Shalee and Chiaris Malformation-anyone else?

[luvcub]

Im just so scared of all this,so shocked and wish I knew of others that have this,I have learned that 1 out of every 1000 have this and alot dont even know it,{it is when the spinal cord is pushing against the brain]and have no side effects,all though Shalee had many side effects that were missleading to us,but known well from the surgeon.
Are there any members that have had this or anyone that has children in the family that have this,it doesnt go away ever,but after surgery the side effects are almost gone.
I have many questions. I have looked at several web sites about this,and most are using huge words,its easier for me if it was in preschool lanuage,so that I could understand it alot better than what it is.
I did go to a few yahoo groups and sign up for the group,and somehow out of that I ended up on a web page by a 11 yr old girl who has this same thing as Shalee has,I signed her guestbook,and 20 minutes later she emailed me,and wants to become friends with Shalee,the email was super sweet,brought tears to my eyes. This little girl has had 2 surgeries. Shalee is to have hers in Dec. sometime,prob around making a rough Christmas even worse.
If anyone here has 1st hand information,will you please let me know?
Im sorry to burden everyone,but when your heart is sick with worry,Ill try anything to seek out answers,lol.
Blessings
Angel

[atprm]

What is Chiari Malformation?

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Is there any treatment?

Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition.

What is the prognosis?

Many people with Type I CM are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent.

What research is being done?

The NINDS supports research on disorders of the brain and nervous system such as Chiari malformations. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and, ultimately, cure them.

Select this link to view a list of studies currently seeking patients.

Organizations
March of Dimes Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

Spina Bifida Association of America
4590 MacArthur Blvd. NW
Suite 250
Washington, DC 20007-4266
sbaa@sbaa.org
http://www.spinabifidaassociation.org
Tel: 202-944-3285 800-621-3141
Fax: 202-944-3295

American Syringomyelia Alliance Project (ASAP)
P.O. Box 1586
Longview, TX 75606-1586
info@asap.org
http://www.asap.org
Tel: 903-236-7079 800-ASAP-282 (272-7282)
Fax: 903-757-7456

[Jenefer3]

My 12 year old daughter has Chiari 1 malformation - it's been a very long year since we found out, very scary, very worrisome, and very stressful. My daughter's was found during a routine examination.

[luvcub]

I have read many of these,I understand them pretty much,except Shalee has an area that hasnt been sealed off,which should be less than 5 mm,is now 25mm,wow,thank you for looking up info on this and the other sites you gave me,hugs to you.













What is Chiari Malformation?

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Is there any treatment?

Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition.

What is the prognosis?

Many people with Type I CM are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent.

What research is being done?

The NINDS supports research on disorders of the brain and nervous system such as Chiari malformations. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and, ultimately, cure them.

Select this link to view a list of studies currently seeking patients.

Organizations
March of Dimes Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

Spina Bifida Association of America
4590 MacArthur Blvd. NW
Suite 250
Washington, DC 20007-4266
sbaa@sbaa.org
http://www.spinabifidaassociation.org
Tel: 202-944-3285 800-621-3141
Fax: 202-944-3295

American Syringomyelia Alliance Project (ASAP)
P.O. Box 1586
Longview, TX 75606-1586
info@asap.org
http://www.asap.org
Tel: 903-236-7079 800-ASAP-282 (272-7282)
Fax: 903-757-7456

[luvcub]

Did you daughter have any side effects that you didnt know had anything to do with Chiari?

Shalee has to have surgery due to section being so large,did your daughter have surgery?

If she had surgery,was she out of school long?

Thanks for replying,
yes,its all very scary,and Shalee is freaked out as well,knows here head going to be shaved,I told her is wil grow back.
Thanks again for sharing this info...
Angel






My 12 year old daughter has Chiari 1 malformation - it's been a very long year since we found out, very scary, very worrisome, and very stressful. My daughter's was found during a routine examination.

[SLance68]

Is this something that was caused by the head trauma she had or is it something that she was born with? If you have any questions make a list of them for the surgeon and make them answer all of your questions before she has the surgery. I was told by a surgeon once to quit looking stuff up on the internet and ask him - that was why he went to school so long and 99.99% of the time the cases you hear about on the internet are the extremes of any condition. Hope this surgery helps her - sounds pretty scary to me.

[luvcub]

hi hon,this was something that was found while she was having tests from the fall,she had no hurts from the fall what so ever,this is something they found on the MRI.
Thanks hon.

[SLance68]

Ok I was just curious I had never heard of this before and wondered if it was from her fall. Glad they did find it though.

[luvcub]

Ok I was just curious I had never heard of this before and wondered if it was from her fall. Glad they did find it though.

yvw hon,Im glad they found it also,and glad nothing happened from her hitting her head.

[cuddlebugg]

One of my best friend's dds has this. She had her first surgery on Nov 26, 2007. One of her main symptoms was frequent headaches which have started to return. They found hers when doing an MRI to see what was causing the headaches. She was out of school for almost a month, still is limited in what she can do in PE, and if anyone touches the back of her head it will drop her to her knees. She turned 14 the day before her surgery, her mom wanted her to have a good birthday. It was and has been rough on all of us close to her, everytime we thing she is getting better (will go 1 -2 weeks with no headaches) they seem to come back worse than before. She still misses quite a bit of school and needs a lot of help with her homework even when she is in school. Her short term memory seems to be affected a bit.

[luvcub]

One of my best friend's dds has this. She had her first surgery on Nov 26, 2007. One of her main symptoms was frequent headaches which have started to return. They found hers when doing an MRI to see what was causing the headaches. She was out of school for almost a month, still is limited in what she can do in PE, and if anyone touches the back of her head it will drop her to her knees. She turned 14 the day before her surgery, her mom wanted her to have a good birthday. It was and has been rough on all of us close to her, everytime we thing she is getting better (will go 1 -2 weeks with no headaches) they seem to come back worse than before. She still misses quite a bit of school and needs a lot of help with her homework even when she is in school. Her short term memory seems to be affected a bit.


This is a horrible thing,and hard on all of us,we all look forward to a good outcome of the surgery,and then side effects return,isnt this horrible?
I wish there was a web site for kids who have had this or kids that have been told they have this malformation,where they can chat,meet others,and answer each others questions,this would be good therapy for them,and make new friends that have been thru the same things.
Shalee wonders how much of her hair will be shaved off in the back,you can tell she is a female,I tell her itll grow back real fast. She tosses me look like,ya right...

[cuddlebugg]

My friend's dd only had a bit of her hair shaved off and they did hers so that it was still long on top and covered it when she left it down. Hope your granddaughter is doing okay.