I just turned 19 on the 12th of September. After a year of being misdiagnosed and almost being killed by too much or not enough iron because of epilepsy medication, I was finally diagnosed with Chiari Malformation type II. I haven’t seen my neurosurgeon in three years and he says I need no testing, only an office visit. Even after telling several of the nurses my ongoing and progressively getting worse symptoms. I get migraines almost every day, I’m lucky to go a day without one. I was diagnosed with a 12-15 degree curve in my spine about four years ago and just losing my insurance because of my age, I haven’t been able to get to a doctor to find out if it’s worse. My back hurts every day and only being 19 this is an awful way to live. Over the past two years my migraines have gotten so severe I feel like my skull is splitting from the back to the front. The only relief I can get when I’m experiencing these is from sitting in a chair and laying my head over the back of the chair and applying pressure to my neck. Am I the only one who does this? The optic nerve in my both of my eyes are damaged and I’ve moved away from my last eye doctor. He couldn’t tell me if I was going through the first stages of glaucoma or if the were damaged from the Chiari. My balance is beginning to be horrible and I’ve never had bad balance. I use to tumble and play soccer. Its hard for me to live like a normal teenager and has been for almost five years. As well as having anxiety and depression issues among all the other physical issues I can’t keep a job for crap and I absolutely dislike depending on anyone for anything. I feel like I’m just going downhill and fast. I’ve begun to hate my life because I don’t feel like I’m living. I’m constantly suffering through day to day activities just so I can feel normal. No one understands the severity of the pain I go through and that’s the hardest part. I’m constantly being pushed to clean, or get up and play with my nieces and nephews, or something I hear constantly is, “you need to get a job!”. I’d love to be able to work and be independent but I just keep having to quit my jobs because of my health. I also experience extreme temperature changes when I lay down. My face gets super hot andI can’t sleep, what is this all about? I need advice and emotional support, some way to help explain to my family and doctors that I’m not able to maintain a normal lifestyle because of these issues and most of all I need help finding a good Chiari specialist. I wish there was a cure for people like me who have to deal with these struggles every day.
I forgot to mention I had decompression surgery when I was 3 years old.
Hello, Brooke!
I have Chiari I, my symptoms aren't as bad as yours, but emotionally I understand what you are going through. I'm 24. My problems started when I was ~ 15-16, I think. Maybe sooner. Now looking back, I don't know how I got through high school. With all the symptoms I had and doctors not finding anything wrong with me, I had to go to school barely moving and being in pain. From all that and huge stress I started having panic attacks and passing out. Even then one of my teachers said:"It's all in your head."
I know the feeling when others don't want to see how bad you are and the closest family members don't even bother to ask "how are you?", and just expect you'll do whatever they need.
When I got away from my family and staretd living with my boyfriend, a lot of the stress went away and I got better. I was working 4-6 hours a day for a few years, until I started to do more and more(not taking into account my fatigue), and 2 months ago I just broke down completely. Cant do anything anymore. I hope this will pass and I'll eventually get back to working 4 hours a day.
I found helpful information yesterday on Conquer Chiari on how to spread awareness among anyone. You can print out those sheets and give them to family, doctors, friends. Check out http://www.conquerchiari.org/awareness/awareness-sheets.html
Also, check out articles/blogs/discussions here http://www.chiarisupport.org/forum/categories/information-to-share-with-loved-ones/listForCategory
Feel free to contact me if you need to talk! I'll be here.
Thank you so much. I’m sorry to hear about you’re recent and past experiences with this. It’s almost impossible to stay positive in the situation people like us are put in. I couldn’t finish school and had to drop out. I went through and still go through what you experienced with the panic attacks and passing out. With awareness being spread as fast as it is I hope and pray that soon there will be some sort of cure or at least a better surgery than decompression. It feels good to talk to someone who is or has experienced the same bizarre things as I have even though I would never wish this pain and struggle on my worst enemy. Thank you for your reply and being here for me. It means more than anyone could imagine.
I'm glad I could help. :)
One thing( I think) you could focus on that would help you possibly more than meds is reducing the stress levels you're under daily. I know it hepled me. I can't tell you hot to make your family understand and get them to be more supportive, but can throw some ideas at you- 1) if they aren't very good at talking or listening, you could write them letters. That way you get to say everything you need to. It would be good if you told them how dropping out of school, loosing jobs and having to live with the symptoms makes you feel emotionaly. Tell them about what you want to do, but can't because of your condition. This all is probably sterssful to them too, so by writing the letter you'regiving them more time to soak i the information(also, people learn better when they are under less pressure). Maybe you can tell them: "it's important to me that you read this." And if they are not used to talk about feelings, ask them to reply in a letter. Tell them that will mean a lot to you.
2) If they know how to listen, then you can try out "spoon theory". You can find that on youtube, and there are some posts about it here, in this forum.
In the past years I've found that talking openly and freely to the people you depend and rely on really helps.
Again- you can contact me at any time, if you want, we can also talk on skype.
Sorry to hear of all the issues.
There is a high incidence of bony regrowth in patients who were decompressed when younger(Boston Children's documented a 50% re-operation rate in patients who were decompressed when <5 years of age).
Much of the frustration with medicine these days is the difficulty with payors(lack of insurance, etc). While all the above coping mechanisms are certainly worthwhile, your last statement is the most important. "most of all I need help finding a good Chiari specialist."
A first start is getting insurance. Social work can often help with that. Sometimes, the most straight-forward way is go to your local ER(make sure it is a hospital that performs neurosurgery and can take care of Chiari patients). If possible, emphasize your pain and neurological changes. Most ERs will do a CT and send you for out-pt follow-up. You don't want to leave until you have had MRIs and addressed your self-pay status with a patient care coordinator/social worker, ideally as an in-patient. Remember, the hospital wants to be paid also so they have a vested interest in finding you insurance(Medicaid, etc). Your insurance will limit your choice of MDs but will at least get you started. At 19, many patients may remain on their family's insurance policy(the Affordable Care Act made that much easier and eliminated pre-existing conditions as a reason to deny coverage).
Any chance you could go back to your surgeon from your original decompression? Many pediatric neurosurgeons will see patients until they are 21 years old.
Have someone help guide you through the health care maze, and that means a professional near you.
Remember, you need to work with someone or you will simply be stuck with an unpayable bill. I suggest going through a hospital because that will often obligate an on call MD to see you as well.