Dealing with Diagnosis, Disability and Depression

Following the appointment at Johns Hopkins, my husband and I headed to the next location to see another neurologist who specialized in pain and hard to treat neurological conditions. She was as honest and forthcoming as the previous Johns Hopkins neurologist. After reading the operative report and the information submitted by the company monitoring my nerves during surgery, she confirmed I did have a spinal cord injury.

During the office visit, she spent time explaining how the injury affected the nerves on my right side and I would continue to have weakness in both arms and legs.  She also diagnosed me with Cervical Dystonia and explained that my Essential Tremor was getting worse based on her review of the medical records. She explained a few options for treatment and asked to work with a local pain management doctor.

Driving home, my husband and I spent a lot of time thinking instead of talking. I had a spinal cord injury, but how did it happen? Why did it happen? And why did the surgeon not tell us the truth? We finally knew what was wrong after so many months and while we should have felt empowered; the hardest thing to understand was why we had to go to Baltimore to uncover the truth?

Arriving home seemed surreal. We left thinking I was going to get better (or at least I was told that I would), but came home knowing I was permanently injured and life as I had known was no longer.  We knew we had a lot of decisions and plans to make. However, where do we start? I wanted to rewind the entire day. In fact, I wanted to rewind my life until I got to the part where I had decided to have surgery.

I had a lot of sleepless nights during the week and what kept going through my mind was the neurosurgeon’s lies and how he told me I was his favorite patient and he was praying for me. During the last appointment and the last time I would see him as a patient he asked me to have another MRI to rule out MS or other serious neurological diseases and to see a neurologist he recommended. It seemed as if he did all he could to avoid telling the truth.

I saw his suggested neurologist a few months later — an employee of the same hospital where my surgery took place. We decided it would be interesting to hear his diagnosis.  During the hour-long appointment he wouldn’t let me answer any of his questions.  Since I was already diagnosed by the two Johns Hopkins doctors (information we didn’t share), we were curious as to how he would handle the appointment. I asked him specifically if I had a spinal cord injury. He said it was doubtful this was my problem. I asked him if he had talked to the neurosurgeon about my case. He indicated that he had not talked to him; however, later he said that the neurosurgeon had told him that he thought I might have MS.  Did or did he not speak with the doctor who did the surgery?

During a follow-up appointment with my local neurologist we learned that he had spoken to the Johns Hopkins neurologist and that the two of them would both be coordinating my treatment. During that same appointment, he found a large knot on the back of my neck.  I was once again scheduled to have a CT of my neck.  Once I had the CT, the radiologist came in and asked if I would have a MRI since they spotted something that needed further review. Even after having both scans, there was uncertainty about the knot and whether it was caused from the spinal cord injury. A week later I had a biopsy done, but there was still no diagnosis. It seemed with each passing day that I developed additional symptoms.

At that same appointment, my medication was tweaked due to the tremor, muscle spasms, nightly bladder incontinence and ongoing pain in my neck and right arm. The doctor scheduled an EMG (a technique for evaluating and recording electrical activity produced by skeletal muscles) for my right side as well as for my lower back and legs since I began having stiffness in my legs and difficulty walking. He also contacted a therapist to provide cane lessons, so I could learn how to walk with it properly.

A few weeks following the EMG, my husband called my local neurologist after he caught me climbing up the steps on my hands and knees. I admitted to him that I had been having a lot of pain in my left leg and was unable to go up or down the stairs.  The neurologist felt it possible that I could have a blood clot so we were asked to go to the Emergency Room for an ultrasound.  Luckily, there was no clot and I was released with a diagnosis of unspecified nerve damage, told to rest, and given stronger pain medication.

As if we weren’t handling enough, I received additional Long Term Disability (LTD) paperwork from my employer. Along with contacting the neurosurgeon for the operative report and office notes, the disability company wanted my husband and I to complete 20+ pages of additional LTD application. I was still unable to write, therefore, my husband completed the application in his spare time.

