My 22wk old Baby has a Syrinx

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My 22wk old Baby has a Syrinx

Postby Debbie1974 » Thu Sep 17, 2009 7:15 am

Hello all.
I live in the UK.
My daughter Lilyah has just had an ultrasound of her back, because we were finding that she was uncomfortable sitting in her car seat (although we never have her in it for longer than 90 mins), and in the sitting position of her pushchair.
The Ultrasound showed that her spinal column was 3mm instead of the usual 1mm.
The Dr said it was called Syrinx, and has prescribed an MRI scan to find out more.
My daughter was born on 11th April 2009, she was diagnosed with a feotal SVT heart condition (Super Ventricular Tachicardia), and I was given huge doses of Flecanide and Digoxin (heart medication) to treat her in the womb until she was born. Lilyah was put on Flecanide back in June, because she had a brief approx 5min episode where her heart rate sored above 200 beats a minute, and remains on the same dose today.
Could her SVT have caused the Syrinx by the excessive piston motion, whilst her heart was in SVT??
I would appreciate your comments.

Also, as I am new to all of this, I'm not sure what to expect for my little girl. I would appreciate your frank and honest replies, I'm remaining positive, but would rather know what we are facing.

My 23wk old Daughter has been diagnosed with SM
Posts: 4
Joined: Thu Sep 17, 2009 6:57 am
Location: South Wales UK

Re: My 22wk old Baby has a Syrinx

Postby jupes » Mon Sep 21, 2009 9:07 am

Hello Debbie and Welcome!

Sorry your little one has heart problems and is now having to deal with the pain of a syrinx too! :( As for the SVT causing a syrinx, I have not seen this mentioned anywhere in the literature. Most common cause is chiari, then spinal cord injury,tumor,tethered cord ,arachnoiditis,meningitis and a small percentage are idiopathic (unknown cause). What part of the spine is the syrinx located? When chiari or a syrinx involves the brain stem, you can have fluctuations in heart rate and other vital functions. There are some people that have an associated condition called POTS Syndrome that causes these types of symptoms too. I am not a Doctor, and only a specialist would be able to determine the cause of the heart problems and the syrinx. Glad she is having a MRI which will give a more detailed picture and help determine the cause of the syrinx.

Best thing you can do is educate yourself. Check out this sites articles and online videos which discuss these conditions in children. Make sure you find a specialist that treats a lot CM/SM patients. There have been some other people from the UK on the adult forum in the past and you may want to post on that site if you need a list of recommended specialists in your country.

Good luck!

(((HUGS))) Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
Posts: 262
Joined: Fri Jan 09, 2009 2:37 am

Re: My 22wk old Baby has a Syrinx

Postby Debbie1974 » Wed Nov 04, 2009 8:02 am

We are still waiting for the MRI, it will need to be done unde4r general Anaesthetic, as she was too frightened when it was tried a few weeks ago (a silly idea i thought anyway). We have been refered to a neurologist and are waiting for a date. I rang last week to complain, and things have been moving fast since then. I spoke to the consultants secretary today, and a form has been sent to Radiology for the MRI, and we just need a date now.

I will look into POTS thank you for your info.

Its great to know we are not alone. I have also been put in touch with a UK society for the condition, and spoke to them today, they are sending me info.

Big hugs
My 23wk old Daughter has been diagnosed with SM
Posts: 4
Joined: Thu Sep 17, 2009 6:57 am
Location: South Wales UK

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