Neurosurgeon Appointment Update

[KatWrangler]

We saw the Ped Neurosurgeon last Thursday. He definately agrees Gabrielle's right leg has gotten worse. Even with therapy and electro stim. He wants to wait and see what the Ped Orthopedic Surgeon says. Whom we see this Wednesday.

Basically, right now he won't de-tether her. Says with no other changes other than the leg, he can't risk the surgery. Which we agree. Her back doesn't hurt, legs don't hurt, bladder and bowel are the same as before. The only thing is she is falling but it's because of her right foot turning and she is getting caught up in it.

So I am not sure what is going to happen. We could be looking at different braces or possibly tendon transfer surgery. Which is a temporary fix.

[by-the-lake]

[KatWrangler]

Thank you. We see the Orthopedic Surgeon tomorrow afternoon.

[chann96]

I'm sorry to hear about Gabrielle's troubles. I hope you're able to find some workable answers soon.

[KatWrangler]

I will let you know. We see Ortho at 3:20 this afternoon.

[kmitsch]

My 61/2 month old daughter is having an MRI on 18th of her low back lumbar spine secondary to a birth mark she has there over her spine. Its a flat, red, lesion that has been there since birth. Has not changed or become mass like, etc. It has grown with her. The pedi that evaluated her in the hospital at birth told me nothing but that it would most likely be permanent.. and that the one she had they called stork bite on her neck would fade as would the angle kisses she has on her forehead and eye. All of those have faded a lot but the one on her back remains the same. It wasn’t until a new pedi in the practice who saw her 7-29 commented on it. I took her from there to a pediatric N. surgeon at Children’s in Pittsburgh who specializes in Tethered cord/ spina bifida, etc. He def felt the MRI would be needed to rule out TCS. He said in his practice 1 in 5 kids w/ a mark like hers do have some form of spine problem. I have read so much about this condition and other moms with such similar issues. It blows my mind that she would have an issue, she is so strong, pretty much crawling, sitting up, stands w/ some help with balance. She has normal, (from what I can tell) bladder and bowel . I am sure we will deal with whatever comes from the MRI . I had never ever heard of anything like this and birthmark relationship until 7-29.. Now I see it’s a whole world out there!. Who would have thought birthmarks could tell so much.. in a way what a blessing it really is to help diagnose and treat children early!

[KatWrangler]

A hemangioma, tuft of hair or dimple at the base of the spine can be a marker for Spina Bifida/Tethered Cord.

Gabrielle was born with a hemangioma at the base of her spine. Our Ped blew us off and said it was fine and would get bigger then fade away by the time she was 5 or 6. Well she was incorrect in our case.

It is always best to have it checked out.

Good luck with the MRI. Gabrielle was 4 1/2 months old when she had her first one.

BTW - My 2nd daughter had a hemangioma develop when she was a month old on her lower back (not on the spine). She had an MRI and was checked by our Pediatric Neurosurgeon and is fine. In her case it is just a normal hemangioma. But not in my oldest daughter's case.

[kmitsch]

Thanks.. I have read so much about your daughter and it seems like you are really well seasoned w/ all of this and I really appreciate your input. I initially had read about your other daughter and that she too was going to be checked for her mark. I had always wondered if her MRI was neg. Is tethered cord hereditary? I could not seem to see that it was or wasn’t?. I don’t have any issues nor does anyone in my family but again, couldn’t tell if there is a link between family. Pittsburgh Children’s, I’m told, is a great hospital with some great docs and I am not as nervous about the MRI . It was the sedation I was concerned most about.. but at this point from what I had read on the conditions and markers and on all of these community sites.. the benefit of MRI far out weight the risk. It is def. a mark on her spine about 2 or 3 inches above her tail bone.

[KatWrangler]

Exactly. Even the Crunchiest Mama here in the SNP Forum has to look at all her options. Doing an MRI to make a determination of something not wrong or is wrong for outweighs the downside of doing nothing IMO. Then later find out something is in fact wrong. Once the nerve damage occurs, you can't turn back for the most part.

Do you have any questions about the MRI? I have always been allowed to walk her down to the MRI and stay with her till sedated. If you are outside the MRI room, it is loud. Don't let that scare you. With her first one I was like What the Heck?! What is that noise?

Yep, Delaney is fine. She is a rowdy 2 year old now.

[KatWrangler]

Regarding TC being hereditary. As far as I know, it is not. However, Spina Bifida can be.

As far as we know nobody in our family has TC or Spina Bifida. So we were quite shocked when we got her diagnosis at 4 1/2 months of age.

I asked our first NS what caused it. He said they don't know yet. Just something that happens at about 6-7 weeks gestation.

Here is some info for you from Duke. Their Genetics Department is doing a big study.

http://www.chg.duke.edu/diseases/ntd.html

BTW - What my daughter has, lipomyelomeningocele, is a closed Neural Tube Defect. Meaning her back was closed.

[kmitsch]

I guess my biggest worry for MRI is the sedation and that she doenst have any kind of reaction. That is the part im most worried about. Did you daughter have symptoms early? I read in one of your posts you thought she had them at like 2 mos.. what kind of symptoms did she have? This whole thing is just crazy but its so wonderful to know there are so many moms and dads out there to help and support. My heart goes out to your family as well as so many others i have read about.

[KatWrangler]

Originally Posted by kmitsch

I guess my biggest worry for MRI is the sedation and that she doenst have any kind of reaction. That is the part im most worried about. Did you daughter have symptoms early? I read in one of your posts you thought she had them at like 2 mos.. what kind of symptoms did she have? This whole thing is just crazy but its so wonderful to know there are so many moms and dads out there to help and support. My heart goes out to your family as well as so many others i have read about.

Her symptoms did start at 2 months of age. Eventhough we kept asking the Ped about the Hemangioma on her back. It seemed to us it was getting puffier.

So over a 2 1/2 month period we saw the Ped, Ped Orthopedic Surgeon who thought she had a spinal tumor, Ped Neurologist who thought she had a missing nerve in her leg. It was the Ped Ortho that ordered the MRI and referred us to the Ped Neuro. After we saw her she had the MRI (thanks to insurance and having to get pre-athorizations). By the time she had the MRI she was almost 4 1/2 months old. We were then referred immediately to a Ped Neurosurgeon. Saw him on Thursday, had the first surgery that Monday morning.

Having said that, not all kids with TC show symptoms early. There are plenty of kids on the SB lists and LMC lists that were older when symptoms developed.

In regards to Sedation with MRI's, Gabrielle has always done fine. After the first one she did throw up. But I think I nursed her too fast and it upset her stomach.

When she had Chloral Hydrate (sp?) that didn't work. She woke up during the MRI and they couldn't finish it. Thankfully, they did get enough of what they wanted.

Sedation, medical procedures are always scarey. Especially your first experiences with it.

[kmitsch]

i did read that about tcs and not all symptoms show up early. at this point the wait will be for the MRi results. luckily the N. surgeon is literally right next door to the radiology dept and he said I can come over, call him, he will look up the results.. I do hope that afternoon we get the word. either way she seems really healthy now and strong and meeting milestones she should be.. and if there is an issue we got it early and she can have whatever needs done., done. well I will keep you posted on her results and best of luck to you and your daughter and her next surgery.. . she seems like she must be a real trooper and she is lucky to have such a great mom .. this is my first child so it’s so new and just overwhelming at times. thanks for all the info. you have been so helfpul..

[KatWrangler]

Good luck!