Disability and Medical ‘Rules’

I learned no matter what is going on in life, good or bad, life still has a way of moving forward.  This occurred first-hand in many ways following my spinal cord injury and the trial, but to the large extent during the time I was required to apply for Long Term Disability (LTD) and Social Security Disability Insurance (SSDI).

One important aspect for those with private disability is when signing up for this important benefit is once you are approved for LTD, you are required to apply for SSDI. If you don’t, your LTD monthly payments may be withheld. In fact, both private disability and Social Security seem to have so many rules in place that make you fear the system, which, in turn, makes you paranoid that you may do something wrong and not be paid. It’s funny how the mind works when so many negative things are occurring in your life.

Most people know someone who has applied for SSDI and have heard the stories about getting approved. I applied for SSDI four times, reapplied three times, and was turned down each time. The disability company hired an attorney to assist with the process and finally, after three years, I was approved for SSDI. What this means personally is any money received from Social Security is deducted from the amount paid by the private disability provider. However, you still end up with the same monthly income. That is why it was in the best interest of the private disability company to hire an attorney to assist with my filing.  

What most people who have any experience with the SSDI system will tell you is the paperwork and the filing process is out dated and the software used is a nightmare to maneuver. For those with physical limitations, there needs to be steps taken to make the process more user-friendly. My husband and I worked on one section of the filing for six hours and when we hit the submit button, the system said that the ‘file’ was lost and we had to start from the beginning. 

All in all, I don’t believe that individuals who are struggling with a health issue or a disability should be required to ask a family member or friend to assist with such an extensive process. In addition, much of the information is quite personal. For private disability, if you are approved, you are assigned a representative to work with you — why wouldn’t the U.S. Government handle Social Security in a similar manner?  Instead what you get are representatives who act as if you are bothering them when you call with a question and who can’t wait to leave at the end of the day. The telephone system that is in place in the Pennsylvania office where I was required to file disconnects you the first time you are put on hold. You are then required to call back and experience the entire process again — listening to the recording about how you can do many items on-line and what to do during the flu season.

In addition, when there are children involved under the age of 18, you also have to file for them. And, once again, any monies received, are given to the private disability company.  Individuals on disability are only allowed to make a certain amount of money per year, which is based on a percentage of your income when your injury or sickness occurred and is considered your household maximum.

Another aspect of SSDI includes Medicare, which becomes effective 24 months from the approval date of SSDI. Medicare is deducted from your monthly disability payment and includes hospitalization, Part A, and additional medical coverage, Part B. I am fortunate to have private medical coverage and don’t participate in Part B. However, if I am admitted into the hospital, Part A, will assist with the financial burden.  There is no fee for Part A of Medicare. If I change my mind and want to sign up for Part B at a later date, there is only a certain period of time when eligibility takes place and participants are able to register. In some cases there is a fee.

From beginning to end, for me, the entire Social Security process took five years. Since this is such a complex process, I thought that by breaking it down into steps may prove useful. I had no idea what needed to be done and what to expect when filing for both LTD and SSDI.

As far as my health, I continued to fall more often and the Cervical Dystonia and pain continued getting worse. My pain management doctor referred me to another doctor who specialized in Spinal Cord Stimulators to better control pain. While I couldn’t believe I was considering another surgery, if we agreed, I would be able to participate in a trial of the stimulator before committing to a permanent one.  I made the appointments, did the research, interviewed the doctor as well as the company that makes the stimulator and then did more research.  I agreed to have the temporary stimulator placed at the base on my neck and signed on for a week trial.  Was this the hope I had been praying for?

About this same time, I heard about a doctor at Harvard Medical Center — Dr. David Ring. During a surgery on a woman to correct a trigger finger, Dr. Ring mistakenly performed a surgery for carpal tunnel. As he was dictating his notes following the surgery, he realized the mistake.  Instead of heading to the Risk Management Department like most other doctors, including Dr. Liar, he immediately contacted the patient and told her what had occurred. Surprisingly, he apologized.

