Diastematomyelia in my 4 yr old q's - Spinal Cord Disorders Message Board

tiffanyharrison · 01-19-2004, 10:12 PM

my 4 yr old daughter has had a bunch of tests done and the latest shows Diastematomyelia she also has tethered spinal cord,now i am looking for anyone that can explain what is going to happen. i have to wait for us to see the ped neurosurgeon then he will show me the films etc. My dtr has had urodynamics done which has to be redone,renal-bladder u/s,mri of head and entire spine under general,xrays,and the latest that gave us this dx was myelogram with ct scan under general.which emily got a spinal headache that put her into the er on friday needing a blood patch that they couldnt do because she had no vein sites left. she finally got the headache out of her system yesterday,i felt so bad for her!

so if anyone can tell me about this and what kind of operation and recoup time she is looking at would be appreciated,i am floored to say the least with all of this.
thank you
Tiffany

DonnaKay · 01-20-2004, 01:56 PM

Tiffany -

I have no knowledge of the things you are talking about. I just want you to know that my heart goes out to you. I have a 5 y/o daughter and if I put myself into your position, I feel like I can at least begin to understand how gut wrenching this must be for you. Someone on this board just recently (within the last 2 months) mentioned a tethered spinal cord - she had undergone surgery to repair that and was doing well. I hope she is able to get on here and see your post.

Good luck!
Donna

srivito · 01-20-2004, 05:25 PM

HI Tiffany,

I wish you and your family the best--I'm "bumping" your question to keep in near the top and in view.

Sue

tiffanyharrison · 01-21-2004, 09:06 PM

thanks you guys!!! its been a difficult journey,ya'll just dont know what weve went through to get a diagnosis on her. thanks again
Tiffany

irish34 · 01-21-2004, 09:28 PM

Tiffany,

My daughter was born with a hemangioma (red birthmark that literally grows) on her upper eyelid. It grew so massive that it swelled her eye shut. We went thru hell and back just to get to a doctor who knew how to treat this. Even then, we couldn't find a Dr in Wisconsin to surgically remove it. We had to drive down to Arkansas Childrens Hospital to have a Dr down there perform the surgery. And even worse we have a Childrens Hospital 15 minutes from our home. I had Dr's telling me it was an infection...it will 'go away in 2 weeks'...the whole shebang. And to think she almost went blind in that eye. In all honesty, the internet saved her. I did soooo much research on the net..that's how I found the Dr in Arkansas.
My motto was: Never Give Up. Your daughter is depending on you to be her voice. Listen to your gut. Not your heart because when it comes time to make difficult decisions many times I found my heart getting in the way. I believe that all of us mothers are born with a gut instinct. Follow that. If someone tells you no, find someone else. There are so many doctors out there...the one you need may be hard to locate but you can do it.
My daughter is now almost 4 and I know how hard our lives have been. Stay Strong. There really is a light at the end of your tunnel. Have Faith. I will say a thousand prayers for your baby!
Good Luck and keep us posted. We always wonder about each other.

Take Care.
Irish