Around this same time, I began noticing that I was turning inward and spent too much time in bed — only going to physical therapy or doctor’s appointments. I was sinking into a deep depression.  I felt sorry for myself and couldn’t find a reason to get out of bed unless I was forced.  Within that dark place, I was mad — mad at the doctor for the lies and for ruining my life; mad at myself for being so naive and trusting. Now, I admit, I was even mad at God.

With those feelings, my husband and I finally discussed the comment made by the Johns Hopkins neurologist — “I hope that you have a good attorney.”  Neither one of us thought that we would ever have to hire an attorney. We knew nothing about lawsuits, medical malpractice, etc., but what we had seen on television. We talked to a few family members and close friends and all thought we should at least get the opinion of an experienced attorney. We spoke to several and all felt we had a solid case of medical malpractice and that the doctor had deviated from the standard of care. Should we proceed, did we have the money, energy, time? I thought I would be going to back to work soon.  If we didn’t pursue a lawsuit for us, should we do it to prevent others from going through the same ordeal? We knew what we needed to do.

©My Unplanned Life and www.shakinguplife.wordpress.com, 2011.

 

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About mswd

I am an individual living with a spinal cord injury. How the injury occurred, how I found out how severe my injury was and how my planned life suddenly became 'unplanned' is included in this blog. Also included is how the injury has tested my family and me. I believe you will discover it has been both a mentally and physically challenging ordeal and I learned a few lessons along the way. While I am still defining my life’s purpose since the injury, I have uncovered those who are injured, live with pain or have other obstacles to navigate are never able to escape. However, come with me as I explore ways to improve my life, learn to live with multiple neurological conditions, educate others and look for the silver lining. I believe with a little willpower, my caring family and God's guidance I will learn to forgive, hopefully forget how I was treated and dismissed by a doctor and uncover life's new purpose. I pray for painfree days and answers to questions that keep swirling through my mind. I also pray for a cure for neurological conditions and for the doctors to treat their patients with respect. Welcome to my journey. I would love to hear about yours!
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6 Responses to Dealing with Diagnosis, Disability and Depression

  1. kathy says:

    Hey pal. I’m still so sad about how cruddy this has all been. But, your column is very good. Can’t wait to get to the lawsuit part. YOU GO GIRL!

    • mswd says:

      Kathy ~ thank you taking the time to read the blog. Yes, it seems to get more interesting with each post…or at least I hope it does. It was five years of surprises! Hope to see you soon. Thanks for the encouragement! Miss you!

  2. Jo Seale says:

    Marsha,

    As one who has had her share of medical problems and going through this with you at the time I can only admire your courage. Your writing is inspirational and if it helps one person its well worth your efforts. Stay encouraged because its obvious GOD has a greater gift for you to share with others.

    • mswd says:

      Jo — as always, thank you for your support and friendship. As you know, it has been rough, but I do believe God doesn’t give us more than we can handle. Hoping all is well. Miss you friend! Big hugs and good health to you! XO

  3. Colleen says:

    Dear Marsha,

    I knew your husband in high school and we reconnected on face book. Therfore I began to read about his and your life. I have been following your blog; you have amazing strength, courage and beauty. By telling your story and exposing your painful reality others will gain from you. I wish you well and look forward to your continued writing. My heart goes to you and your family.

    Warm Regards,

    Colleen

    • mswd says:

      Colleen ~ thank you for your kind message on the blog and your Facebook messages to Harry! He has been thrilled with connecting with friends via Facebook even though I had to force him to join. I really appreciate him sharing the blog with you and others. I feel like I know you since he has a few stories that he has shared about each friend. I hope that we will get to meet one day so you can tell me your Harry stories. We were in our 40s when we met so I have missed a lot. 😉

      Thank you for your kind words and support. I have mentioned it a few times, but it is messages like yours that keep me writing. I am blessed in many ways (I promise that will be written about as well as my many woes), but have been through more than I ever thought possible. Just wait until I write about being in court! YIKES!

      Wishing you all the best and please keep in touch. Thank you again for your thoughtfulness.

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