork in a bottle, which we didn't know at scoliosis diagnosis 6 months earlier. We had 3 opinions by pediatric orthopedic surgeons on the scoliosis. We had 2 opinions with pediatric neurosurgeons, and with both saying need surgery but surgery slightly different. We went with the top recommended from Children's Hospital in Dallas. They removed the excess tissue and it allowed flow and it naturally drained the pockets so no tubes were required. She had "brain surgery", called decompression surgery, in which they cut the dura "spinal cord cover, removed small excess unneeded brain tissue, and small portion of skull bone where connects to the spine. Although the fluid pockets did drain substantially, her curve still progressed so since high in degree still had spinal fusion surgery 9 months later. We waited as long as we could on both, but both doctors considered necessary within 3 months of seeing them. Both went well and Texas Scottish Rite Hospital for Children was the best hospital and doctors for their recommendations as well as their care.