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Jan 14, 2018 Latest post:
Mar 6, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. The short story is that I have neurogenic thoracic outlet syndrome which is a rare condition in which the brachial plexus is being compressed by the first rib and clavicle. Here is the longer story: September 2016 I started having right sided temple headaches with right trapezeus pain. I also had right sided numbness in my face, arm and leg. I was referred to a neurologist at Emory who ordered a Brain MRI and physical therapy. He dismissed the headaches as migraines and prescribed Topamax as a preventative measure. It didn't work. The headaches continued. When i started physical therapy I realized how weak my right arm was. The exercises were impossible to do because my bicep was so weak. My physical therapist thought that issue was coming from my c-spine because in 2011 I had a lamectomy/discetomy at c5-c6 and eventually had a fusion at c5-c6 in October 2014. My physical therapist also thought I might have thoracic outlet syndrome. I contacted Dr. Rodts, my neurosurgeon at Emory, to have him check my cervical spine and the MRI showed only slight bulging (I had to see an orthopedist first who actually ordered the MRI and reviewed it with me. I also saw Dr. Doerr in Athens who is my local spine doctor. Dr. Doerr reviewed the MRI and wondered about the bulging above my fusion level. He also agreed that I might have thoracic outlet syndrome. Unfortunately thoracic outlet syndrome is a diagnosis of exclusion which means you have to exclude everything else. Thoracic outlet syndrome is a rare condition in which the brachial plexus (a bundle of nerves coming from your cervical spine (neck) is being compressed by the first rib and the clavicle. This is caused by poor posture, athletic injuries, car accidents and things like that). By the end of January my pain level was excruciating. The headaches continued and it felt like a knife was in my right scapula all the time. I would wake up each morning with numb hands and my right had would get really cold using the computer, driving and for no reason at all. I saw Dr. Rodts on February 14 in horrible pain. I requested a referral to someone that could diagnose thoracic outlet syndrome. Dr. Rodts thought I might have a tumor in my brachial plexus area. He ordered an EMG - nerve conduction study and referred me at first to the wrong doctor and finally to the head of vascular surgery at Emory, Dr. Jordan. At the end of February, I broke down and went to the Emory Midtown ER during flu season. Mistake! Was given no medication as they said I had a chronic pain condition that they couldn't treat. From the ER I called Dr. Doerr. He ordered MRIs of my c-spine, t-spine, and shoulder. He also referred me to Dr. Thomas at Athens Spine Center for epidural injection at the levels above and below my fusion. The MRIs were fairly normal. The shoulder one showed I might have frozen shoulder so I saw a sports medicine doctor at Emory. This was what I believe to be the lowest point of my journey. My husband Keith was with me and the doctor said I did not have frozen shoulder because I could move my arms. He gave me a trigger point injection that did not work and ordered another shoulder MRI this time going further over to get the scapula area. I cried the whole visit. At check-out I was crying so much that the sweet woman who checked me out gave me a note of encouragement. The MRI showed trace fluid in the bursa behind the scapula. In March, I saw Dr. Thomas and had the epidural injections. At this time I knew I couldn't work anymore and was encouraged to go on medical leave from my work as a pastor; my medical leave officially started April 1, 2017. The medical leave works by having three months of investigation by an outside insurance company. I went on leave without a diagnosis. During this time, I also was having massages at Athens Orthopedic Clinic and was seeing Dr. Jay Erickson, chiropractor on a regular basis. Nothing would help the pain for long. In April I saw Dr. Jordan, vascular surgeon at Emory. I had an arterial/venous ultrasound. Dr. Jordan's resident doctor saw us first and she was very discouraging. She said it seemed like I had compression somewhere, but there was no way to find out where. Dr. Jordan wasn't sure if I had TOS or not. The ultrasound didn't show arterial or venous TOS. He ordered a CTA of my heck/chest. The CTA was done incorrectly at Emory main campus. But Dr. Jordan said he didn't think I had TOS and I was welcome to have a second opinion from Dr. Duwaryi. I consulted with Dr. Doerr in Athens and he ordered an injection in the bursa behind my scapula and also a shoulder injection. He also ended up ordering a correct MRA of my neck/chest with arm movement (I got caught in the MRI tube with my arms raised, but that is another story for another day). It did not show any compression of my veins/arteries. Since I had no other options, I saw Dr. Duwaryi at Emory and he ordered an ultrasound guided scalene injection. This is the one test that can strongly point to thoracic outlet syndrome. Emory's ultrasound machine was broken and they couldn't see me until mid-June. By that time my medical leave investigation would be coming to a close and I needed a clear diagnosis before June so I called my good friend, Dr. Raj Gupta at Vanderbilt and asked if I could have the test at Vanderbilt. He made a call and I was scheduled within 10 days. In the meantime, I had the shoulder injection and saw Dr. Dorris in Athens (it is now May 2017). Dr. Dorris said I had three options 1. Live with the pain 2. Get second opinion on c-spine 3. He could do a MRA of shoulder with scope if I really wanted, but he didn’t think it would show anything. I opted to do none of what he suggested. I had the scapula injection next. Each injection brought a little bit of relief, but nothing was lasting. Also all of these injections were steroids. As a result of all the steroids, my adrenal glands were shutting down (this was discovered by more doctors and lots of blood tests; one of which was done incorrectly and had to be done again - what a common issue in my medical care). On May 26, I had the ultrasound guided scalene injections at Vanderbilt and finally had a day of no pain. It was one glorious day. I went back to Dr. Duwaryi at Emory and he asked why I went to Vandy to have the injection when I told him about the broken ultrasound machine at Emory, he was disturbed. He recommended surgery based on my results. We asked where he would have surgery and he said St. Louis with Dr. Robert Thompson. I was finally diagnosed officially with neurogenic thoracic outlet syndrome. I ended up having surgery August 1, 2017 with Dr. Thomas Naslund at Vanderbilt University Medical Center. The surgery was the removal of my first rib, anterior and middle scalene muscles, and breaking up the nerves of the brachial plexus (they were surrounded by thick muscle). Surgery recovery is 6 months-18 months.