Reading a lot of stuff here - but very view that I have seen are as young as my daughter. She has no symptoms other than seizures - petite mal ones. I don't know much about this disorder - can anyone help me out here. I know the basics and the dr explained alot to my understanding - but they are sending her to Cooks Children's hospital in Ft. Worth for a consult with a Neurosurgeon - what questions do I ask. I've seen a lot things where surgeries were bad and I'm just worried. She is so little. Thanks for any help!
Mom, I am so sorry that your daughter has this diagnosis, but glad you are here. And BTW she is a cutie! If I were you, I would want to know exactly what kind of decompression they perform, there are different approaches depending on the surgeons preferences - and they are very different.
Bony decompression only - just removal of skull making the foramen magnum larger
With plate on back of the skull- thought to keep scar tissue from building, during the healing process, and causing limited space once again at the foramen magnum
With duraplasty- a material (bovine, synthetic, and other)is sewn to back of opening in brainstem area, creating more space than just a bony decompression
With laminectomy- the back of c1 and sometimes c2 are removed to create more space for brain stem and spinal cord, and sometimes also as way to attach the bottom of the dura.
Removal of cerebellar tonsils - to create more space at the foramen magnum
I have only researched adult procedures, so some may or may not be appropriate for young children. I would ask about each of these and know why the surgeon does or doesn’t perform them. Something else to be aware of are other abnormalities of head. Look into:
basilar invagnation, platybasia, and cranial cervical instability.
Ask the surgeon how many decompressions they have done, incidence of repeat surgeries, and outcomes- 2-3 Decompressions a year would be a deal breaker me. How common is it for their patients to get CFS leaks?
I would just right off the bat recommend getting a second surgical opinion- not a neurologists opinion 
Is this surgeon a Chiari specialist?
Start researching and reading- you will start hit on some of the same subjects over and over and become more familiar with it. Choosing a surgeon is a big deal, it’s not a common surgery and chiari is not a widely understood problem. Unless your daughter is in urgent need for the surgery, take the time and necessary steps to know you trust the surgeon.
This is just a quick list off the top of my head. I hope it gives you some direction to start to.
Ask as many questions as have and we will all do our best to help you.
Jenn
Here is a link to our member recommended surgeons, this includes pediatric surgeons
http://www.chiarisupport.org/forum/attachment/download?id=5129359%3AUploadedFile%3A221343
Elhers Danlos Syndrome/hypermobility is common among chiarians too. It’s a collagen elastin problem that allows ligaments (and many other soft tissues) to become lax and stretchy. This can cause the cranio cervical instability that I mentioned above.
Thank you so much for your information. That helps tremendously! Her doctor is a neurological surgeon at Cooks Children's hospital in Ft. Worth and was referred to me by her neurologist here. The Surgeon's name is Richard A Roberts and I'm really not sure if he's a specialist in CM or not. I don't know how to find out either. Never had something like this ever come up so like I said I'm very new to all this and so appreciate your help on the questions. I printed it out and will definately be asking questions for sure. Can I ask you a question jcdemar - you said to get another surgical opinion but not a nuerologist? Would someone who is not a neurologist know about CM - tell me more about this and why you recomment it!
She has no symptoms other than petite mal seizures which they aren't even sure if they are related or not. So as far as it being an urgent matter - I can't see how it would be since her seizures are very mild and no other symptoms. Thank you so much again for your help!
jcdemar said:
Mom, I am so sorry that your daughter has this diagnosis, but glad you are here. And BTW she is a cutie! If I were you, I would want to know exactly what kind of decompression they perform, there are different approaches depending on the surgeons preferences - and they are very different.
Bony decompression only - just removal of skull making the foramen magnum larger
With plate on back of the skull- thought to keep scar tissue from building, during the healing process, and causing limited space once again at the foramen magnum
With duraplasty- a material (bovine, synthetic, and other)is sewn to back of opening in brainstem area, creating more space than just a bony decompression
With laminectomy- the back of c1 and sometimes c2 are removed to create more space for brain stem and spinal cord, and sometimes also as way to attach the bottom of the dura.
Removal of cerebellar tonsils - to create more space at the foramen magnum
I have only researched adult procedures, so some may or may not be appropriate for young children. I would ask about each of these and know why the surgeon does or doesn't perform them. Something else to be aware of are other abnormalities of head. Look into:
basilar invagnation, platybasia, and cranial cervical instability.
Ask the surgeon how many decompressions they have done, incidence of repeat surgeries, and outcomes- 2-3 Decompressions a year would be a deal breaker me. How common is it for their patients to get CFS leaks?
I would just right off the bat recommend getting a second surgical opinion- not a neurologists opinion :)
Is this surgeon a Chiari specialist?
Start researching and reading- you will start hit on some of the same subjects over and over and become more familiar with it. Choosing a surgeon is a big deal, it's not a common surgery and chiari is not a widely understood problem. Unless your daughter is in urgent need for the surgery, take the time and necessary steps to know you trust the surgeon.
This is just a quick list off the top of my head. I hope it gives you some direction to start to.
Ask as many questions as have and we will all do our best to help you.
Jenn
Also you said 2-3 decompressions a year - is that because that is not enough?
