What Would You Do?
Here is an update on Hank, my right knee. It is likely to be my last update for a month.
I have had two doctors appointments in since my last update, today and a week ago. Last week I met Dr. Horst, an orthopedic surgeon working at Tria.
He asked me some questions, listened, investigated, ordered more tests, and seemed genuinely concerned about the state of my knee and getting to the bottom of the cause.
One of the investigatory things he did was to actually examine and move my knee. For the past four years the doctors listen to part of what i have to offer, look at my chart, look at whatever X-rays I had on file and make their diagnosis. No physical exam, no hands on. And for me the patient, it sounds like, not my department.
Upon investigation, he did warn me, but he moved my knee side to side. Let me explain the movement, holding my femur steady, moved my lower leg side to side. There was a string of bad words as he committed this atrocity to me. Your knee should not be able to move side to side, ever. He was checking to see if my tibial implant, the lower part of the knee replacement, was loose.
What the doctor didn’t know, or see, was what he did, and I am glad he did it to truly check out the situation, caused me the worst pain I have ever felt. It was the worst five to ten seconds of my life. And I know pain. I walked around for five and a half weeks and three weeks, respectively, with ruptured disc pieces floating in my spinal column. I gave birth to a child whose head did not squeeze down as it should as the skull bones were fused causing third degree lacerations. I have paddled through the BWCA with an appendicitis. I know pain. And this was otherworldly. I did the thing where you keep replaying it in your brain, over and over, when I got home. Rory finally gave me something to knock me out, or probably, shut me up. It continues to replay in my brain on occasion. Probably will for the rest of my life.
I felt no ill will towards the doctor for doing what he did, first doctor to actually really investigate and examine.
The doctor ordered some blood tests, looking for signs of infection. I had to ask him, if there actually an infection what happens. They have to pull all the parts, clean things out and put new parts in. A complete replacement. And every time you go in there, you risk more infection, blood clots, more scar tissue, less bone to work with, and so on. In other words, it is something you do not want to do unless you are absolutely sure that is warranted.
Here is a brief history, if you are not familiar with my story.
- Up until 2013 degenerative osteoarthritis progressing in both knees. Maximum lifetime of corticosteroids reached. Supartz replacement disc tried.
- July 2013 fall in Salt Lake City, leading to a hot spot of pain on my knee, still present in a hot spot.
- September 2013 total knee replacement R knee. Hank is born.
- Post replacement, hot spot continues to be a problem. Coincidence or not.
- Mid September 2014 - Second physical therapy post op appointment. Therapist pulls and manipulates knee to beyond 90 degrees siting there is no reason a patient cannot achieve a full range of motion within the first 30 days post op. This is after I am in tears and screaming at him to stop because the pain was unbearable. He refused to stop until I started to kick toward him with my other foot. Not sure if there was damage from this. In theory this should not have let the glue loose, and likely didn’t. But the hot spot of pain had finally started to settle down until he did this.
- February 2014 total knee replacement L knee. Heisenberg is born.
- May 2014, noted with doctor hot spot hurts. X-rays show nothing terribly unusual.
- Post both physical therapy is not able to give me a good range of motion. Pain is increasing in right knee hot spot. Life continues. I do what movement I can, which is limited due to poor range of motion. Noted to family and a few medical people, it feels like the joint is sliding around. I could stand and squeeze my quad really tight and make my knee straight and it felt like it slid into my tibia.
- April 2015 major fall. I actually slid underneath my car because my knee buckled, right knee. Seek urgent care. New X-rays are ordered. Shows a slight possibility that the glue on the implant let loose in the area of my hot spot. Suspect shadowing under the tibial implant, to be exact.
- Summer 2015, pain growing at a monthly rate.
- Fall 2015 seek advise from trusted source in Orthopedic Surgery, a physicians assistant. Meet with initial surgeon also. He puts in an order for a revision, just replacing the tibial component, though zero guarantees that is the cause of the pain. PA also sends me to Rheumatology, Podiatry and a few other specialties, just to be sure that there is not another root cause. All negative. No one orders new X-rays. Only Rheumatology tests are ordered. Knee now bends to the left and into my L knee when I walk causing me to further swing my leg out to walk. Otherwise it feels like it pushes the other leg out of the way. Its weird and getting more uncomfortable.
- Winter 2016 - June 2017, pain is progressing and problematic. Mobility is decreasing. Days I can hardly move. Range of motion of both knees barely reaches 60 degrees. The world, as I have learned, is set up for people with a minimum of a 90 degree range of motion. I now use a rollator often to get around, mobility scooters help but you need to be able to sit with a 90 degree bend in your knees. Cannot stand for more than a half minute at best, making showers challenging, and standing in lines a bit of a pickle. Must fly first class due to having enough room to straighten my legs in flight and be able to get in and out of seat. Again a 90 degree world issue. Sitting too long has its own problems and complicates the situation also. No new X-rays ordered. Nadda happened. I took a break from running around looking for a diagnosis. Mentally I needed the break from dead ends. Gait is unsteady and unusual due to the odd V sideways gait. It is painful to watch myself walk in windows and mirrors. It just looks so darn wrong.
