Building bone before massive spinal surgery

@nliebrecht Thank you and blessings for a stable healing . 💛 It sounds like we are in the same boat with adult onset scoliosis, fractures, and spinal deterioration. I agree with the recommendation of taking Evenity for 6 months to stabilize bone before surgery, but the surgeon said he does surgery and beginning a bone building drug “side by side”. I do not know what to think, but that sounds so risky, and am going for more opinions in the meantime.

Are you taking Evenity? If so, would you share the side effects you had to put up with? I am terrified, but started prep today re, beginning Evenity, by seeing my dentist for a thorough exam. I rarely get cavities and today 3 were found plus the need for 2 crowns. Unbelievable. Thank you again for your response, I will be sending you healing light and thoughts for ease. ✨💛✨

Part B will pay for reclast infusions and prolia injections. I tried the reclast and the body aches, muscle and joint, were unbearable, also ran a fever. I have a low immune system, have had Sepsis 14 times. I ended up having a sepsis infection afterwards. I then switched to prolia and have been getting an injection every 6 months. It's built my bone mass by 8 - 11%, depending on the location. Now my Dr wants to put me on the new drug Jubbonti that is similar to prolia.
I've had osteopenia for 23 years. 4 years ago, following a sepsis infection, bacteria migrated to my back, giving me osteomyelitis, discitis and burst fractures in T9 & T10 vertebrae, compressing my spinal cord. I knew at the time I'd need further surgery but they wanted to put it off as long as possible. The rods in my back are protruding significantly on the top and bottom. Several screws and broken and several others have backed out. I've had worsening kyphosis, progressing all of the time. Now my neck hurts trying to look up all of the time. I think surgery is now just around the corner and the odds are high. Like you, I'm terrified. I know they'll want to do some bone grafting because further hardware isn't likely going to hold. I've lost 3" in height. I bet you've just significant loss too. I wasn't tall to begin with; I'm now 4'10! I see the surgeon December 29th

I’m sorry to hear of the nightmare you are experiencing.
This is indeed terrifying. I am, at the moment, trying to face my personal situation with courage, still to be found. I am trying to learn about the journey on Evenity right now, step by step, without looking to the future that may hold deep scary places in the dark side,which I am too easily prone to do. Take care of yourself, and especially try to tend your spirit. 🦋❤️‍🩹🦋

This is all so scary and most of us are in the same boat. Do you trust your medical staff? That is the key to moving forward. If you trust them, follow what they say to the best of your ability. Believe in you heart that they have your very best interest at heart. Cast your cares upon the Lord and seek Him to provide you with wise counselors that are only going to provide the best direction for the best outcome. Take a deep breath and believe that you are on the road to recovery. What you tell yourself about this process is as important as any tangible thing that is done to you or for you. Wishing you the very best! k

Thank you for your support, K. ✨💛✨
M~

@margaretisabel I am way overdue with a response. I was in the hospital recovering from spine surgery when I got your message. I meant to respond sooner, but just neglected to do so. This was life altering surgery, and frankly, in the aftermath, I have become more of a procrastinator than I was previously.

It does indeed sound like you are going through similar, if not exactly, the same issues that I faced. I took Evenity for 6 months, and while the drug worked, I experienced one particular side effect that caused me to quit the injections after six months. This is a drug that has only been in use for a little over 5 years, and it may be that, despite the usual trials for new drugs, not all of its side effects are known. In my case, I experienced increased blood pressure that at times was difficult to control. The nurse practitioner heading up the bone health clinic where I went, was surprised about my blood pressure issues since in trials, cardiovascular problems only occurred in 1% of the people getting Evenity shots. As a result of my experience, patients getting Evenity at this clinic will now be advised to regularly monitor their blood pressure. I was, however, able by taking medication to keep my Blood pressure reasonably stable and finish 6 months of the medication.

Given the possibility of side effects from Evenity, I so not think that it is prudent to take this medication while undergoing and recovering from surgery. I consulted four back specialists at four major medical institutions, and not one of them recommended doing this. It may be that given how long it has taken me to respond, you may have already had surgery. If not, I strongly suggest getting several opinions before deciding on a surgeon. As mentioned, I consulted four back specialists who each recommended different approaches to doing my surgery. I selected to the one whose recommendation made the most sense to me and whose personality was also compatible with mine. Surgeons can be dictatorial, and Dr. Daubert was amenable to doing things in a way that suited me. This was most important during my recovery.

Back surgery is a big deal, and surgeons and other medical consultants will push you to go into rehabilitation after surgery. For a number of reasons, I did not want to do this. I went into the surgery in excellent physical condition. A 2 to 3 week stay in a rehab facility would likely have resulted in a physical decline rather than improvement. Indeed, I found physical therapy in the hospital and afterwards from home health to be nearly useless when it came to maintaining and rebuilding strength after the surgery. I am 79, and I found that many therapists have preconceived ideas about what a lady my age can do. Dr. Daubert, my surgeon, was amenable to what worked best for me.

If you have not had surgery yet, the best advice that I can offer is to get three or four medical opinions from good back surgeons. If possible, talk to people who have actually had surgery from these doctors.

One note about tooth problems. Osteoporosis medicines can indeed affect your teeth, and I have a new crown myself. I attribute this to problems caused by a filling that I got in 1955. After decades old fillings just cause problems. In my case, I do not think that Evenity was the cause of needing a crown,

I am now just over three months from my surgery. I am walking 2 miles every other day without pain. I have lost flexibility in my spine, but I can pretty much do everything that I need to do--even tie my shoes. The pain from this surgery was excruciating, and I never hope to experience anything like that again. That said, this was something that I needed to do and I have no regrets.

If you have any questions, please do not hesitate to write. I will be more diligent about responding in a timely way.