Update on path to diagnosis of knee problems:
Read Previous updates:
Knee is not Normal
Knee update 2 post doc visit
As a regular follower of my site and friend, you know I have a lot of knee problems. Follow the links above to get up to speed if you are new to this site.
After last Thursday's trip to the Acute Injury Clinic at Tria Orthopedics, the doctor order a lot of blood tests and a bone scan. The bone scan being a nuclear medicine study of my knee using an injection of gamma rays to see if there is an uptake in radiation there which might indicate movement of the replacement joint at that site.
My tests came back normal, with one exception, one indications there is inflammation somewhere in my body. It could indicate that there is an infection at my replacement joint, which is something that has been debated for a while. No one has yet to draw fluid out of the joint directly and test for it. Sigh... And the X-ray shows some general swelling the the joint area, but not large pockets of fluid in the joint space.
I am happy that I am really, for all intents and purposes, healthy. Truly. Even with Celiac Disease and a few side issues, nothing effects me and my day to day quality of life more than joint pain, in particular, this Right knee. And of course, any onion I digest tends to cause some immediate and rather bothersome digestive issues.
The doctor I saw last week is gone on vacation all week so I had to call, rather than get the test results through My Chart.
The nurse was happy to give me my results. Truly, she was bubble and excited for me when she called back. She called to tell me my bone scan was normal. That means that the scan indicated the radioactive uptake was normal following a joint replacement and that indicates that there is no movement of the joint on top of the tibial plateau as had been thought, or possibly indicated on plain film X-ray.
I apologized to her for my deep intake of breath and a few sobs as she read me the results. I told her normally this would be good news to deliver to any patient but I was hoping for not normal. No way do I want a knee revision if I do not need one, no way at all. But what this means is I have traveled down another dead end road of diagnosis. My husband keeps saying, it is a slow process of elimination, but we will get there. Yes I hope there is a path to a diagnosis soon. But when you are the patient, and in a phenomenal amount of hourly pain and are flat out refusing to take anything stronger for pain than aspirin for so so so many reasons, you want answers. Living on pain killers, such as a narcotic, only masks the problem, it fixes nothing and solves nothing.
My quality of life is less than stellar right now. The pain is not in my head, though I sometimes feel like I have been treated that way by some, medical and others. It is very real. There is something still very wrong anatomically with my knee and it still all goes back to a fall I had in Salt Lake City in July of 2013, 4 years ago. Something happened, something is being missed. It is the same spot that has hurt since that fall four years ago. Likely I am the 1 in several million with a weird condition that will be challenging to diagnose.
I have been asking since the replacement for an arthroscopic look at the area. Soft tissue problems, as I keep saying over and over, is what this is, can be a challenge to diagnose. Add in having a knee replacement which eliminates getting an MRI which can be a good diagnostic tool for soft tissue problems, and you are left with not a lot of choices. The bone scan this week was helpful. It eliminated yet another diagnosis. But also leaves another dead end. I am working really hard at staying positive, but today is one of those days where tears are preferred and I am left scared and frustrated and still in pain without knowing what is wrong.
Part of the situation is when talking knee pain, 99% of the time involves the joint, which means its Orthopedic related. Orthopedics has ruled out just about anything in their area. Is it something neurological? Could be. But Neurology and Neurosurgery usually only deals with things directly connected to the brain or spinal column. Rheumatology has been ruled out. (Still not buying that 100%, but I will let it slide for now). Part of why it is ruled out is this involves 1 very acute joint. Yes I have other joint pain, bilaterally in some cases. But nothing is this acute. Podiatry says my foot drop on the right should not cause any problems with my knee, they are independent systems and unrelated. The foot drop isn't helping the situation but it isn't likely hurting it either. It really doesn't leave much direction to go it.
I meet with the orthopedic joint revision specialist next week. I am keeping that appointment even if that surgery is contra-indicated right now. As the nurse I spoke with today said, it is another set of eyes on the situation. Tria is a good organization. Very good. But I think Mayo will be getting a call rather soon. Please don't start sending me the "oh my ortho surgeon did a good job on me or my fired or cousin". Yes, they are all good or they wouldn't be practicing. I do not need another surgeon. I need a doctor who will stay with me to the end diagnosis and be my champion! Doesn't have to be a surgeon. I need a needle in a haystack doctor who will be patient and persistent. I am hoping there is such magical person at Mayo. I need a doctor who will perform an arthroscopic look inside the knee to see what is actually going on because I have run out of diagnostic tests.
