Chiari Online Support Group

Newcomer struggling with dismissive docs

Hello all! I am happy to have found this informative group and I am loving all the great posts and points of view here.

My story as briefly as possible. I am a 43 year old from Florida who has had random health issues since the birth of my second child 21 years ago. It started with slow digestion, strange sensations in my arms, headaches and back pain. My symptoms (I will post them all later in another thread) lead me to try to get to the bottom of my back pain and urinary issues. My MRI a year and a half ago showed many things but the syrinx in my spine had grown in a year from 3.7 to 6.8 cm. And now there was a note of a 3-4 mm ectopic tonsils. So i am at the point of trying to get help.

The problem is that I’ve hurt so long and I look healthy that the last neurosurgeon said to come back when I felt I just couldn’t function anymore and we might talk surgery? He kept remarking on how great it was that I was trying to be active and wouldn’t listen to how hard it was to walk more than 5 minutes without my right leg going numb. But I look great he said. What does that even mean?

Apart from that I love travel, writing, photography and all things curried. Well most things curry. :grinning:

Thank you for allowing me to join even though I’m not yet diagnosed.

Hi, I can’t offer you any advice but I can sympathize with you as I am going through something similar. I too am 443 but I do not have any kids, (I only work with them) I have had minor health issues on and off since I was in my twenties. To make a long story short, I was first diagnosed with Chiari in 2007 but did not follow up on it because I was only having minor headaches at the time. The past few years, my headaches became worse but never did anything about it because I was so busy working. I recently changed jobs and had more time to go to the doc, she sent me for an MRI and as I suspected the Chiari had become worse. She sent me to a neurosurgeon who sent me for a spinal MRI. After a week of not hearing from the doc, I called to check on the results. I had to leave a msg on the machine because nobody answered. The next day, I received an e-mail saying that my test results had been posted to the insurance website patient portal. I waited another week to see if now that the results were in he would call and discuss them with me. When I did not hear back I called and left another message I waited yet again another week and did not hear back. The third time I called, I finally got a human on the machine. Basically all she said was I apologize and the only way the doctor will discuss the results with you is in person and oh by the way, the first available appointment is not until August 21!!! Are you kidding me??? I’m guessing the results are nothing that needs to be taken care of immediately otherwise he would have me come in earlier. I think he is being dismissive of me because I am not a surgery candidate and that is all he cares about. Needless to say, I will be seeing him again. I am now trying to find a different doc that may be willing to discuss my results with me before Aug 21.
I am sorry for what you are going through, hopefully you too will find the right doctor!

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Wow, I’d get a different doctor. (both of you) Someone who listens to what you are saying and is responsive. I had decompression surgery and the doctor really listened and gave me the options, his suggestion and asked what I wanted to do. Someone on here may be able to direct you to a great doc in your area. Hang in there and don’t give up hope!

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I am so sorry to hear that. We put our lives on hold waiting for what to do to feel better. I hope you get answers soon and remember you are the customer of your doctor. He/she is receiving monetary compensation for performing a service. You are within your rights to treat it as any other poorly performing service. Best wishes!

I was very excited that Dr. Trumble is just down the road when I started looking for a doc. But of course he isn’t at Florida Hospital anymore. But I will keep searching. It builds character?:smirk: