Need Info......Please Help!

S.,
Are you located in the Austin Area? If so, you might want to look into UT San Antonio for more opinions. So far, it is the closest Medical School/teaching hospital to Austin. Scott and White is in Temple but I think it is mostly residency prgms. (The TX A&M Medical School in Round Rock is just breaking ground). I would also consider UT Southwestern in Dallas. I know there are good programs in Houston too...I just haven't lived in that area to be able to name them. The drive to Dallas or Houston from North Austin is about the same.

My husband (who is an OT) says that he has 2 students who have it as well and no surgery. But, they have prescriptions from their doctors to confirm to the school system that your daughter does not participate in PE, tumbling, contact sports, certain recess activities, etc. He suggested seeing a neurologist for more specifics for precautionary measures and pros and cons for surgery. Precaution is the key. The school system will need a doctor's order, etc. My advice: always get a second and/or third opinion no matter what.

Here is a link that may be of use:

http://www.or-live.com/memorialhermann/1327/

it's a webcast of a decompression surgery, for a Chiari malformation. (done here at Memorial Hermann children's hospital). The Neurosurgeons provide a lot of insight on the condition, symptoms, treatment, etc. Very informative.

Hope this helps.
A.

he following website not only explains your daughter's condition in detail, but offers books, symposiums and other products for you to purchase to help further understand it. It also offers a support group for parents of these kids. From what I read, it is not often that someone as young as your daughter is diagnosed with this. Normally it is not diagnosed or symptoms do not appear until later in her deveolpment.

Unfortunately, also, according to what I read...they are still researching even if it is hereditary and so the only option I saw was surgery as well.

I hope that the website helps you out!!

Good Luck...

S.,

My sister as well has this. She is about to be 35yrs. old. and it was discovered in her about 8yrs. ago after she began having sever headaches and blackouts. Unfortunelly surgery for her is out of the question. She had to met with over a dozen spinal surgeons at on time along with the neurosurgeon to discuss how they would handle her case. Her spinal cord is "tethered" and pull the base of her brain below her scull. To perform her surgery each spinal Dr. would have to "untether" each cord with out causing anymore damage or paralysis. Which they all agreed was to risky. So no surgery for her. Then one of her children was found to have it only a month ago. He is 13yr. old. The Dr. told my sister that theirs is related to her spinabifida. She was born with a very mild case of spina bifida. No problems walking, she is paralyzed internally. So growing up she had to use a catheter to urinate and enema often to clear her bowls because she never felt the sensation to "go". As an adult she was able to have children, (3). And due to where she was paralysed she didn't feel labor pains. Some people would call her lucky, but with all that she deals with on a daily basis, I wouldn't. She is blessed in many ways. And in any situation you have two choices to make 1. be grateful it's not worse and praise God everyday for what you do have, or 2. live in misery and self pity for all the problems that you face each day. She has done both. And the second is hard on everyone. So all I can tell you is pray, and count your blessing each day, and Heavenly Father will see you through.

God Bless you and your family. And don't ask "what do I do?"
ask "when do we get started?"

Dear S.,
Start by being very careful about what you read on the internet. You can scare yourself to death with ALL that information. My understanding is that the 1 indicates a less severe and surgery is not necessarily recommended. As a matter of fact, there is a possibility of it going away completely. I have several friends going through the same thing and two of which have daughter's with a level one. One of them they have been watching for several years. It was one that might go away and has not, but has not gotten any worse. The other is a recent diagnosis and they are in the "watch it" stages. I have a third friend that her daughter, now almost 30, had surgery at age 27. You are welcome to email me directly if you would like to be connected with some other moms dealing with the same problem. ____@____.com A.

Hello S.-

I'm so sorry that you and your family are going through this. While I don't have any first hand knowledge of this disorder I did remember that a family was featured on Extreme Home Makeover in which several members of the family had it. Here is a link to the website that the mom had set up to support other families with the disorder. I hope you find it helpful http://www.chiaripeople.org/aboutus.php

Good Luck and my thoughts are with you and your family,

K.

go to the best specilist you can find in your area and do as they say no mom out here can tell you what to do only a real DR my prayers are with you
L.

