We have been told that my 14 yr old daughter has Chiari type 1 malformation. Her symptoms started to be noticeable back during the summer. She kept complaining of bad headaches and black outs and dizziness. I took her to the er and they did a ct. They said that she had a bad sinus infection and gave her meds and referred her to a ens doctor. After being on the meds she was getting worse so they did another ct after only about 2 weeks of the first one. Once again they said it was a sinus infection. She continued to get worse and finally I got her into her regular doctor and they sent her to Kalamazoo for an eeg. Came back normal. Then they did a MRI. Came back that her tonsils are 11 mm too low. Well that was on 12-16-11 that we found out. Meanwhile her symptoms were getting worse. She was not able to go to school and has been out since 12-15-11. I don't know how bad her condition is yet, but I know that most of the time she is in very bad pain. it goes from all points in her head and now she is having bad pain in her neck and back. Legs are tingely and rubbery. She is scheduled to see a ns on January 11th. I don't know if I can take her being in pain like this for much longer. Is there anything that we can do??
First off I want to welcome you to the site, there are many helpful people here who are suffering themselves with this condition or are like you watching a loved one deal with it. Next I would like to say that she is very lucky to be diagnosed so early, there are many of us who have dealt for years with this condition without a diagnosis. For tips on dealing with the pain, one thing that I have found that helps with the head pain for me was excedrin (nothing else works for me). For the back and neck pain, warm baths or showers can help as well as finding a new position to be in. Massage can also help the back and neck as well as the legs. I also have triggers that make my symptoms worse and try to keep from them as best as I can (not all are possible to stay away from). My triggers include, laughing, crying, coughing, sneezing, loud taking, etc. Pretty much anything that increases the pressure in my head. Good luck to your daughter and yourself and remember none of us are doctors but we have all been there, and can try to help or just listen : )
Welcome!!!
It is so hard to see your child hurt...There are many other moms here that can 100% relate to all you are dealing with.
I think once you meet with the NS on the 11th you will both feel better mentally.
I do have a question...was a full spine MRI done to rule out a syrinx... a fluid filled cyst on the spinal cord...oft times people with Chiari can develop this.
Please let us know what the NS says...
Peace,
Lori
No, the only MRI is of the head
lori said:
Welcome!!!
It is so hard to see your child hurt…There are many other moms here that can 100% relate to all you are dealing with.
I think once you meet with the NS on the 11th you will both feel better mentally.
I do have a question…was a full spine MRI done to rule out a syrinx… a fluid filled cyst on the spinal cord…oft times people with Chiari can develop this.
Please let us know what the NS says…
Peace,
Lori
The NS will probably order a full Cervical Spine MRI to see if a Syrinx has developed and if he doesn't talk to you about getting a CINE MRI ask him. This special MRI will show if the CSF (Cervical Spinal Fluid) is flowing like it needs too. Often the herniation can cause the flow to become Diminished or entirely blocked. This can cause a lot of pressure related pain. Even pushing the cerebellum against the brain stem.
I know this is a lot to take in. Take paper/pen with you. Not only to remember things to ask but to write down things that he says. Bring a list of all her symptoms. There is a list here in the discussion wall - it is great if you print it and give to your daughter and have her highlight what she is feeling. Some of the things she will not have ever related to it. I know that I didn't when it came to my menstruation cycle. I ended up having a Hysterectomy at 36 - without cysts or Endometreosis (sp). Because of all the pain and missing days from my life.
Here's to some answers and maybe even a little relief. I know I felt better just knowing what I had finally.. knowing that I wasn't nuts and that my pain is real. to often people think because they can't see your pain, that your not ill. Chiari is a very real thing and at times debilitating.
~Lori
Thanks Lori for the advice. That is a good idea to write things down at the doctor because it will be alot to take in.
thanks
mommy.of.two.5483 said:
First off I want to welcome you to the site, there are many helpful people here who are suffering themselves with this condition or are like you watching a loved one deal with it. Next I would like to say that she is very lucky to be diagnosed so early, there are many of us who have dealt for years with this condition without a diagnosis. For tips on dealing with the pain, one thing that I have found that helps with the head pain for me was excedrin (nothing else works for me). For the back and neck pain, warm baths or showers can help as well as finding a new position to be in. Massage can also help the back and neck as well as the legs. I also have triggers that make my symptoms worse and try to keep from them as best as I can (not all are possible to stay away from). My triggers include, laughing, crying, coughing, sneezing, loud taking, etc. Pretty much anything that increases the pressure in my head. Good luck to your daughter and yourself and remember none of us are doctors but we have all been there, and can try to help or just listen : )
its never easy when we watch our children hurting but be there for her offer her comfort and support.
in the mean time might i suggest you try a heat pack and or ice packs may help her back,neck and quite possibly even her headaches a bit. i know sometimes when my head hurts so bad one or the other seems to help me- may not rid the pain but it does ease it a bit.
i dont know how much you were able to look around here but check into this link you may find some helpful information. http://www.chiarisupport.org/page/member-resources
best to you and your daughter
Lisa
Thank you! I’m glad I found this site. My daughter is a freshman this year and she has missed so much school and now she will not be able to play her favorite sport, softball. Good luck to you and your daughter with the upcoming surgery. Keep us posted.
Thanks alll of you! I’m the 14 year old daughter 
thanks for the support & advice
-kristi
Thanks Sherry...I did check into Dr. Frim but her insurance will not cover anything unless we stay in michigan. She is going to see Dr. Eden from Neurosurgery of Kalamazoo. Hopefully she is good and knows her stuff about Chiari.
Sherry said:
Hi Angie and Kristi! Welcome to the site, I know you'll get lots of good support here. I'm sorry to hear about all the troubles. Please let us know what you think of the NS. Hopefully, he'll order the full spine MRI as others have mentioned to rule out a syrinx.
I see we live in the same state, I'm in the Lansing area! If, down the road, you are looking for an expert surgeon, I can't recommend Dr Frim of Chicago more highly!
Take care and keep us posted!
Blessings,
Sherry
Hello my name is Dana. I know exactly what your daughter is going through since ive had 4 chiari brain surgeries and still suffering. Since you are her advocate, continue to press foward to finding answers because symptoms like that is very painful and scary for the victim and their family. ive been experiencing the same and other symptoms in the past 2 months that fustrates my life. One test that my neurosergeon always performs on me is a cine csf flow study of the brain that will reveal how much or limited spinal fluid is flowing between the brain and spine. Im sorry that i dont have any other suggestions but i hope and pray that the surgereon will take her symptoms seriously and get to the bottom of your ordeal.