My Journey With Chronic Pain By Sara Gilbert Nadler-Goldstein

My Journey With Chronic Pain
By Sara Gilbert Nadler-Goldstein

When one lives their life on a daily basis, no one would ever imagine in the course of a second that it would change forever. I never thought that I would be victim of those very words. On May 24, 2003 I was in a car accident on a parkway and rear ended by two separate cars with two separate impacts. That day changed my life forever. I had been a medical social worker for well over fifteen years spanning the scope of practice from the acute care hospital setting to acute rehabilitation, and then a skilled nursing facility. I practiced in the role of case manager discharge planner. I knew how to navigate the medical system for others.However,you never think that you are going to be the patient. What followed was a year filled with many doctors visits involving many medical specialties including neurology, orthopedics, as well as pain management. I did receive two epidural injections and that did not provide the necessary relief that I needed.
In March of 2004 I saw my neurologist and after an M.R.I. was completed and films were reviewed he stated to me that my back was seriously injured and that I should go to New York Presbyterian Hospital-Columbia University Medical Center for a neurosurgical evaluation. At that point in time what followed was that I was given the name of world renowned neurosurgeon Dr. Paul C. Mccormick Director of The Spine Center at Columbia Presbyterian (Neurological Institute). Little did I know that this was the beginning of my good fortune. On March 30, 2004 my mother accompanied me to the Neurological Institute (Spine Center) where I had undergone this consultation. The Surgeon had told me that I had a herniated disc and that it was affecting various nerves in my spine. He reviewed my medical records, and films.
In addition he even showed us a model of the spine and explained the intended surgical procedure he was to perform. I than arranged to have my spinal surgery at Columbia Presbyterian on April 12,2004. After the surgery I was monitored by my neurosurgeon to evaluate my healing from the surgery,as well as my emotional well being. It was recommended by Dr. Mccormick that I see a pain management physician several months after surgery. He was suggesting this level of care for me as well as educating me on the role of a pain management physician. Dr. Mccormick was most detailed in explaining to me the definition of chronic pain. At that point I was not ready to accept that and I really thought that I could heal myself by means of medication, Physical Therapy, and my neurosurgeon stated that he would give me time to come to terms with the information of my diagnosis of chronic pain. During that time period I tried I tried medications as well as physical therapy. However,there was no improvement in terms of my pain. I was most desperate at this point to accept that I needed help. In May of 2005 I contacted my neurosurgeons office and was provided with the name of a highly regarded pain management physician that he wanted me to see at Columbia Presbyterian.Dr. Michael L. Weinberger Director,pain management center, Chief Division of pain and palliative medicine. Dr. Mccormick was going to communicate the necessary medical reports prior to my appointment. At that time little did I know this was the beginning of my good fortune. In June of 2005,when I presented myself to Dr. Weinberger at the pain center. I told him that I was in desperate need of help and that he was my last hope. I communicated to him that I wanted to live a full and normal life with no pain medications. After a through examination was completed and medical records were reviewed as well as films. Dr. Weinberger immediately presented me with a plan of care. He suggested that I consider a spinal cord stimulator as a modality for dealing with my chronic pain. That day he sent me home with a tape about spinal cord stimulation as well as reading material to educate me on this possible treatment option. However, he didn’t initially put me on a regime of medications to determine if it would help me. On my follow up visit several weeks later, I reported to him that these medications were sedating as well as leaving me with no desire to eat,and so dizzy that I could not drive my car and that was not an option for me. At that point the decision was made to go ahead and start the process for a spinal cord stimulator which is an implanted battery pack with leads and electrodes that target the areas of pain with electrical pulses and a vibrating,tingling sensation that reverses the brains signal from perceiving pain to a pleasurable tingling sensation. The process was completed over the period of several months staring with the psychological evaluation to proceeding with the trial. My trial was in October of 2005 with Dr. Weinberger he did an excellent job in mapping out my areas of pain prior to the trial. After the surgery for the trial. I remember being in the recovery area after surgery,and I was crying Dr. Weinberger expressed much concern and I said to him that I am crying for happiness and that for the first time in a year I had no pain. At that time I was instructed to test the device at home for a week (the leads were not permanently implanted,and I had a hand-held device similar to that of a remote control) I was instructed to keep a journal for a week to monitor my pain patterns. A week later I returned to see Dr. Weinberger and his team of fellows and residents at that time,and I reported to them that I had greater than seventy-five percent pain relief and if you can duplicate this for the permanent implantation than I would like to proceed with this method of treatment. I was most determined as Dr. Weinberger knew to live a full an independent life,and to be able to drive to Long Island where my mother resides. In December 2005 I had my permanent implantation of my spinal cord stimulator with Dr. Weinberger.I am most grateful to acknowledge that my goals were achieved not to be on any pain medications,and to engage in all activities for over seven years. This past December the day before the initial implantation, I went into Columbia Presbyterian to have surgery with Dr. Weinberger to replace my spinal cord stimulator battery as it had reached its end of life. I am fortunate enough to say that I have my new spinal cord stimulator battery, along with doing my daily spinal exercises to maintain the health and strength of my back,and attending the gym several times a week pain free. Dr. Weinberger has given me the most important gift and that is to live a full an independent life. It is also extremely important that the patient have an open and honest relationship with their pain management physician as well as the physician working with other physicians on the patients behalf (see Neurology Now Publication on line February 2013 Speak Up blog Collaboration of care at its finest). I was most privileged to have that level of care and continue to have that level of care nine years later. Dr. Weinberger is caring,compassionate,and understanding of the complexity of my medical conditions. He is an excellent listener and understands what my goals are and continues to understand my future goals. His clinical excellence has made these goals a reality for me. In addition Dr. Weinberger understands me as a whole person. That is significant in your treatment because medical health Chronic Pain affects your mental health as well as your outlook for the future,and how you will live your life. This may was the ten-year anniversary since the accident and in June I turned fifty. I could not have reached these major milestones in my life without the caring,compassion,and support that Dr.Mccormick, Dr.Weinberger, Dr.Blanco have demonstrated over the years,and continue to do so. Every day when I use my spinal cord stimulator I reflect to how grateful I am for the special gift that Dr. Weinberger has given to me. This past June I have been under Dr. Weinbergers care for eight years and when ever I thank him which is either at an office visit or a note, or telephone conversation his response is you did all the work I always say to him that I could not have done the work without a good foundation being built, and most certainly he did. The last ten years have not been easy for me there were surgeries, and they are well behind me, and learning and accepting to live a new normal. As a patient you must stay resilient, positive, and strong, and want to be well.

