tiffanyharrison
01-20-2004, 01:12 AM
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
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
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DonnaKay
01-20-2004, 04:56 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
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, 08:25 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
I wish you and your family the best--I'm "bumping" your question to keep in near the top and in view.
Sue
tiffanyharrison
01-22-2004, 12:06 AM
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
Tiffany
irish34
01-22-2004, 12:28 AM
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
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
SRO
01-23-2004, 12:00 AM
Hi Tiffany --
I just wanted to drop you a quick note -- kind of from the other side of the fence. I'm 36 and was recently diagnosed with a tethered spinal cord and a possible diastematomyelia. I guess that I was *extremely* lucky to have lived 36 rather trouble-free years (but now I kind of feel like I'm crumbling like a cookie :-)).
All that I really want to say is please *try* not to be too worried. My understanding is that they've gotten pretty good at fixing these things (although it is rare and there are some risks). Plus, children tend to bounce back from surgery relatively quickly. (I can't really speak to your question of recovery time though. I've read of adults who have taken a few months to get back to work -- but you know, we're slow.)
Most importantly, if your daughter does need surgery, then attending to this problem now will probably prevent a pluther of complications in the future. She'll thank you. :-)
I also thought that I'd pass along a couple of links that I found during my research... (and I do hope that's not against the rules or anything...)
An encouraging paper on The Long Term Outcome of Patients with Split Cord Malformation (or something like that)...
http://www.neurosurgery.org/focus/jan01/10-1-5.pdf
And this is more from an adult perspective, but there are a few good links in the site...
http://www.btinternet.com/~tetheredcordresources/personal_story.htm
Best of luck to you and your daughter. Please keep us posted!
-- Kathleen
I just wanted to drop you a quick note -- kind of from the other side of the fence. I'm 36 and was recently diagnosed with a tethered spinal cord and a possible diastematomyelia. I guess that I was *extremely* lucky to have lived 36 rather trouble-free years (but now I kind of feel like I'm crumbling like a cookie :-)).
All that I really want to say is please *try* not to be too worried. My understanding is that they've gotten pretty good at fixing these things (although it is rare and there are some risks). Plus, children tend to bounce back from surgery relatively quickly. (I can't really speak to your question of recovery time though. I've read of adults who have taken a few months to get back to work -- but you know, we're slow.)
Most importantly, if your daughter does need surgery, then attending to this problem now will probably prevent a pluther of complications in the future. She'll thank you. :-)
I also thought that I'd pass along a couple of links that I found during my research... (and I do hope that's not against the rules or anything...)
An encouraging paper on The Long Term Outcome of Patients with Split Cord Malformation (or something like that)...
http://www.neurosurgery.org/focus/jan01/10-1-5.pdf
And this is more from an adult perspective, but there are a few good links in the site...
http://www.btinternet.com/~tetheredcordresources/personal_story.htm
Best of luck to you and your daughter. Please keep us posted!
-- Kathleen
tiffanyharrison
01-23-2004, 01:26 AM
Thanks everyone. ill let ya know what i find out. Next friday we have urodynamics again(ugg) and next tuesday i see the nsg to get the answers minus the urodynamics part i am so excited!
Tiffany
Emily-Diastematomyelia,tethered spinal cord,scoliosis(minimal)
catie
andrew
Tiffany
Emily-Diastematomyelia,tethered spinal cord,scoliosis(minimal)
catie
andrew
guynnm
01-24-2004, 02:11 AM
Thanks everyone. ill let ya know what i find out. Next friday we have urodynamics again(ugg) and next tuesday i see the nsg to get the answers minus the urodynamics part i am so excited!
Tiffany
Emily-Diastematomyelia,tethered spinal cord,scoliosis(minimal)
catie
andrew
Tiffany:
Here is a pretty good article on tethered cord
http://cpmcnet.columbia.edu/dept/nsg/PNS/TetheredSpinalCord.html
I work for a pediatric neurosurgeon and he does surgery on children with tethered spinal cord. They do very well, but it will need to be taken care of.
Best
Mary
Tiffany
Emily-Diastematomyelia,tethered spinal cord,scoliosis(minimal)
catie
andrew
Tiffany:
Here is a pretty good article on tethered cord
http://cpmcnet.columbia.edu/dept/nsg/PNS/TetheredSpinalCord.html
I work for a pediatric neurosurgeon and he does surgery on children with tethered spinal cord. They do very well, but it will need to be taken care of.