MomofBryn said:
Thank you so much for your information. That helps tremendously! Her doctor is a neurological surgeon at Cooks Children's hospital in Ft. Worth and was referred to me by her neurologist here. The Surgeon's name is Richard A Roberts and I'm really not sure if he's a specialist in CM or not. I don't know how to find out either. Never had something like this ever come up so like I said I'm very new to all this and so appreciate your help on the questions. I printed it out and will definately be asking questions for sure. Can I ask you a question jcdemar - you said to get another surgical opinion but not a nuerologist? Would someone who is not a neurologist know about CM - tell me more about this and why you recomment it!
She has no symptoms other than petite mal seizures which they aren't even sure if they are related or not. So as far as it being an urgent matter - I can't see how it would be since her seizures are very mild and no other symptoms. Thank you so much again for your help!
jcdemar said:Mom, I am so sorry that your daughter has this diagnosis, but glad you are here. And BTW she is a cutie! If I were you, I would want to know exactly what kind of decompression they perform, there are different approaches depending on the surgeons preferences - and they are very different.
Bony decompression only - just removal of skull making the foramen magnum larger
With plate on back of the skull- thought to keep scar tissue from building, during the healing process, and causing limited space once again at the foramen magnum
With duraplasty- a material (bovine, synthetic, and other)is sewn to back of opening in brainstem area, creating more space than just a bony decompression
With laminectomy- the back of c1 and sometimes c2 are removed to create more space for brain stem and spinal cord, and sometimes also as way to attach the bottom of the dura.
Removal of cerebellar tonsils - to create more space at the foramen magnum
I have only researched adult procedures, so some may or may not be appropriate for young children. I would ask about each of these and know why the surgeon does or doesn't perform them. Something else to be aware of are other abnormalities of head. Look into:
basilar invagnation, platybasia, and cranial cervical instability.
Ask the surgeon how many decompressions they have done, incidence of repeat surgeries, and outcomes- 2-3 Decompressions a year would be a deal breaker me. How common is it for their patients to get CFS leaks?
I would just right off the bat recommend getting a second surgical opinion- not a neurologists opinion :)
Is this surgeon a Chiari specialist?
Start researching and reading- you will start hit on some of the same subjects over and over and become more familiar with it. Choosing a surgeon is a big deal, it's not a common surgery and chiari is not a widely understood problem. Unless your daughter is in urgent need for the surgery, take the time and necessary steps to know you trust the surgeon.
This is just a quick list off the top of my head. I hope it gives you some direction to start to.
Ask as many questions as have and we will all do our best to help you.
Jenn
If I were you I would call the office of Dr Roberts and just ask. If I’ve learned anything through my process it’s that we have to advocate for ourselves by making sure we are getting the best possible care by the best possible people. Just because you were referred to a specific hospital or specific doctor does not necessarily mean that it’s the best option for your daughter. The doc you were referred may in fact be awesome! Just make sure you trust him or her.
Neurologists typically are not very up on the latest Chiari news and are not generally thought of as experts. If you set out to get another opinion, or third, or fourth, then get the opinions of pediatric neurosurgeons- the ones who actually operate- not neurologists.
For me, a surgeon who does only a few Chiari surgeries a year would not be my first choice. There are surgeons who perform the decompressions more frequently than others and have better outcomes than others. These are just my opinions here.
Jenn
No I value your opinions because your experienced with this and I am not. Thank you so much! I do appreciate your help! Immensley!
Bryn had her last MRI before her neurosurgeon appoint Dec. 4 - it showed fluid in the middle of her spine? Anyone know what that means. Haven't had anyone discuss this with me - think maybe they are waiting until we go to the neurosurgeon! From what I get it isn't supposed to be in the canal in the middle but on the outsides of the spine and around the brain. ??
Bmom, not too sure what it means??? A CFS leak? Or could they be talking about a syrinx - a cyst within the spinal canal?
Yes I think they were talking about the syrinx!
Can you get a copy of the MRI report before you see the NS again, and research what she has. I hate to speculate. I’m sorry there is something else to look into- its A LOT!
I have the MRI's - I'm taking them to Cooks Childrens. She has CM type 1 with Syrinx
jcdemar said:
Can you get a copy of the MRI report before you see the NS again, and research what she has. I hate to speculate. I'm sorry there is something else to look into- its A LOT!
Hi! My daughter is 5 too & was recently diagnosed with the same as your daughter. My daughter has had no symptoms other than headaches, but the Dr doesn’t think the CM is causing her headaches (b/c they are in the front). We are in TX too. We had our 2nd MRI follow up today & surgery was recommended. We are going to get a 2nd & possibly 3rd opinion before moving forward with the surgery. The surgery completely terrifies me. We found her syrinx & CM b/c we were checking her brain for tumors, etc…
Sounds exactly like my daughter. Keep me informed on how your daughter is doing. Same age - wow. Where did you take her that they recommended surgery? I don't blame you for 2nd and 3rd opinions I would do the same thing. We were told at Cook's Children's to come back in June - and they will redo the MRI's and check her and see if she's gotten worse then they will decide. They also found a possible tethered cord. We also found hers because she was having seizures and we were looking for what was causing those. They are saying the CM and syrinx are completely different from the seizures. We need to say prayers for our daughters healing. Thank you for sharing your story with me. Keep me updated on her progress please!