Hello all, I am new to the forum, but not to pain. I am 33 years old and have suffered with migraines since I was 8 years old; I actually can remember the first one I had. I have been on so many medications my stomach is in a mess; not to mention I also have a chronic pain disorder. I finally decided about 4 years ago that I would bite the bullet and go on something that I would take daily for the headaches after suffering with one for 3 months. I began taking Topamax daily and Maxalt as needed; this seem to help control them and the dosing was adjusted as needed. After a while I begin to experience dizziness for some unknown reason and my primary placed me on Antivert. This freaked me out because I didn't have an ear infection or anything. I did notice that my ears always hurt and felt full causing my to want to stick something in them. As time passed I began to have the bad headaches again, but this time I had to go to the ER. I haven't had to go to the ER for a headache since high school so I was like what's going on. The back of my head began feeling like someone was stumping on it around the clock. I had a CT and it was normal. A few months later same thing migraine for days vision disturbances, nausea, vomiting, back of the head hurting like someone is stumping on me. I had another CT normal also. I started noticing that my vision was getting worst and I could no longer see to drive at night. A couple of months later I started have numbness in my hands and arm; the back of my head and neck also were in terrible pain. I went to my Neurologist and he ordered a C-spine MRI. This showed that it was normal other that I had a cerebellar tonsilar ectopia at the foramen magnum 8mm I believe it said. Now is were it gets interesting. I am a nurse in the operating room and I went to the hospital were I work to the medical records and got a copy of the report before my appointment because I was curious. I panic and had one of the neurosurgeons look at it. He explained it to me a little, but wanted to wait to see what my physician would say how about that jerk wasn't going to mention it; he told me my MRI was perfectly normal. I was shocked. I had to tell him that I had seen it and that I was not doing well; he ignored me told me it was congenital and I would be fine. I have since then had a headache everyday, I see what I call matrix like vision; more than doubles. I also have ringing in the ears. I just do not know what to do or what is wrong with me. The back of my head and neck hurts constantly; I can't even see to drive at night anymore. I can't tolerant loud sounds and the slights chirping sets me off. I just need to know should I be worried.

Dear Lost,
I'm sorry you are going through this. From what it sounds like you have a lot of the classic symptoms of Chiari. I know that it can be scary. I had THE EXACT SAME THING happen to me. My doctor (neurologist) had been treating me for 15 years for migraines. I then had a blinding headache where I felt like someone had sat on my eyes and I couldn't see. Felt like every tooth was going to pop out of my mouth and like my head was going to blow off my shoulders. He admitted me to the hospital and I was there for 7 days while he ran a battery of tests. They all came back "normal" other than my previous dx of pseudo tumor cerebri. Anyway for months he kept trying to pump me full of medications until I couldn't take it anymore. I ordered his office to transfer all of my records to another neurologist down the street from him. When I went to my first appointment with the new neuro she said "I'm sure Dr Michael told you but you have a brain malformation and you need brain surgery." Needless to say I was beyond angry. And scared.

I still don't have many answers, other than the ones I've found for myself. I'm currently going through a huge frustration with doctors and think I may be replacing my PCP of 25 years. It is hard when you don't have the doctor support that you need. But I keep trusting that it's out there for us Chiarians. It's one thing if you opt for the surgery. Because there are always docs who want to cut you open. But to find a doc who will treat the symptoms until you decide to have the surgery is a rare find. One thing I will tell you is that you HAVE to be your own advocate. Research until you can't take any more info. When you speak to the doctors speak with confidence. Because, unfortunately, in most cases we as Chiarians DO know more than the average doc.

Hang in there and keep us posted on your progress. Good luck!

To be honest it sounds like you have had EXACTLY all of the same symptoms i had although i had 18mm of brain leakage into the spinal canal (chaira Malformation) When i had went to the neurologist, he automatically said there was nothing he could do, i was sent straight to the neurosurgeon. I had brain surgery within that week. I had extreme pressure in the back of the skull, with pain feeling like someone was stabbing me constantly with a knife. When i'd stay standing up for about 10 minutes i'd feel extremely dizzy and become off balance easily. I also had double vison, which sometimes became worse. But with this the doctors said it wasn't from birth, it was caused by an accident which caused severe damage to the brain causing it to slowly leak through the spinal canal. But all in all, all of your symptoms are very similar to mind. I hope you find relief soon. My prayers are with you.

Hello, I was finally able get my neurologist o listen to me. I had another MRI today.

Neurologists are just useless if you are diax you need to see a NS

HI, I am a new member and not sure how this works. I too, am a nurse that works in the newborn nursry. I have Pseudo Tumor. My husband and I, found a site that caters to Chiari patients. Dr. Heffer at the Wisconsin Chiari Center phone # is 414-291-1078. From what we have read they are world renowned for treating Chiari Malformation. I was wondering if you are still able to work? I have had my fourth lp shunt surgery and have been out of work since dec.30th. I am scared to death of going back to work due to the severe headaches,dizziness,and my eyes killing me. I do wish you the best and hope this information may help you. dawnb

So sorry it took me so long to reply. I do still work PRN only because I force myself. I have to to pay for my cobra which ends in June. I don't know what I am going to do after that because I can't get any insurance with pre-exisiting conditions. It is hard because I am always in so much pain and I have a duel diagnosis; I also suffer with complex regional pain syndrome. I am at my wits end.

i have almost the same pains and numbness. i was DXed with syringomyelia 20 yrs after i started feeling the symptoms. my Chiroprator sent me for an MRI that's when it was found. it's in my neck that;s where all the pain comes from. luckly it hasn't grown in the 10 yrs after the first MRi. i get one every yr.. i have seen about 6 neuros 4 said surgery and the other 2 said wait till it moves or gets bigger. i even sent my MRI to 2 doctors to read. if the Chiro didn't send me i would still be lost, the doctors i was seeing wouldn't send me cause of the cost or something (prob no kick back). wish you the best of luck.

Sounds like Chiari to me and possible CCI (cranio-cervical instability) due to EDS too. Have you been check for EDS, POTS, TC? Chiari unfortunately is multi-faceted and usually multi-disorders too. I am tired or I would post more but I will try to be back on tomorrow.