Need Help -severe Osteoporosis &need for TKR

Good evening @marycb. Welcome to Connect. Our mission is to help everyone improve their quality of life and we do that by sharing our experiences with medical conditions. You have asked a question I have never seen before. If I understand you correctly, you are being denied a TKR because of your level of osteoporosis. Before I jumped off into the unknown would you please tell me what your last bone density T score was for your
hips? Have you been taking medication for your osteoporosis?

The reason I am asking is that I just had a TKR last August and I had been taking daily injections of Tymlos for two years. This was reported in my patient portal so my orthopedic team could find it easily. No one said a thing.

What has been said about the reason that your osteoporosis is of a nature that excludes you from a TKR? I don't blame you for being at your
wit's end. I understand your desire to seek confirmation from Mayo Clinic. Have been a patient there before?

I will wait for your response so I can give you the best answers............
May you be free of suffering and the causes of suffering.
Chris

Good Evening. My T score for my Right Hip was -2.8; for my Left Hip it was
-2.0, and the Mean Hip Score was -2.4. The only medication I have been
given is a bi-yearly shot of Prolia given to me by a Rheumatologist that my
Gynecologist sent me to two years ago because of her concern that I had
fractured too many bones in the time she had been seeing me and felt that
someone should be concerned about why this was happening. I did not even
understand what my numbers were, or how bad things.were until I actually
got to see my report online this year. I have a PDF of the report if that
would help.

Let me give you some background: First of all I live in a small coastal
area in the mid-Atlantic where healthcare is less than desirable. There is
one hospital that serves the state I live in, and a smaller hospital that
is more convenient for me to use, that is located 20 miles into the
neighboring state. When I moved here I was just recovering from a very
grueling two years that started with a simple TKR in March 2014 and ended
in June 2015 with the removal of a concrete spacer put in in April 2015,
and a new TKR put in, with what little bone was left in my right leg due to
the infection. Without the Infectious Diseases Specialist at the hospital
in Virginia, I would have lost my leg. The infection resulted from the
need for the surgeon to replace the patella, which after two
consultations, was determined to have "patellar clunk," and I was referred
back to my original surgeon who reluctantly agreed to fix it in late
January. at which point the infection set in viciously. Ultimately, I
was left with chronic kidney disease and chronic potassium deficiency for
which I take bi-weekly blood tests to ensure my levels are within range.
About four years after moving here I began to experience falls - I broke
my ankle when I fell over a table leg; next was a fall where I broke my
left metatarsal and four months after that, while putting off my scarf in
the Infusion Unit, I fell backwards as my crutches gave way and hit the
floor and broke my pelvis. The final fall was in May 2019 when I fell in
my closet and managed to screw my right ankle up with a bimalleolar
fracture. At that point, my orthopedist ordered me into a wheelchair for
my own safety and told me to try water therapy. After six months, I was
referred to a Advanced Orthopedics in the Baltimore Maryland area who has
put me thru the ringer with requirement after requirement, such as can I
walk 100 feet (no, I've been in a wheelchair for six months) (I requested
physical rehab from my local orthopedist after that meeting and can now
walk 240 feet); have I seen a vein specialist (they were to provide the
vein specialist and did not so I now have an appoint with a local one) and,
after a discussion with one of the doctor's staff doctor's, the Baltimore
physician decided I should not have come expecting to be scheduled for
surgery when I only went to the appointment (4.5 hours from my home) as a
follow up to the last appointment, as required by the doctor..

I believe that my local doctor does not want to deal with me because he
does not want the chance of a bad outcome on his record - the hospital he
works at is a 62 bed hospital with an ICU, but no onsite Infectious
Diseases staff. Additionally, I believe he does not like my overall health
profile (I have serious digestive problems that are managed by a doctor in
Virginia; minor heart issues that are also managed; I am obese but as of
this afternoon, my nutritionist weighed me and I have yet again lost
several pounds and have continued to stay under 200 pounds moving towards
190 rapidly; and of course, the osteoporosis). He also, somehow, made an
odd comment to me about not worrying about getting taken care of because
"we (my husband and I) have the money". This was very surprising news to
me and my husband. And very insulting. He has told me to accept that I
will be in a wheelchair for the rest of my life (NOT IF I CAN HELP IT) and
accept it. When I was in his office a few week's ago for a new issue, as I
was leaving I told him that I was going to see the Baltimore surgeon in a
few week's and that I expected him to dismiss me as a surgical patient, and
he immediately spoke up and said yes, he expected that too.

I feel at a loss and out on a limb because my husband agrees with the local
orthopedist. I cannot believe that my knee cannot be replaced. It is
buckling on me regularly. In August, getting out of the shower, it buckled
and my lower legs hit the edges of the rails that the shower doors run on.
I am still in Wound Care for that fall. Then, to everyone's disbelief, on
Christmas Day, the same thing happened and I have additional wounds I am in
Wound Care for.

