My best friend has sero-negative RA which has been a blessing because we tend to push each other for the best quality of life. I prodded her into getting a good primary care physician to steer her medical care to take the stress off herself and she has encouraged and helped me along the way too. For years she has been telling me how her orthopedic surgeon and the orthopedic physician assistant she sees have been such a great help to her in her management of disease symptoms. I’ve always been skeptical. As a nurse, I know the reason surgeons go into surgery is to cut! They love it. They live for it! With this knowledge in mind, I’ve always put my friend off when she suggested I start seeing an orthopedic surgeon to assist in the management of my autoimmune diseases. Not that my friend has a bad ortho because she in fact has a great ortho who has never once not listened to her or insisted on carving her body up like a Thanksgiving turkey. It is just that I know these kinds of surgeons are rare, very rare. I dug my heels in and hedged every time she suggested an ortho for my frozen left shoulder issue.
Well, I couldn’t have been more wrong. Having lived with a frozen left shoulder for two years, crying, walking the floor in pain, or not being able to tolerate rolling over on that shoulder in my sleep without waking up in such pain as if I’d been stabbed by an unknown assailant …. I gave in. The last rheumatologist told me that RA couldn’t have possibly damaged my shoulder and insisted I had to have injured it somehow. There was no injury. He insisted that I’d have to get arthroscopic surgery done on my shoulder and have it biopsied to PROVE to him that RA caused the damage to my shoulder. What an idiot! His stance on this subject ultimately lead to me no longer seeing him.
My left shoulder pain started during my second year of diagnosis back in 2010, but it drastically worsened during 2012. I was assigned physical therapy for the shoulder stiffness, pain, and mobility. I only worsened which led to physical therapy being cancelled. In 2013 – 2014 the shoulder began to freeze up. I can’t raise my hand above my head or reach backward with my hand past my hip, nor can I turn my palm over far enough to accept change from a drive through window. These are just a few of the inconveniences I’ve learned to live with. The dull pain the shoulder is constant and radiates to the shoulder blade, down the arm, and into the collar bone region. For the last year, my primary care physician has had me doing exercises for a frozen shoulder that has keep the shoulder from getting any worse, but has not helped it improve the condition.
The last straw was a few weeks ago when I found myself crying in front of the bathroom mirror trying to raise my hand to my hair to part it off and style it. I just couldn’t do it. I made an appointment and got my chin length hair cut into a boyish pixie style and I also made a new patient appointment to see an orthopedic surgeon. The pain in the shoulder is constant. It wakes me up at night hurting. I just turned 48 years old earlier in the month and I knew I couldn’t endure another 2 years much less 20 more with this shoulder like this. I figured if the ortho didn’t have any other alternatives to offer besides cutting on my shoulder, then he wasn’t the one for me. Symptoms had finally pushed me to the point I was willing to take a risk on another specialist. I did my homework in picking out a orthopedic surgeon and ended up choosing one I had previously worked with as a nurse because he had the best patient reviews and was the chief surgeon of his orthopedic group.
I saw the ortho on Tuesday and without looking at my x-rays or the baseline labs and radiological reports I brought with me to build my case to “prove” I have RA, he looked at my hands and examined my shoulders and proclaimed, “This damage was caused by rheumatoid arthritis. How long have you had it?” I know my face must have registered a look of shock! What doctor have any of us ever seen that makes a proclamation like that? Not even rheumatolgists believe us until we spill blood, tears, and have a hissy fit, right??? He told me I have adhesive capsuilitis that is severe in the left shoulder, that in layman’s terms is a “frozen shoulder”. He told me my right shoulder has moderate adhesive capsulitis and if not corrected would end up like the left. I told him I didn’t have any injury to either shoulder and he kindly explained that the constant inflammation had left scar tissue/adhesions in the shoulders. In his best Texas drawl, he said, “Sweetie, why did you wait so long to come see me? You don’t have to live like this!” and I almost swooned at his feet! He shook his head, aghast that I had endured home exercise for a year, lived with the condition for so long, and told me flatly the rheumatologist was wrong. He said, “I can help you!” and I had to blink back tears because he was so firm in his conviction.
I now have some hope that I can regain use of my left arm fully. I will go in on June 3rd for sedated manipulation of the left shoulder. A anesthesiologist will put me under while the orthopedic surgeon manipulates the left arm to bust loose the adhesions that have formed around the rotator cuff due to chronic inflammation caused by rheumatoid arthritis. He explained that he cannot do this with a local injection to numb the shoulder because it is too painful and he needs the arm fully relaxed to manipulate it. He also said the loud popping sounds of the adhesions breaking is alarming. It will be an outpatient procedure followed with 10 business days of physical therapy. He will also administer a strong steroid injection along with a numbing injection to the left arm shoulder. While I am under anesthesia, he said he will also inject the right arm shoulder with steroids to help prevent it from freezing up.
If you think you might have a frozen shoulder or would like more information on “frozen shoulder” or adhesive capsulitis, please visit this link from the Mayo Clinic.http://www.mayoclinic.org/diseases-conditions/frozen-shoulder/basics/definition/con-20022510
You don’t have to live with this type of limited mobility. I will write a follow up blog to let you all know how I do with this procedure.