@colleenyoung

Hi Colleen,

Thanks for adding "Advocating for Yourself". I'm sorry to sound so angry in my post but it's because I am. The doctor I found last year apologized to me at my first appointment for all of the doctors I've seen over the last 15 years. She said my case has been mishandled on so many levels and that I may want to consider a lawsuit! I just lost it and started crying. It felt so good to just have some justification after so many years. I had always been told they couldn't see anything that would cause my pain. She pointed out the Tarlov cysts on my MRI and referred me to someone that specializes in treating them. They are an "incidental finding" and all the doctors I had in the past ignored them. My family and I were robbed of our lives together. My husband and I never got to enjoy our marriage and we didn't get to raise our children the way we wanted to because of my health. Today my husband just works to pay all my medical bills we've acquired. My symptoms gradually got worse over the years and now they are so severe I'm pretty much bedridden. Since I've been sitting like this for so long we don't know what the extent of the nerve damage will be after surgery. Not sure if you know what cauda equina syndrome is but I have all the symptoms and then some. It's normally an emergency surgery but because the doctors ignored the cysts I've been sitting like this the whole time! This is why I'm so upset. Had they done the surgery years ago life would have been so much different.

I absolutely agree with you about making sure you understand what your doctor is telling you. It's soooo important! Your Mom sounds a lot like my husband when it comes to scoring their pain and "pushing through it". He minimizes everything! It's extremely important to try to make sure your doctor knows and understands all of your symptoms and how they affect you. I did run into an issue with this. So many doctors are pressed for time and are scheduled to see so many patients per day that they can't possibly sit down with each patient and get all the important information. I had to contact the office with my questions and I made sure to mention that the doctor was in & out of the room so quickly that I never even got to talk to him! He simply came in, took a look at my back, told the nurse to add a medication and then he walked out! That infuriated me. Patients are charged crazy amounts of money for these appointments so they should be allowed to have ample time with the doctor. Huge red flag if you are ever rushed through an appointment. Either say something and demand that you get your time with your doctor or just look for a new one. I think it's so sad because so many people, especially the elderly, leave not understanding their condition and most of whatt was said to them. My mother is one of them. If I am able to after my surgery, I'll be going with her from now on.

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