Shoulder replacement surgery questions

[Carolina]

Dearest Sjogren's Angels,

Have any of you had shoulder replacement surgery?

My orthopedist told me last year that the next step for my right shoulder is shoulder replacement surgery, which I positively ruled out, at that time.  Never say never, I've found..

I have had two episodes of agonizing pain in the past two weeks.  The last one occurred suddenly last night at 11pm.  On that scale of 1-10, it my pain was clearly 9 or 9.5.  I can't take opioids, so my agonizing pain options at 11 pm are limited.

I did find an old RX for Demorol, left from back surgery in October 2016.  In addition I took extra Naltrexone, and used heating pads.  Oh, also two tablets of Benadryl.  I got to sleep about 1 am.

The shoulder pain is so severe that is causes pain up my neck into my head, and down my arm.

I've made an appointment to see my Orthopedist Monday morning.  The last time I saw him was only two weeks ago to discuss my options for knee replacement.  He won't do knee replacement because I  have profound PN in both legs, and I'm at high risk as a result.  I'm in the process of being fitted for very fancy knee braces, to support my collapsing knees.

Now I will talk to my orthopedist about shoulder replacement.  He said I needed it when he evaluated my shoulders last year, but at the time I don't think he took into account my complete medical profile.  Anyway, I said 'no way' at that time.

I still have trouble getting my head around shoulder replacement surgery, but pain of that magnitude, starting so suddenly, is an amazing motivator.

Angels, I am falling apart.  Tomorrow I will be 76, and that is just a mixed blessing at this point.

On a brighter note, last night we joined our son, his wife, and her father visiting from out of town, for a birthday dinner at a lovely seafood restaurant.  Thank goodness the pain didn't strike until later that night.

Now more than ever I need patience, persistence and acceptance.  I am struggling on all counts.

Hugs,  Elaine

[Jenny]

Elaine,
I feel your pain.  I have had two shoulder replacements on the same shoulder. The first one two years ago didn?t work. Apparently the bone didn?t grow around the implant and it broke. The surgeon said it may have been the Sjogrens fighting off the foreign object, but he was just speculating.  This time he used cadaver bone and it seems to be growing bone. Have you tried all opiates? I can?t imagine going through this without my Norco. I have no side effects from it. Anyway, the key to healing is being diligent about your PT. Both at home and the office. I also think it is important to use a shoulder or upper extremity surgeon and not just a general orthopedic. I wish you luck.
Jenny

[Carolina]

Dear Jenny,

Thanks for your kind response.  It is early days for this decision, if I even have one to make.  I was ruled out for knee surgery, so that decision was taken from me.

I think I may have the very issue you describe about the rejection of the implant resulting in failure of the bone to grow strong around your first implant.   

I also have Primary Immune Deficiency Disorder, and you would think a weak immune system wouldn't cause rejection, but that is exactly what my Immune system does.  It has attacked and damaged my hearing, my moisture system (Sjogren's without autoantibodies), lungs, bladder, Peripheral Nerves and small fiber nerves, esophagus and small intestines.   

I had a bladder tack fail 19 years ago because the material used wasn't cadaver tissue, and my body rejected it.  Two more surgeries later I was left with incontinence far worse than before I tried a bladder tack.

I will ask about my Orthopedist about the use of cadaver bone and I will research that before I see him, as well.  And I will ask about having one of Duke University's Medical Center shoulder replacement specialists do the surgery.

Norco is a combination of Acetaminophen and Hydrocodone.  I cannot take any medication that contains codeine or anything related to codeine: hydrocodone, oxycodone, Talwin, the list is very long.  I can't even take tramadol.

Now that the trauma of the pain episode is receding in my mind, and my shoulder seems calmed down, I am rethinking whether or not I really need this surgery.   But I want to explore my options before the next episode has me frantic again.

I appreciate the time you've taken to share your experiences, Jenny.

Hugs,  Elaine