Hello my name is Brittaney I am 27 years old and I am newly diagnosed. I have been married for 8 years and have 3 children. I never knew anything was wrong until about a month and a half ago. I have always had headaches but never really thought anything about it. 6 weeks ago I had the worst headache I have ever had. Nothing over the counter was working so I made my way to the Emergency Room. When the headache cocktail and other medications didn’t work they did a CT scan. When the doctor came back and told me that I need to have an MRI done since she saw something but didn’t know what it was. Of course I was terrified thinking the worst. Saw my regular doctor and they ordered the MRI and put me on different medication.
Medication didn’t work, at that time it had been a week straight of this migraine that wouldn’t go away. MRI came back everyone saw the issue but it wasn’t officially diagnosed until Monday of this week. I had my migraine for a little over a month, come to find out I also had viral meningitis. So I am still recovering from that. I saw my neurosurgeon Monday which was when I was diagnosed and he put me on Diamox. That didn’t work for me. I had so many side effects to it so now December 1st I go for my flow study MRI to see how bad it is. Since the medication didn’t work for me surgery is my next step and depending how bad it is a shunt will be placed as well. Being a mother and my children being young I am terrified that they will have this as well. My 8 year old is already starting to complain about headaches which scares the ever loving daylights out of me.
My husband is not very supportive. He’s tired of all my surgeries and feels that I make up a lot of my problems. I have degenerative disc disease on top of everything else and I have had 2 back surgeries with a fusion done already and have to have another one done. My mom feels like she failed me and I have no clue about my dad. He walked out on us when my mom was pregnant and has never seen me. I honestly have no one to talk to and I feel so alone. So that’s my story!
I am so sorry to hear of your troubles! Everyone used to think I was making things up too. My entire childhood no one listened to me regarding my headaches, double vision, etc. I had terrible coordination and learning disabilities. I was diagnosed with Lupus and RA in 2006 as a catchall since they didn’t seem to know what else to do with me and I fit the profile close enough for the medical community. No One thought to look for neurological issues until last Jan when I had a 21 day crazy pressure headache and the Chiari was finally found along with several large syrinx. I had surgery almost 5 weeks ago and my Chiari issues so far are completely gone along with them taking Lupus and RA out of my medical charts Surgery was amazing but I did get meningitis after - a piece of DNA for bacerial meningitiswas found in my lumbar fluid. I a finally home now resting and using a PICC for antibiotics. My husband has been great. I have a son with serious medical and special needs of his own and that has been the most difficult. He has Angelman and so I have had to have a ton of support for him. I have not seen him in 6 weeks. I hope you can find some support and help. You will be in my thoughts. Rest and care is so important. My mom has been going through some guilt thinking the Chiari is her fault and for not taking me seriously when I was a child. It is determined my is a true birth defect. My 25 yo son gets a ton of migraines - always has. He is schedule for an MRI in January.
Hello, I was diagnosed July 2013 when I was hospitalized due to severe dizziness and right eye not focusing. They performed all kinds of tests for stroke and cardiac issues. The MRI finally showed that I had a 9mm herniation. I did research and found a group of surgeons in Dallas that specialized in Chiari treatment. They ordered my MRI/CINE tests and sure enough my spinal flow was being blocked. My Dr performed my decompression surgery in October 2013.
He did the craniectomy and lamenectomy but did not perform the duraplasty because he saw fluid passing as soon as he performed the craniectomy. My relief was short lived and was pain free for only 5 months or so. I would highly recommend talking to your surgeon and make sure the duraplasty is performed. My surgeon admits that he should have gone ahead with it but refuses to go back in due to scar tissue.
I have had 3 other surgeons tell me the same thing. All the recommend is seeing a neurologist and medicate.
Brittaney I am sorry to hear everything that’s gone on. I am glad you finally got a diagnosis even though it is not what you want to hear that you need surgery at least all you are experiencing is finally being validated and you have a reason for it. I am sure your daughter having headaches scares you as a parent you want to do anything to protect them. I hope all goes well at your appointment and you can have the surgery if needed so you can get to feeling better.