- June 15, 2017 I was having a fairly low pain day. I was flying back from Albuquerque and decided to take advantage of my low pain day. Normally I get airport assistance, again, the 90 degree bend in the knees thing in a wheelchair exacerbates the pain in fun ways. I decided to forego all help and walked half of the ABQ airport (small airport), landed at the farthest gate at MSP, pretty sure we were in Wisconsin, and walked. Walked all over the airport (it was admittedly starting to hurt quite a bit but felt good to be ambulatory). Walked all the way out to the park & ride pick up zone. Walked to get dinner. Walked a bit more. And finally I had had enough and I was home. Came home and rested a few hours. By midnight my knee was a raging ball of pain like I hadn’t felt since I fell in Salt Lake. By morning, the nature of it was changing, instead of it being a hot spot, it was a bright sun, with a hot center and pain rays radiating out in many directions, including up my thigh and down into my ankle. My other knee was now bearing the brunt of my weight and Heisenberg was cranky because of that.
- June 16-29, 2017 I treated this as a flare up from overuse, as one would imagine after the 2.65 miles I supposedly walked (or more) that one day. Not a huge amount of walking, a significant amount for me though.
- June 29, 2017 pain continues to increase, not decrease. It is time to see a doctor. Acute Injury Clinic visit. X-rays, etc. And scheduled appointment with Orthopedic Surgeon. Acute doctor sees that shadow, and it looks darker now than it did in April 2015. I switch from Motrin to Aspirin for pain management. I find it reduces inflammation a lot better with me. Oh, Lyme test was negative, but it was worth testing for it.
- July 14, 2017 Meet Dr. Horst. He listened, he tested. He examined physically. He seem to truly care. He was also not quick to diagnose. He took a very thorough and methodological approach to diagnosis. He wanted to be sure before he said any more to me. He also twisted the shit out of my knee, creating an even greater level of pain and in new areas. I ended up taking a narcotic, partly due to pain, which was riding above a ten after that, mostly trying to forget the twisting motion. He was right to do that, and I would never encourage it, heck no, but it did show that possibly the joint was loose. And that Sandy has reached her lifetime pain tolerance. I was left mostly bedridden for the week. Knee very unstable, aside from the pain issue, hip irritated, and just generally miserable.
- July 21, 2017 Today. Follow up appointment with Dr. Horst. Zero signs of infection. I was relieved. He reviewed the results of the bone scan. His interpretation was that the radioactive uptake was far stronger in the right leg. The radiologist hadn’t thought significant. He ordered one last set of X-rays, a full leg length, before giving his diagnosis. He also had me move my knee one last time for him, to test if the tendon was still viable. It is.
Okay, so the end result is he recommended a revision of the tibial plateau piece of the knee replacement for Hank. He still suspects the glue let loose in the area of the hot spot of pain. Unfortunately, knee revisions are generally a much more painful ordeal than an initial revision, though given my current pain he acknowledged it might not be much worse that I was already experiencing. It also brought additional risks: Risks of additional infection, scar tissue, a potential worsening or non-improvement in my already limited range of motion, would require lengthening the incisions both at the top and bottom, possibly breaking through the bone to get the current implant out and repairing it afterward as my range of motion would limit bending the knee, and most notably, it was not guaranteed to fix my specific issue. It was a hell of a lot to take in. I did throw up in my mouth a little as he explained all of this to me.
As I left the clinic, I let the tears flow as they should. I am scared, confused and unsure of my future. There are huge risks to any surgery, any joint replacement surgery, and the risks compound with revision surgery. Right now the surgery is scheduled for August 21st, ironically what would be my mothers 88th birthday, if she were still alive. Maybe that is a prophecy of a good thing, a bad thing (you would have had to known my mother well) or just a date on the calendar.
Looking at the Xray, the implant in question looks to be in the tibia at a funny angle, whether that is common or not, I am not sure, and two surgeons and others have poo pood it as significant. I do notice that my Right pelvic bone is tilted, a chronic problem. Did that contribute to the pressure on the knee, especially given my Right foot drop? Difficult to say, and I am not even sure there is an answer or whom I would ask for an answer, as the hip would involve Neurosurgery and reflects back to my first back rupture surgery, which was, shall we say, hmmm... Lets just leave that one open right now.
Rory and I spent the evening discussing and researching. Would going to a Pain Clinic provide a cause, a fix or a cure? Would Seeing Mayo really provide a different outcome, given the diagnostic results? The 90 minute car ride to Mayo sounds like Hell on Earth right now. Is there a discipline that has been missed getting an opinion from? The end of the discussion is there is no magic smoking gun. I enter the surgery at my own risk. Not having the surgery, my quality of life continues to erode, really leaving the only option, if it is an option, if not the only option, of risking the revision surgery. Long term pain management means narcotics, which is a zero option with me. Period. End of discussion.
So, my friends, I truly am asking you, what would you do? Would you risk the surgery knowing the outcome is murky, and could potentially make it worse? I really want to know what you would do.
Thank you for stopping by today!
Keep being creative, Sandy