Best
Mary
QOD
02-01-2004, 08:04 PM
Hi Tiffany.
I am 29 now and I was born with diastematomyelia.
I have had no surgeries related to this but the one when I was 5 mos old to remove cysts from my spine and to remove the spinous processes from a couple vertebrae at T11 level.
I still have control over my bladder and such... but I have issues with my feet/left leg due to developmental differences... I have neuritis in my feet, and my back hurts a lot, not to worry you or anything. (I have other back problems as well.) My feet are 3 sizes different, and I have reduced sensations in my left leg up to thigh level. My left leg is also shorter.
Nothing was done for me as a child... as an adult within the last few years I got orthotics for my shoes which helped somewhat.
My parents really weren't educated on this much, and therefore little was done for me. My childhood wasn't painful or altered due to this, but for limping a little when tired and due to the leg length discrepancy.
Good luck to you and your little girl. I hope and pray that your daughter's dr's keep you well informed and all goes well with her. Any questions you have, feel free to ask me. I'll help best I can.
I am 29 now and I was born with diastematomyelia.
I have had no surgeries related to this but the one when I was 5 mos old to remove cysts from my spine and to remove the spinous processes from a couple vertebrae at T11 level.
I still have control over my bladder and such... but I have issues with my feet/left leg due to developmental differences... I have neuritis in my feet, and my back hurts a lot, not to worry you or anything. (I have other back problems as well.) My feet are 3 sizes different, and I have reduced sensations in my left leg up to thigh level. My left leg is also shorter.
Nothing was done for me as a child... as an adult within the last few years I got orthotics for my shoes which helped somewhat.
My parents really weren't educated on this much, and therefore little was done for me. My childhood wasn't painful or altered due to this, but for limping a little when tired and due to the leg length discrepancy.
Good luck to you and your little girl. I hope and pray that your daughter's dr's keep you well informed and all goes well with her. Any questions you have, feel free to ask me. I'll help best I can.
tiffanyharrison
02-05-2004, 01:41 PM
Thanks everyone for writing to me :) i've decided to cancel emilys surgery and have it done down home where her father can be more of a help with her instead of just being here for the hospital then flying home,plus she really needs to be where the rehab is going to be. I got copies of all her tests,im not real happy with the report off of the ct myelogram part,it states she has spina bifida occulta in the lumbar region most likely into the sacral region(they didnt scan the sacral on this particular one) now this is the second report that has stated she has SBO yet the NSG says she doesnt have it. my understanding is that if anything is missing in the back then its sbo,correct me please if im wrong...Emily has no spinous processes in her entire lumbar region,and it looks like into the sacral, The only thing the report cleared up is the split cord comes back together at l3 after splitting at t11,but she splits at the filum terminale again also(we knew that from mri)...i cant wait to get another opinion then get the show on the road so to speak,i have feelings of guilt for cancelling the surgery here but i know that in the end its the best thing for emily. Got a call for the insurance company yesterday and was very pleased,emily now has a case manager to make sure shes getting the treatment she needs and to make sure she gets what she needs,if its durable medical goods extra pt etc,that made me pretty happy! LOL
Thanks again
Tiffany
Thanks again
Tiffany
irish34
02-05-2004, 03:49 PM
Good Luck to Emily and your family! She is in my prayers!
QOD
02-07-2004, 05:44 PM
Tiffany, in any reading I have ever done, diastematomyelia and diplomyelia are referred to commonly as either spina bifida occulta or SCM types 1 and 2. It's confusing to be sure.
My best to you and your daughter, may Emily be well and surgery go smoothly.
My best to you and your daughter, may Emily be well and surgery go smoothly.
tiffanyharrison
02-08-2004, 11:25 PM
Tiffany, in any reading I have ever done, diastematomyelia and diplomyelia are referred to commonly as either spina bifida occulta or SCM types 1 and 2. It's confusing to be sure.
My best to you and your daughter, may Emily be well and surgery go smoothly.
Thanks,ive read the same thing, her ct reports state diplo but the nsg says its diastema since there is a fibrous band. we will hopefully have smooth sailing once we get back home and have the surgery done asap!
Thanks
Tiffany
My best to you and your daughter, may Emily be well and surgery go smoothly.
Thanks,ive read the same thing, her ct reports state diplo but the nsg says its diastema since there is a fibrous band. we will hopefully have smooth sailing once we get back home and have the surgery done asap!
Thanks
Tiffany