Consequently I am laying down more than I would like, resting, taking any pressure off my knee that I can. Any movement is still likely to cause me to yelp, or worse, scream. I am unable to help around the house. In fact, there is little that I an do right now. I can craft, in small doses. Keeping my hands busy helps me, always. Therapy for the soul.
To answer what some might suggest, a mobility scooter. No. They all require bending my knee to an almost 90 degrees and can jostle you a bit. They would get me from point A to B but provide no relief from the pain, in fact, will add to it. I use a rollator, a walker with a seat. I sit when I need and have that seat raised pretty high so I do not need to bend my knee much. Right now, that is the best option. Plus, there is no budget or a mobility scooter right now. All money is being directed to any medical tests and doctors I need.
There are big decisions to be made in the next few days regarding our upcoming family vacation. No matter what the final answer, the decision will be a tough one for all the family. My daughter is in summer school with a schedule that may make it difficult for her to travel home. Right now I cannot manage a 2.5 hour, five hour round trip, car ride to go visit her. That makes my heart hurt because right now a visit with her would be just what this momma needs. Today is a challenging day. I am a strong person emotionally, a fighter, a warrior, but this fight is weakening me. I am not sure how much fight I have left in me, emotionally.
Thank you for reading this. Feel free to share your own journey on exceptional diagnosis's if you have one. With any luck in this life, you do not have your own story to tell. Yes, this will all go in a memory book some day. This is part of my story, and becomes part of my families story indirectly. It shapes who I am. I encourage people weekly, every Thursday, to document their own stories. Right now, a blog post will suffice for documentation for me. Eventually it will be printed and put in my book of me. For now, that is too emotional, and painful.
Thank you for your kind thoughts. I need them right now. ~Sandy
Read Previous updates:
Knee is not Normal
Knee update 2 post doc visit
As a regular follower of my site and friend, you know I have a lot of knee problems. Follow the links above to get up to speed if you are new to this site.
After last Thursday's trip to the Acute Injury Clinic at Tria Orthopedics, the doctor order a lot of blood tests and a bone scan. The bone scan being a nuclear medicine study of my knee using an injection of gamma rays to see if there is an uptake in radiation there which might indicate movement of the replacement joint at that site.
My tests came back normal, with one exception, one indications there is inflammation somewhere in my body. It could indicate that there is an infection at my replacement joint, which is something that has been debated for a while. No one has yet to draw fluid out of the joint directly and test for it. Sigh... And the X-ray shows some general swelling the the joint area, but not large pockets of fluid in the joint space.
I am happy that I am really, for all intents and purposes, healthy. Truly. Even with Celiac Disease and a few side issues, nothing effects me and my day to day quality of life more than joint pain, in particular, this Right knee. And of course, any onion I digest tends to cause some immediate and rather bothersome digestive issues.
The doctor I saw last week is gone on vacation all week so I had to call, rather than get the test results through My Chart.
The nurse was happy to give me my results. Truly, she was bubble and excited for me when she called back. She called to tell me my bone scan was normal. That means that the scan indicated the radioactive uptake was normal following a joint replacement and that indicates that there is no movement of the joint on top of the tibial plateau as had been thought, or possibly indicated on plain film X-ray.
I apologized to her for my deep intake of breath and a few sobs as she read me the results. I told her normally this would be good news to deliver to any patient but I was hoping for not normal. No way do I want a knee revision if I do not need one, no way at all. But what this means is I have traveled down another dead end road of diagnosis. My husband keeps saying, it is a slow process of elimination, but we will get there. Yes I hope there is a path to a diagnosis soon. But when you are the patient, and in a phenomenal amount of hourly pain and are flat out refusing to take anything stronger for pain than aspirin for so so so many reasons, you want answers. Living on pain killers, such as a narcotic, only masks the problem, it fixes nothing and solves nothing.