I apologize for the long and winding tale but as mentioned, I am at my wits
end. I do not know where or who to turn to. I am trapped in my home,
unable to drive because my husband refuses to allow me to, unable to get
into my girlfriend's homes because the homes in our development have two
very steep steps and another one to get over the thresholds of the houses.

I would be very appreciate of any wisdom you can impart to me even if it
means I have to stay in the wheel chair for life. Thank you for responding
to me, Maryrose Cline-Buso

Oh my oh my, I cannot believe what you have been through. If I didn't have my own issues I would be on the next plane to visit you even if all I could do was hold your hand. And just to get on with the introductions, I lived in Delaware for 15 years. I know the mid-Atlantic a bit and yet I have never been aware of anything like your story. I lived in Bethel, population 250, and then in Milford, population a few more. And I just remembered, the surgeon for my first spine surgery lost his certification because he did a lot less than was necessary. I was only 28 years old and had to find another surgeon to do a laminectomy. It sure sounds like we have been down some of the same roads.

Let's start with what really might be the best thing for you and that is becoming a patient at either Mayo Clinic or another educational facility like Mayo. Just so you know I am also familiar with the knee-buckling. Last August I had my second TKR. It was a Mako Robotic and my patella is fine. I don't know how old you are but I just celebrated "80" and have had at least 14 orthopedic surgeries.

Congratulations on your weight loss. That will help you immensely. As I am sure you are aware, when our activity level reduces, then we must eat less. And it is good to work with a nutritionist. I am struggling with Small Fiber Neuropathy and am looking at a second shoulder surgery so I have to be very careful. I can do some senior stretch yoga which helps me keep on my feet and will be beginning my daily walking as soon as it stops snowing here in MN.

So....here is something else that works for me. Mindfulness. I practice mindful meditation every day. It makes my commitment to finding joy in every day more achievable. Do you have a social group that you enjoy? Grandchildren? Family? If you could have a memorable day what would it be like?

Let's focus for a moment on Prolia. For one thing, Prolia does not build new bone. It protects the bone you can build from reabsorption. There are three Bone Builder medications and one that does both.....builds bone and protects it. You can learn a lot just by using the search field at the top of this page. Just enter Tymlos or Forteo or Evenity and press the search glass at the end. Evenity is the one that builds new bone and protects it. Evenity is made by the same company as Prolia and that is Amgen. If you would like to talk to one of their medical staff about your situation, you can reach them at 800 772-6436. I think the number you then press is 2. So....do some homework., read some of the other member's posts, and then you will be ready to make a decision with your doctor. And before I forget to mention this.......I seek doctors who practice shared decision-making with their patients.

Sleep well. And know that you will be in my thoughts.
What will you be thinking about?

May you be free of suffering and the causes of suffering.
Chris

I'm a 67 year old femals who needs a knee replacement but has been set aside by her local doctor in a non-urban area, due to my severe osteoperosis as well as what I believe to be his discomfort with several risk factors: I am overweight; had a knee replacement in 14-5 that was a disaster and left me with a staph infection for five months; and kidney failure and the inability to retain potassium. My digestive system does not work well (since my early 20s) and I have mild asthma. Does anyone know if there are doctors out there that would help me?

Hi @marycb, you will see that I moved your most recent post to the conversation you started before that's on the same subject. We do this so that you can keep up with all like discussions in one place. I would also like to invite @kmart to the discussion since they had questions about this as well.
You can see their post here: Knee replacement/osteoporosis: https://connect.mayoclinic.org/discussion/knee-replacement-osteoporosis/

Questions to ask your doctor before knee replacement: https://medlineplus.gov/ency/patientinstructions/000665.htm --------- Total Joint Replacement: Questions Patients Should Ask Their Surgeon: https://orthoinfo.aaos.org/en/treatment/total-joint-replacement-questions-patients-should-ask-their-surgeon

Mary, have you considered reaching out to Mayo Clinic for a second opinion?

Hi, @Amandaburnett, thanks you for consolidating my two discussions. Hopefullly I will get some type of answer from someone. I have information on patient instructions and qustions to ask your surgeon, as I've alrady had a disasterous knee replaement followed by five more surgeries. I am thinking of reaching out to Mayo for an opinion on my left knee as, while I accept that it might not work, and the wheelchair my local ortho, I keep thinking he was sick of dealing with me. The doctor he sent me to in Baltimore, who he touted as really good - he's an Advanced Orthopedist - is not even listed in Baltimore Magazine's as a Top Doctor (not that all have to be put I prefer well mine to make a showing from time to time). My problem with Mayo is that my husband has a blood cancer he is being treated for here at home and at Johns Hopkins. Coming to Jacksonville might be difficult for me, so being able to talk to somone who had TKR and suffers from multiple risk factors including severe osteoperosis, or an initial discussion with a doctor who might tell me if coming to Florida is worthwhile or not would ease my mind and help me make an appointment. THANK YOU FOR YOUR HELP.