One physician commenting on Dr. Ring: “In the light of today’s mentality of our profession of ‘always being perfect and never showing weakness,’ Dr. Ring for me represents honesty, openness, professionalism and courage.” Dr. Tom Lee, CEO of Partners Healthcare, a nonprofit organization that runs Massachusetts General, said because of Ring’s openness “he has gone from being known as a good surgeon to being known as a great man.”

Patient safety advocates praised him for calling attention to problems that are often overlooked. Patients send him letters and emails saying they wish their doctor would have been as upfront with them. And he says he believes it has lessened the stigma associated with medical errors. 

To me, Dr. Ring represents what doctors should be — honest, forthcoming and human.  When they make a mistake, they shouldn’t hide behind their hospital attorneys. I applaud Dr. Ring for thinking enough of his patient to be honest and to put her needs over those of his career goals. I wish there were more doctors like Dr. Ring and more honesty presented to patients. After all, we are the ones who are paying for medical procedures, surgeries, etc. and when something goes wrong or a mistake made, don’t we deserve the truth?

I checked into the hospital (another hospital in the same city from the one where my injury occurred) for the placement of the temporary spinal cord stimulator.  The ‘stem’ as the professionals call it, is a device used to exert pulsed electrical signals to the spinal cord to control pain. Spinal cord stimulation (SCS), in the simplest form, consists of stimulating electrodes, implanted in the epidural space, an electrical pulse generator, implanted in the lower abs, conducting wires connecting the electrodes to the generator, and the generator remote control. Patients may choose from eight to 10 different impulses that best help manage pain.

As usual, I was the ‘unusual’ candidate; however, pain will make you pursue any viable option. And, I was tired of taking pain medication and I knew it was taking a toll on my liver. My stem had two electrical leads, would be at the base of my neck, and the hope would be that the signal would bounce from one to the other and reduce the pain in my neck down through my shoulders as well as the pain in my right arm.  Following my research and discussions with several of my doctors, I knew this was asking a lot of the stem. The most successful stems are those used for mid to lower back pain. However, with the trial stem, there was little risk and I felt that if it helped that getting off of so many medications would help improve my quality of life.

One of the nurses in the hospital told my husband and me that her husband had the ‘stem’ and it worked for him. In fact, her sister was also in the pre-op awaiting surgery for her temporary stem. If they worked, there were going to be a lot of happy people in the post-op.  If it was going to work, most people knew immediately. And, if successful, at the end of the week, the temporary stem will be removed, and an appointment made to have a permanent one placed under the skin where they remain for many years.

During the stem surgery, the doctors do part of the surgery while you are under anesthesia and then wake you up and do the necessary tests to ensure reflexes, strength, etc. haven’t been impacted. The nurse’s sister came out of surgery nearly jumping for joy. She felt immediate relief and was already calling the doctor’s office to make the appointment to have the permanent one implanted. It was so inspirational to see her walking and almost running without pain. She said she hadn’t walked without pain for 10 years. What a heartwarming sight it was to see her smiling and laughing.

As I was wheeled into the operating room, I went under anesthesia thinking what it would be like to be pain-free — something I hadn’t experienced for 25+ years. Maybe it was the medication they gave me to relax making me think of those happier times almost as if I was living it. My doctor, who I call Dr. S., knew all that I had been through with Dr. Liar as well as the trial, said, “Ah, now that’s a big smile to take to sleep with you.”  I chuckled and winked. He knew what I needed and the smile that I could only see through his eyes (since he was wearing a surgical mask) said it all. I wasn’t alone and he was going to do his best to make up for the unfairness I had been through.


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!
This entry was posted in Court, Depression, Disability, Dr. Liar, Long Term Disability, Medicare, Pain, Pain Management, Self Discovery, Spinal Cord Injury, Spinal Cord Stimulator and tagged , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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