Hi S.,
My sister found out she had chiari malformation in her late 20's when she started having shooting pains after a car accident. She has never needed surgery but needs to be extra careful to avoid headtrauma. She is in her late 30's now and lives a normal healthy life. She emailed me this link years ago whens she discovered she had c.m. and found it very helpful. I do wonder how many people out there have c.m and don't even know it.

http://www.pressenter.com/~chip/chiari.htm

I hope this site is informal and wish all the best.

C.

My neice had this and she was around 6 when she had the brain surgery to fix this problem. Email me any questions that you might have. I know what you are going thru. This is a very scary time for you and her. You and your daughter are in my thoughts.

your daughter will have to have surgery. im sorry, this must be incredibly stressful for you. fortunately, you are in the houston area (im assuming) and you have many wonderful neurosurgeons at your disposal. you need not travel to another state to have your daughters surgery. i am a nurse and worked many years in the PICU in both Texas Childrens and Childrens Memorial Hermann and you daughter will be well cared for in either facility. this surgery is fairly common and children do very well afterward.
blessings and hope for a smooth course for you and your family.
t

S., I am just now catching up on my emails from the last week, after being out of town, but I wanted to answer your question. My son also had a Chiari malformation and the surgery to correct it at age 7. It was discovered through a series of tests, because of having scoliosis, and that is really rare in boys that young. The neurosurgeon felt it could be causing his scoliosis, so we had the surgery. He did great, and was up and around so quick- kids tend to recover more quickly than older people, I think we went home in 2-3 days. He is now 21 and perfectly healthy, and smart,although they would not let him play football, or do gymnastics because of the instability of the neck. If your daughter is not having symptoms, that would make the decision more difficult, but if she is having headaches, numbness, etc, then you have to weigh whether it is worth the surgery to relieve the symptoms. Good luck.

There are excellent, top notch neurologists and Texas Scottish Rite Hospital for Children in Dallas. I know that's far, but the hospital and services, including surgeries are free! The hospital runs off of donations, endowments, etc. You may want to look into becoming patient--usually there's a long wait, but believe me it can be extremely useful in the long run. The only requirement is that you have to be a resident of Texas. I used to work there in the psychology department, and knew a lot of the neurologists since we did the intellectual/emotional testing for them. They are truly experts and interact wonderfully with children and families. People from all over Texas come there and their Family Services department can help with accomodamtions needs for your family as well, including meals! The website is www.tsrhc.org.

Hi S.,
Hope you are well. That info floors me. However, there is help. I just saw an episode on medical incredible or mystery diagnosis about this very issue. Basically, your child has too much brains. The brain matter is extending into the region below the bony part of the skull which is where her spine is. This is how I understood it to be. The girl was 15 and the only way she got relief was by wearing a c collar because it would relieve the pressure and therefore the headaches or numbness in her extremities and so on. I know it must be scary but the alternative could be worse.
MM

My sister found out she has this about 8 months ago (when she was pregnant with her fifth child). My only advice is to find a neurologist you truely trust and one that you like the way they interract with your daughter.

They told my sister the only real cure was surgery also. She declined because she didn't want to risk losing the baby but her headaches are getting worse now, so we're about to revisit the neurologist and see what they say.

Just know you are not alone. Apparently, it's not uncommon and highly treatable with a good success rate (from what I've read and heard)

My daughter had this at 7 as well. We went to a wonderful doctor in Phoenix, AZ at the Barrow Neurological Institute. His name is Harold Rekate, MD. His surgery is state of the art and our daughter (after having a surgery in Austin that failed) recovered well. I know it is stressful to think about surgery and about going out of town for it, but it was well worth it in the end for us. God bless you. You are not alone!

I just found out that my 10 month old son has Chiari 1 Malformation. It is stressful. We are unsure if he will have to have surgery yet. We will not know anything unntil tomorrow. I am stressed out so I can imagine how you are feeling. I am praying that all goes well with you. Let me know what happens. They told us that it is when the cerebulum tonsels are hanging into the spinal canal, they never said anything about the brain on the spinal cord. I hope that is not the case in my son or your daughter.