Chiari Online Support Group

Frustration after Neurosurgeon appointment

After waiting three months to see a neurosurgeon he told me that my symptoms are in no way from the Chiari. He did not even consider ALL my symptoms. Was only concerned with my headaches and just thinks I suffer from Migraines. As we all know Chiari is much more than headaches! I feel beaten. Is this how I will need to live the rest of my life? I am a mom of two boys and work full time. After working all day, I have not much left to give. Ready to give up…

Sorry it went so bad. My last visit with a neurologist went the same way- she didn't care what were my symptoms, I think, she didn't even give me the time to mention more than 3. And because my worst symptom was fatigue, she said :"You're probably depressed." I know how it feels to wait for an apointment for so long an then just be crushed.

Do not give up! Sooner or later you will find a doctor who will help you. In the mean time prepare yourself for the next apointment as best as you can!

It is heartily disappointing to not have your concerns and symptoms validated by a doctor. I am sorry to hear of your experience. You will find in this site and others that that is a common complaint that folks with Chiari have. I do not think that it should be a rite of passage in the CHiari journey, but it seems to be the rule rather than the exception. That other Chiari people experience this disregard does not tend to make people feel better -- I guess dusting off your hat and getting back on the horse to find someone who can help you is the next plan! I am sure that I saw more than twenty different medical professionals over a span of 20 years before I saw a neurosurgeon who said "You have CHiari. I can fix you right up with that" (Well, surgery helped but that was not the cure all).

On a more difficult note - and I am not excusing poor bedside manner, rudeness is still rudeness - is that neurosurgeons realize that suboccipital decompression is a surgery with complications. They are surgeons and they do surgery. They do not refer or recommend other types of treatment as they either do not know what is available or would prefer that other professionals take the time to discuss and refer. They get paid to do surgery.

They do not like to perform surgery when a Chiari patient is experiencing the "softer" signs of Chiari. In the literature and in a surgeon's experience, surgery is less likely to ameliorate these softer signs. These would be fatigue, vision problems, dizziness, aches and pains, and a host of others. They are more concerned with neurological findings. Abnormal reflexes, muscle paralysis, swallowing difficulties - more with signs that your health is at risk (and they like the typical CHiari headache). I realize that for a lot of Chiarians, fatigue is their number one complaint that interfers the most with their life and responsibilities. Unfortunately, fatigue, in a doctor's rational, means nothing when differentiating a diagnosis. I have visibly seen a doctor's eyes glaze over when I mention that fatigue is my biggest concern.

Others have disagreed with me in the past, but this is my approach to speaking with medical professionals. I do not mention fatigue. I save that for talking with friends and family (and a counsellor if present). They are the people who care about me and can help with activity planning to help me conserve my energy and use it wisely. Doctors are to quick to make a mental health diagnosis and I do not need to get them side-tracked from the real diagnosis of CHiari.

I also do not list all the symptoms that I have. I pick the top three that are important to them in preserving my health. When I saw the neurologist (who was the gate keeper to the neurosurgeon). I focused on oral numbness, night-time seizure-like activities, and nystagmus. I had a list of other symptoms a yard long. Some of them came out with further questioning, some did not. The doctor asked about the ones that were of interest to him.

I look at doctors as a way to get the treatment that is appropriate for my condition. They need to believe that Chiari is diagnositically important to my presentation. They are not my friend nor my support system. How I present myself can go a long way in advocating for myself though sometimes doctors have their own preconceived ideas about Chiari. Their attitudes are not about you nor me but about them. Move on to a doctor who can help because doctors cannot be convinced or wheedled into helping.

Good luck with your medical journey and in making life adjustments to accommodate your Chiari fatigue.