My sister has always had headaches, bad headaches. We have always been told that they were just migraines, however the meds they gave her for migraines did not work. Then a few years back my sister started having different symptoms, she began getting numbness in her hands and feet, and when she would wake up in the morning she could only see in black and white and her vision was blurred. After tons of testing she was diagnosed with Chiari Malformation.
What is Chiari Malformation?
Chiari Malformations are structural defects in the bony space at the lower rear of the skull. It is a malformation of the brain. When this happens the cerebellum and brainstem can be pushed downward. This pressure can block the flow of cerebrospinal fluid. If you have a stage 3 malformation and it is not treated it can lead to paralysis.
Once someone has been diagnosed with Chiari Malformation and if their symptoms are severe enough the only real treatment is a decompression surgery. The surgery consist of removing the lower part of the skull at the back of the head along with one or two top vertebrae to relieve pressure and provide more space. Then a piece of muscle typically taken from the thigh is placed over the missing portion of the skull. My sister had her surgery on November 16th 2010. She has had an amazing recovery. She was in a lot of pain in the beginning and that was difficult to watch, but since her surgery she has rarely had any headaches, and her numbness is gone and her vision is completely normal. Since my sister and I are identical twins, and I do get severe headaches located at the back of my head and neck, and since there is not the much research on Chiari Malformation, her neurosurgeon, wants me to get a cat scan to see if I could also have this condition. Simply put he wants to see if this condition has something to do with genetics, he believes that it does, but there really has not been that much research on it especially in cases with identical twins. I have mixed feelings on it, as it stands right now, even though I get severe and frequent headaches I have come to learn to deal and function with the pain. I guess it boils down to this, I saw the pain my sister went through right after the surgery and her recovery, and that is not something I am sure I want to endure. If my symptoms worsen obviously I wont have a choice but at this moment in time I am not sure if I want to be used strictly for medical research.
www.asap.org/index.php/disorders/chiari-malformation
Amanda, thanks for your blog on this subject. Advances in medicine do provide miracles, your sister included. I am glad she is better. I understand your hesitation about getting a scan. I'd like to give you some food for thought. It is only when people consent to being a medical "guinea pig" that doctors and researchers gain new knowledge that will help others. It may also help you avoid the symptoms your sister experienced.
ReplyDeleteVery interesting blog. I have never heard of this condition. I am glad your sister has made a full recovery. I know complications after surgery sometimes set families to wondering why they opted for the procedure in the first place.I do hope you have your scan and find it all clear.
ReplyDeleteTherese Shaath
Amanda my daughter was born with craniosynostosis which is where the frontal bones in the skull are fused together and so she didn't have that "soft spot" that babies get and her head was growing crooked b/c only one side was fused so her brain was only growing on one side. She had surgery to repair when she was 2 years old. I had done alot of research on cranial facial deformities and had not heard of this one. I am glad she was able to get it repaired so she doesn't get the headaches. I know this is not cranial facial but skull related I remember the surgery and everything was very difficult. I am glad things turned out ok! Nancy Ringo
ReplyDeleteI am gald to hear your sister is alright an that the surgery helped her relieve her pain. I hope you do not have to have surgery as well. I am trying to become a nurse and your blog helped me with a disease I haven't heard before. Hope everything turns out well for you.
ReplyDeleteI was relieved to see that your sister was okay. Hopefully the condition is not genetic and will not affect you. It was nice to see that your sister remained tough after the surgery and is now back to normal!
ReplyDeleteBrian Lesmeister
I have never heard of this condition before and appreciate that you posted about this health issue. I am glad your sister is doing better and not having the headaches anymore. Good luck and I hope all turns out well for your sister and you.
ReplyDeleteThanks for sharing your sister's story and the fact you also deal with severe headaches. I always listen and read careful when someone talks about bad headaches. I suffer with headaches and recently, experience one so bad it made me dizzy. Headaches are not fun at all. I'm glad your sister is healing fine. Keep a close watch on yourself as well.
ReplyDeleteI'm glad your sister is recovering well. It always amazes me how people can live most their life completely normal and one day have to go in for a major surgery. If I had a rare condition I would dedicate the rest of my life to research. I would be hesitant also, but if need be I'd do whatever I can.
ReplyDeleteThank you for sharing this Amanda. Until now, I never even knew of this condition. But I am so happy that your sister operation was successful even though thus is not a well known condition. I pray that this is not the source of your headaches but I would definitely check to see if it is. I will have both you and your sister close in prayer. Take care:)
ReplyDeleteSimona Muttilib
I have never even heard of this. Very intersting. My prayers are with you and your sister. Hopefully you will not have to go through the same thing. It looks/sounds just awfully painful!
ReplyDeleteLisa Neal
People always ignore the most common pains thinking they're normal and find out it's something worse too late. Thankfully, your sister was able to get help for her problem with enough time! And hopefully, you won't have to endure the same pain she went through!
ReplyDelete