Bilateral Pectoralis Minor Syndrome~A successful Surgical Outcome:
Primary Diagnosis of Neurogenic TOS-Rediagnosed with Pectoralis Minor Syndrome-Bilateral
My problems began in December 2005. Pain behind both shoulders, trapezius muscles, and in my neck. After having previous tendonitis problems in arms & feet I decided to start water aerobics and work it out. Boy was I wrong! The cold water became extremely painful for me and my pain got worse. I would wake up crying every time I tried to sleep. Finally I went to my Family doctor and I had the usual x-rays of neck, chest, & shoulders. They were negative except for straightening of the neck (lordosis). All blood tests came back normal.
2 months later in Feb 2006 my right arm went numb. Not pins and needles just numb to the touch on the ulnar nerve area. I was referred to an Orthopedic Surgeon. This resulted in MRI's of cervical spine, shoulders, & brain, arterial ultrasound and nerve testing. I was diagnosed with shoulder impingement and possible Thoracic Outlet Syndrome by the Orthopedist and referred to a Vascular Surgeon and a Neurologist.
I was devastated when my brain MRI showed possible multiple sclerosis. My Neurologist assured me the white spots were from migraines and did not look like MS to him. He agreed with the Thoracic Outlet Syndrome diagnosis.
My visit to my 1st Vascular Surgeon was very disappointing. He threw up his arms and claimed he didn't know what I had as TOS doesn't cause shoulder pain. He then said that if another Neurologist or Physiatrist diagnosed me he would be willing to cut out my first rib. I asked if he would try to find out where the compression was before doing surgery. He asked me where I was getting my information and when I said the internet he told me to stay off it. 3 days later I was at the Physiatrist he referred me to. She said she couldn't diagnose TOS and I had already had all the tests done that she knew about. She literally said, "he's passing the buck".
By April of 2006 I knew I had to search for help outside of my area. My symptoms were affecting every aspect of my life physically and mentally. I felt so alone. I searched the internet and found out about some specialists for TOS in Denver Colorado. I called and made an appointment with one. He was my 2nd vascular surgeon. His exam was very thorough and I was relieved I had found a specialist who really understood TOS. I got the vascular TOS diagnosis from him and a 6-month physical therapy protocol to follow. After 4 months of therapy my symptoms worsened and changed. The pain was now also in my ribcage from my armpit down my side. I also was having an electrical shock feeling from my pinky finger up to my elbow.
In late 2006 I tried aqua therapy and again my symptoms worsened. By this time I was also diagnosed with fibromyalgia, TMJ syndrome, costochondritis and tendonitis in both forearms. I sold up my Hair Salon and filed for disability. During this time I had a phone conversation with another of the Denver Specialists, Dr Richard Sanders. He was very helpful.
Spring 2007 I met with a 3rd vascular surgeon I had another arterial ultra sound and it showed compression of the subclavian artery on both sides this time. I was trying to save us money and have surgery locally if possible. He referred me to a 4th vascular surgeon for a consultation and possible surgery. The 4th one said he would cut my rib out and partially cut the scalene muscles in my neck. I would be in the hospital for 1 night. He wanted to go over all my reports, films, etc and would get back with me. For whatever reason this Doctor never called me back after the consultation. When another of my Docs called to ask them why, they said they were " busy with vacations". During this time I had my second phone conversation with Dr Sanders in Denver. I really wanted to meet with him but financially I knew it would mean digging into the retirement funds again.
After trying botox injections, physical therapy, and at least 20 different medications I knew I had gotten to the end of my rope. My life was full of pain, anger and despair. Why did I have this so-called "rare syndrome" and why couldn't I get help? Why is this such a controversial diagnosis among doctors? I decided to put my faith in Dr Sanders and fly to Denver and let Dr Sanders do surgery if he could.
In August of 2007 Dr Sanders diagnosed me with Pectoralis Minor Syndrome. He detached my pectoralis minor muscles from both shoulders through incisions in my armpits. The pain relief has been tremendous. My arm is no longer numb. I found a great Physical Therapist who is working on strengthening my arms. The road to recovery may take a year or two after having nerves compressed according to my Neurologist and my Orthopedist. Dr Sanders calls me regularly and says we will be great "phone buddies" for the next 5 years. At last I have hope that I will get my life back and be able to hold my first grandchild when it arrives in June 2008.
Looking back now, I am more convinced than ever that you have to be in charge of your own health care. Use the internet but use it wisely. Look at where the information comes from. Trust your gut instincts when you see Doctors.
Atosa.org and the members of the forum can help get the word out to other patients. Don't be afraid to ask for help. My hope is that one day there will be more diagnostic tests available for us leading to quicker treatments, and less damage from the long delays some of us suffer going through the TOS shuffle.
Unless otherwise indicated, all original American TOS Association, Inc. information contained on this web site, such as text, graphics, logos, button icons, images, stories and text are copywritten by and proprietary to the American TOS Association may not be copied, reproduced, transmitted, displayed, performed, distributed, sublicensed, altered or otherwise used in whole or in part in any manner without prior written consent.