14 year old athlete with syrinx - can she continue

[zjb0808]

My daughter has been in competitive cheer for 7 years.  Last week she was diagnosed with what appears to be a syrinx (was an incidental finding after going in for an MRI due to low back pain....that since has started to resolve).  My daughter is scheduled to fly to Florida next week for an elite cheer competition.  I am concerned about allowing her to base and tumble until we receive results from a second MRI and an actual diagnosis.  Does anyone have a gymnast or cheerleader that has continued to compete after being diagnosed with a syrinx.  This is devastating as she just made Varsity HS cheer as an incoming freshman and is very athletic (also plays tennis).  Any information would be greatly appreciated.  Thank you so much!

[The_beat_goes_on]

I'm glad you're going for second and third opinions ... and that she is out of pain.  I hope it stays that way!  

Has the cause of the syrinx been found?  Does she have Chiari?  Stress the importance of her telling you about any changes ... numbness, pain, anything, anywhere.

I bet it is tough to find the balance of being careful and still living life, but if the other surgeons opinions are the same, it should get a lot easier!  Here's hoping. :)

[selmaS]

  I know what u mean....but do look at the NS and look for one that is a Chiari specialist as her issues could be Chiari related....

As to being born this was, that is a given with Chiari, but does not mean it is nothing going on....

She may do well and the other shoe may never drop....but for peace of mind do rule out related conditions like EDS, ICP, POTS...etc....

I pray she continues to feel and do well <3

[zjb0808]

I was able to get her in to a pediatric neurosurgeon where she was examined by both the Dr & her PA.  After a full physical exam they decided that she has no symptoms (felt her back pain was due to muscle inflammation resulting from over use) and may have just been born this way.  The Dr wrote a letter releasing her to participate in all physical activity.  The back pain has resolved (ice / heat are no longer needed).  My husband and I have scheduled second opinion appointments with two different pediatric neurosurgeons (in 2 different states) in an effort to make sure nothing was missed.  We would rather be safe than sorry.  As of now our daughter feels good and I don't want to treat her like a fragile egg as long as she is symptom free & pain free.  I hate this so much & I hate feeling like we are waiting for something bad to happen.  That is no way to live life.  So frustrating.

[The_beat_goes_on]

I'm sorry your daughter is going through this.  Dr Stephen Fletcher is a pediatric chiari specialist with Memorial Hermann in Houston, TX.

6410 Fannin St Ste 950,
Houston, TX 77030

Phone: [phone]
Fax: [phone]

Might be worth a try ... I would play the bad guy and suspend all activity that could exasperate her condition until you get someone to tell you definitively that it will not cause permanent damage.  The spinal cord is just not something worth risking damage to.

You really don't need a neurologist.  They are usually dead-ends and just want to throw drugs at you, which do little if anything for any of us.

[selmaS]

  Hi...sorry I was MIA this weekend...and I did not get to see this...not sure if u left for ur appointment.

Wait till u see the NS as they are the ones u should ask about a NL.....

As for a good pediatric Dr.....hmmm there are a few...one in Chicago who now also treats adults...Dr Frim...and in Orlando....I can never remember that Drs name...but I heard good things, and a Dr Henderson in MD, and all the Drs at TCI in NY treat children....those are the ones I am aware of.

U can get more info on the above Drs as to address or phone numbers (if they were available) in the list of Drs  in our health pages.....

http://www.medhelp.org/health_pages/list?cid=186

[zjb0808]

Hi!
Since my original post she has had two more MRIs.  She had a full cervical to lumbar both with & without contrast.  This radiologist labeled the findings a hydromyelia in two locations.  The first at T5-T6 to T8 with a maximum dilation of 6mm & the second at T11 w a dilation of 8mm.  She also had a brain MRI without contrast and it came back normal.  The only symptom she has is low back pain that seems to b mild in nature & comes & goes.  We manage it with a heat wrap on ibuprofen 0-2 times per day based on need.  I am now in complete panic mode.  We are scheduled to see a pediatric neurosurgeon Monday morning and I have also set up a second opinion appointment w a neurosurgeon in Tx for 5/27.  Do you know who the "go to" pediatric neurosurgeon is (we are willing to travel)?  Do I need to get a neurologist on board as well?  Any thoughts or suggestions are greatly appreciated.  I feel like I'm going crazy.  Thank you
So much!

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask what area of the spine was done (MRI) and where the syrinx is located....and did she have a trauma to this area of her back?

It is possible she will be fine to continue, but I know those stunts they do when cheering and it can be an issue....u will want to know what caused her syrinx to form....if she also has Chiari, I would advise her to not participate...