Frustrated By Lack of Help

Hello! A little over a year ago I heard Chiari for the first time. I was having extreme headaches behind my right eye and after some scans my primary doctor mentioned Chiari. After going in off and on for about two weeks the doctor did a spinal tap. The results came back that I had a high white count, their diagnosis was meningitis. They were never able to pin point the bacteria that cause meningitis. After my hospital stay the headache severity was lessened some, but the frequency and fatigue did not. Over the next couple of months I just dealt with the pain and irritating headaches with ibuprofen, but they never went away. In June I started with Topamax, which helped the severity, but not the frequency. In September severe headaches started again. About every two weeks I was in to get Toradol shots as I couldn’t go to work, take care of my daughter, or function. In late October I saw a neurologist for the first time. She put me on propranalol, which just dull the pain. She again mentioned that she saw Chiari on my scans, but didn’t believe that was my issue. In November I found out I was pregnant, the neurologist seemed to dismiss me after this. In late December I started to notice changes with my symptoms; EXTREME fatigue, dizziness when I bend down/sudden movements, stiff neck, pain across my shoulders, and the headaches are constant behind my right eye, down the back of my head, & in my neck. I have done some research into my symptoms since my neurologist has dismissed my symptoms and it seems as if Chiari may be what is causing them. At this point I just want some relief and need to know what I should do next.

So your journey sounds just like mine. I forgot years ago that my primary doctor said my white blood count was high until reading your story. I have had severe migraines and the annoying headaches for as long as my daughter has been alive which is 10 years. My neurologist put me on topamax and I hated the way it made me feel. So then he suggested Botox. That has helped ease the pain but never fixed the problem. Well then about two years ago I started getting whats called exertion migraines any time I coughed, sneezed, laughed too hard, working out etc. So I went back to the neurologist and he did an MRI and he saw herniated tonsils; however, thought it to be benign unbeknownst to me. Well in January 2017 I felt all of my symptoms had progressed and I went back to him where he ordered another MRI. After my second MRI he arranged for a neurosurgeon to contact me. I have been diagnosed with Chiari 1 Malformation. My thought was what the heck is that and how did I get it? My surgeon was very informative and suggested I have decompression surgery to remove a small portion of my skull and part of C1 in my spine. I go in on March 9th, 2017. I have all the same symptoms as you and I feel that you may want to speak with a neurologist. You have to be your own advocate. Let me tell you…no one knows your body like you do. If you feel something is wrong then more than likely some thing is wrong. Its okay to ask for a different doctor if your not getting the help you need. I am sorry for my long winded story but hopefully you get the help you need! Remember “You are your own advocate!”

I have been to a neurologist. She said that she saw that I had a “small” chiari malformation, but didn’t believe it was the cause of my symptoms. She has never given me any other answers as to what it is or may be. My primary doctor is frustrated as he sent me to her as she was the specialist, but feels like I haven’t gotten much help. I am currently taking pain meds to be able to not wake up in the middle of the night because of the headache. I don’t know what else I can do to get help or make some one understand I can’t live like this much longer.

Ask for a second opinion with a Neurologist that specializes in Chiari.

See a neurosurgeon. They usually know more about Chiari than a neurologist & will likely be able to help you more, including understanding your MRIs & the connection to your symptoms. At least that is what I have discovered since being diagnosed in 2002. I related to everything you reported.

cpeppmeier… How I feel for you! The dizziness when bending down and the headache down the
back of your neck; a lot of your symptoms do seem like Chiari. The trick is to find a neurosurgeon that
recognizes how severe this can be and is willing to help you with it. Not all are. I would suggest finding
a different neurosurgeon for a second opinion. Good Luck.

The problem with these conditions is despite what everyone WANTS to believe there are no secret treatments or cures that a few anointed docs know that no one else does. A diagnoses rarely leads to a “cure”

So why does a doc say “I see a chiari but I don’t think that is your problem?” Simply put the experience of hundreds of doctors and thousands of cases, when combined indicates ITS NOT. The anecdotal experience of a few has no meaning. Its frustrating, its discouraging and maddening but when 80% of chiaris the same or worse don’t cause ANY symptoms, its hard to say that 20% do. When a course of treatment (surgical) permanently changes ones body and physiology forever and has no effect or makes the condition worse on frequent basis, MOST ethical docs won’t risk it. The list of chiari “specialists” facing sanctions, law suits, and even prison terms along with “sudden retirements” and clinic closings continues to grow. Thats not to say there is not progress being made and success being found with new treatments, increased shunting, interventional radiology, medications headache clinics etc. Its just not happening surgically.

There are time when surgery is an answer, but it is seldom more than 5% of symptomatic cases. I realize this doesn’t help, but at the same time its important to know that Chiari is the most common and one of the most well known Neorologic anomalies. It is safe to say that aggresive surgical treatment was a phase and one that failed. It is not the first time this has happened in medicine nor will it be the last.

Rarely BTW is Dr. Google accurate, but is rather a sum of anecdotal experiences and in the case of Chiari, “search spamming” There are at least 4 major "chiari foundations that I know of that are essentially fronts for “Chiari Clinics” (some of which are now closed) that dominate the first 6 pages of google. Try google scholar for a bit more accurate research.