My quality of life is less than stellar right now. The pain is not in my head, though I sometimes feel like I have been treated that way by some, medical and others. It is very real. There is something still very wrong anatomically with my knee and it still all goes back to a fall I had in Salt Lake City in July of 2013, 4 years ago. Something happened, something is being missed. It is the same spot that has hurt since that fall four years ago. Likely I am the 1 in several million with a weird condition that will be challenging to diagnose.
I have been asking since the replacement for an arthroscopic look at the area. Soft tissue problems, as I keep saying over and over, is what this is, can be a challenge to diagnose. Add in having a knee replacement which eliminates getting an MRI which can be a good diagnostic tool for soft tissue problems, and you are left with not a lot of choices. The bone scan this week was helpful. It eliminated yet another diagnosis. But also leaves another dead end. I am working really hard at staying positive, but today is one of those days where tears are preferred and I am left scared and frustrated and still in pain without knowing what is wrong.
Part of the situation is when talking knee pain, 99% of the time involves the joint, which means its Orthopedic related. Orthopedics has ruled out just about anything in their area. Is it something neurological? Could be. But Neurology and Neurosurgery usually only deals with things directly connected to the brain or spinal column. Rheumatology has been ruled out. (Still not buying that 100%, but I will let it slide for now). Part of why it is ruled out is this involves 1 very acute joint. Yes I have other joint pain, bilaterally in some cases. But nothing is this acute. Podiatry says my foot drop on the right should not cause any problems with my knee, they are independent systems and unrelated. The foot drop isn't helping the situation but it isn't likely hurting it either. It really doesn't leave much direction to go it.
I meet with the orthopedic joint revision specialist next week. I am keeping that appointment even if that surgery is contra-indicated right now. As the nurse I spoke with today said, it is another set of eyes on the situation. Tria is a good organization. Very good. But I think Mayo will be getting a call rather soon. Please don't start sending me the "oh my ortho surgeon did a good job on me or my fired or cousin". Yes, they are all good or they wouldn't be practicing. I do not need another surgeon. I need a doctor who will stay with me to the end diagnosis and be my champion! Doesn't have to be a surgeon. I need a needle in a haystack doctor who will be patient and persistent. I am hoping there is such magical person at Mayo. I need a doctor who will perform an arthroscopic look inside the knee to see what is actually going on because I have run out of diagnostic tests.
Consequently I am laying down more than I would like, resting, taking any pressure off my knee that I can. Any movement is still likely to cause me to yelp, or worse, scream. I am unable to help around the house. In fact, there is little that I an do right now. I can craft, in small doses. Keeping my hands busy helps me, always. Therapy for the soul.
To answer what some might suggest, a mobility scooter. No. They all require bending my knee to an almost 90 degrees and can jostle you a bit. They would get me from point A to B but provide no relief from the pain, in fact, will add to it. I use a rollator, a walker with a seat. I sit when I need and have that seat raised pretty high so I do not need to bend my knee much. Right now, that is the best option. Plus, there is no budget or a mobility scooter right now. All money is being directed to any medical tests and doctors I need.
There are big decisions to be made in the next few days regarding our upcoming family vacation. No matter what the final answer, the decision will be a tough one for all the family. My daughter is in summer school with a schedule that may make it difficult for her to travel home. Right now I cannot manage a 2.5 hour, five hour round trip, car ride to go visit her. That makes my heart hurt because right now a visit with her would be just what this momma needs. Today is a challenging day. I am a strong person emotionally, a fighter, a warrior, but this fight is weakening me. I am not sure how much fight I have left in me, emotionally.
Thank you for reading this. Feel free to share your own journey on exceptional diagnosis's if you have one. With any luck in this life, you do not have your own story to tell. Yes, this will all go in a memory book some day. This is part of my story, and becomes part of my families story indirectly. It shapes who I am. I encourage people weekly, every Thursday, to document their own stories. Right now, a blog post will suffice for documentation for me. Eventually it will be printed and put in my book of me. For now, that is too emotional, and painful.
Thank you for your kind thoughts. I need them right now. ~Sandy
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