©2013 Sara Gilbert Nadler-Goldstein. All rights reserved!

Sometimes it Takes a Village–to Treat a Patient

CRPS/RSD and Chronic Pain: Should We Stop Living Because It Hurts?

We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.

Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.

If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.

Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.

If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!

Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.

I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain,  depression and mindset also.

Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.

Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.

While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.

Be good to yourselves!

Don’t stop living because it hurts, survive the pain and go on.

~Twinkle VanFleet

10th Annual Make A Wish Arizona: Walk For Wishes- (Team) Power of Pain Foundation

POPFLogo

Please join the Power of Pain Foundation team and choose the “I Wish to BE…ORANGE” category. Orange being the awareness color for chronic neuropathy pain.

Our Team Member’s at the time of this posting are:

Barby Ingle

Our team goal is to raise $1,000. We would love to exceed that! We have raised $300 and there are 55 days left.

Please consider making a donation on my behalf on my page at:

http://www.kintera.org/i.asp?id=1074023-391201482

Or visit Power of Pain Foundation’s Page at:

and choose who you would like to donate and support.

Please know now that I may not be walking for certain as much as I would love to try. I am however raising funds for my team and the Walk For Wishes. I am still apart of the team. I’m not even 8 weeks Post Op yet and much has to do with follow up appointments and my ability to actually be able to. I still want to support and raise if I can. 🙂

Thank you for supporting Make-A-Wish Arizona. Your contribution is greatly appreciated.

Thank you also for your consideration!

Always be as well as you can be,

~Twinkle V.