Hello all. I am 23 years old, Active Duty Air Force and was diagnosed with a Chiari 1 Malformation in May of 2011. I have had daily headaches since March 2011. That's when they decided to do a MRI and found my 6.6mm malformation. Last known status ... there is no peg like appearance (i.e- it's rounded on the end) and I have no syrinx. Thankful for those factors, yet still frustrated as can be with all of the symptoms. I have seen 9 different doctors since my diagnosis (not to mention ER doctors), and for the most part they have all played my Chiari off as nothing. I have done extensive research on my own, and believe I understand the disorder pretty well for someone who fairly new to it. Unfortunately, I've found that my doctors tend to know a lot less about it than I would expect or like. I have been treated with prescription medicine for Chronic Migraines since the discovery of my Chiari. I am currently on about 12 different medications, all of which I wish I didn't have to take. The side effects keep stacking up, and interfering with my daily life. My symptoms include daily headaches/ several migraines a month, neck/shoulder pain almost every day, a large lump appears near my malformation each time I have a headache, blurry/ spotty vision 80% of time, poor circulation, pinched nerves in back/ arms, joint pain in knees/ hips, arms/hands go numb or tingle often and turn ice cold, constant intracranial pressure, increased balance issues, random light-head/ dizziness. Lately I have been having vertigo spells that spark anxiety attacks as well, they're pretty scary. Being Active Duty Military, I don't have much leeway when it comes to my job, so most days, I just have to suffer through it. I wish more than anything I could help my Husband have a better understanding of the disorder and he wishes that there is something he could do to help me. Needless to say, with the lack of help from my doctors, I am in a very frustrating situation with this. Within the next 6 months, I am likely to be put up for a med-board with the Air Force, jeopardizing my career and all the work I've put into the last few years, simply because my doctors won't help me much. I am currently awaiting a referral to a Neurosurgeon/ Chiari specialist. However, my Neurologists office has literally ignored me for about 3 weeks now, since they've told me they would put the referral in. During this time is also when these new episodes have began. I've never personally met anyone with Chiari before, so the lack of understanding from my doctors and the majority of the people in my life is quite wearing on my soul. I guess I just need some advise on how to deal with the lack of medical help and how to deal with Chiari and help my Husband/ Co-workers understand it a little more. Any advise is appreciated. Thank you.
I am so sorry you are going through this. My son was diagnosed last year and was blessed with professionals who took it seriously. We were referred to a children’s hospital who had a specialist in the neurosurgery unit. Once you get a specialist it will be different,. Aggrevate your doctor to get that referral. It works!
Hi Annie - I cant really offer any advice i'm afraid because im kinda in the same situation as you.
I have a 12mm herniation - but the tonsils are still rounded in shape and i dont have a syrinx either
Im still waiting to see the neurosurgeon. I was seeing a urologist for my bladder incontinence who doesnt think its related to this (despite the fact my pelvic floor is fine and urodynamic tests were normal too) my GP also sees this as unrelated in terms of my chronic fatigue and cognitive problems.
thankfully i dont suffer from migraines a lot (but do suffer with vision problems) terrible pain in both knees, aching in my thighs, tingling in hands/feet.. the list of symptoms are ridiculous. I really hope you get to see somebody who is sympathetic to your situation! because from what ive read, despite not having the syrinx and the tonsils arent peg like,, we can still suffer :(
please keep us updated!
You might want to find another Neurologist if they are ignoring you. You need to get check out as soon as possible, it can make all the difference in your recovery (I hear). I was diagnosed in 2006 and surgery in 2008 and I was told truth be told that I should have had surgery when I was diagnosed, but the doctor said it was fine. I have a very supportive family, and husband. They listen and understand my pain that I have every day. They keep me on track because I can be stubborn. I want to be able to do things, but my body does not allow me to do things the same way anymore and this is after the surgery. It's different depending...person to person. You will defintely get to see how much your family and husband love you as you go through this journey. I thank God I have a wonderful husband because I got diagnosed after we got married and he could have easily left me but he has stuck by my side. Always listen to your body, it doesn't mean you have to be stagnet it just means you might have to do things differently out of your comfort zone. I pray I was helpful to you. Be Blessed :-).
Thank you everyone for the support. I actually got a step forward today. A nurse practitioner at my primary care doctor's took a look at my case and was very eager to help. She's pushing through the Neurosurgery referral as soon as possbile and brining me in for lab work this week so that we can narrow down as much as possible. I am glad someone is finally stepping up, but of course still skeptical as to how much will get accomplished. I don't think i'll be able to freely breath again until post decrompression surgery (if I ever get there). Wish me luck! I will keep you updated!
Hi Annie,
Please stay on the Neurologist for the referral. You are having some serious symptoms. You are your only healthcare advocate. Call them every hour if you have to. Please let us know how you are doing.
Tracy Z.