I have been in ridiculous pain for almost 15 years now, having had several arthroscopies, multiple synvisc and cortisone injections, regular offloading braces and now a combination of patellar stabilizing sleeve + offloading KAFO braces. I did at one point spend 2 years in a wheelchair. I have done extensive physical therapy to little avail. I use the braces and crutches at the moment, and am preparing for bilateral total knee replacement surgery.
For pain I currently take celebrex 200mg BID & acetaminophen 1000mg QID. I have had bilateral synvisc injections followed by bilateral cortisone injections 3 months later. Braces, crutches, drugs - I do not have adequate pain control.
My muscles spasm and give out, causing the knee to fold out from under me without warning regardless of the braces. My knees actually come apart if not properly supported: the tibia slips right off the plate and tends to rotate to the right, causing the kneecap to slide left. I can't always force it back into place, and the inflammation from this continuous problem which happens mainly at night when I am not in the brace, or when I am trying to shower. It also is now happening even in the braces while going down stairs.
I feel like my only option at this point is the bilateral total knee replacement surgery which I have been putting off for nearly 2 years.
I have some concerns:
1. I have hypogammaglobulinemia, and my body tends to react badly toward foreign elements in my body. Gold earrings are the only thing I can wear without serious infection. An IUD made of plastic and copper necessitated a radical hysterectomy. I do, however, have a greenfield filter which does not seem to be causing any difficulty. So, because of the fear that my body may reject the materials, I am concerned. Also because simple infections seem to require 3X longer on the strongest antibiotics to heal, I am concerned that I may become septic again and perhaps die this time. My immunologist is now performing more tests so that we can start infusions which may help stabilize the immune system. I will be switching orthopedic surgeons so that the immunologist and he can work together regarding my safe recovery.
2. Because I have procrastinated so long and have such an unmanageable degree of pain, some atrophy & compensation issues which have affected my gait and led to additional complicating injuries like 3 herniated discs (L3, L4, L5), left hip erosion, weight gain, etc. I am very worried that my recovery will be hampered. I used to be very active, and I enjoy being active. I miss being active. I want very much for this surgery to significantly reduce my pain level and allow me better range of motion and better mobility. I want to be strong again. I am afraid that the damage done by waiting will prevent this from happening. I also have a friend who had her surgery over a year ago and is still in ridiculous pain and does not have good mobility. One of her close friends is now a double amputee after the surgery. What factors will best determine a maximal result? What do I need to ask my doctor?
So I wonder if the immunologist can somehow test my body's reaction to the various materials before the surgery so the orthopedic surgeon can choose the best component match & cement.
I have some unusual skeletal differences, like anthropoid hips, which may influence the decision about which prosthesis to use and how to place it.
I live on the 2nd floor in this building. Before I can come home I must be able to get up and down 18 steps. I need to be able to go grocery shopping, do laundry, cook, shower, etc. I am concerned about how quickly I will recover and what I can expect - best and worst case scenarios.