Severe scoliosis

@tmtm4 Hello again. I had been chatting with you in your other post about dental issues. I am a Mayo spine surgery patient, and also had surgery there for a broken ankle. Anything affecting mobility is a tough recovery and has been my challenge the last couple years. Am I understanding correctly that you have had one spine surgery but also have multiple problems with damaged discs and scoliosis with RA and osteoporosis?

When I was getting second, third, etc. opinions about my spine, I was choosing surgeons at different medical facilities. Sometimes, a surgeon in the same medical center as your last doctor, doesn't want to challenge their opinion particularly if the first surgeon is a department head or in a supervisory role. They do have a degree of common ground in their opinions about your condition. I understand that you are retired and finances are a concern. Are you at this time considering surgeries for both your spine and dental issues? Either one of those would be a lot by itself. Is one of those problems more urgent than the other?

Have you asked your provider if Orencia should be discontinued? I understand it is a medication for Rheumatoid Arthritis. It would be worth asking if stopping this medication would have negative side effects for your present condition. Are you being treated for Osteoporosis?

What are your goals now with respect to your medical conditions? You had mentioned possible spine surgery that would include rods to strengthen the spine. One other factor that affects what spine procedures are possible is osteoporosis because you need to have good enough bone quality if spinal hardware needs to be attached with screws or those screws may pull out or break from pressure. Surgeons need to try to balance the spine so it can support the body weight even if that means a loss of spinal movement. It is a question of what is a better choice between a rigid spine, or the body held in a position that adversely affects function. My mom has severe osteoporosis and had a spine compression fracture because of it. She didn't qualify for a procedure with bone cement to glue the vertebrae back together because of the osteoporosis and was instead given a back brace during the healing phase. Would a back brace be an option for you?

I am sure these are difficult decisions. Is there something holding you back in the decision process? What is it that worries you the most? Do you need assistance at home for daily living? Have your doctors recommended what should take priority for treatment? What can I do to help ease your mind?

Thank you I am concerned with my teeth. I have lost all but 4 on top, (4 or 5 in the last two years,) but only two on my lower arch. So many different opinions with major financial implications. I know I need to get up and move but I don't. My body is a piece of junk that never heals right or just when I think things might be looking up, something else happens. It's too much.

Hey there! My name is Denise, I am 46 years old, and I was recently diagnosed with severe scoliosis. They want to do several surgeries on my back to basically reconstruct my spine. When I was younger I was diagnosed with slight scoliosis by my nurse in elementary school. So my parents never followed through with it and I had no idea that the back pain I have suffered through was even related to that. However, after having a severe bowel obstruction which left me in the hospital for 3 weeks they had to do a CAT scan to make sure everything was okay. Well because of this that's how they discovered it because they could see through to my back and my spine. I have to be honest, the reason I'm writing any of this is because I am absolutely terrified!! I mean I have to get rods in my back and they have to take out several of my discs which are severely degenerative and to top that off if I don't get the surgery, there is a chance that I could become paralyzed. The last disc is basically becoming unattached to my spine. I can't even talk about this without becoming extremely emotional. Has anyone going through anything like this to get over me any advice? I'd really appreciate it, thank you!

Hi there, Denise!
My heart goes out to you. I’m a teen who had scoliosis surgery about a year ago and I was really scared even though I only had to have 1 surgery and didn’t need to have any reconstruction done / discs removed. I’m so sorry that you are going through all this, and I will definitely pray for you, both for your spine and for your peace of mind in the meantime!! Jesus and Mary are watching over you, and God’s going to work everything for your good. Rest assured He won’t leave you alone; He took excellent care of me.
Some life hacks: you should get someone to take care of you at home during your recovery, and you may want to consider getting some bed rails for your bed; try not to rely on them for too long, but they did come in handy for me early on and helped me become independent sooner. Also, listen to your body and follow doctor’s orders on this, but the main thing that helped me was exercising as much as possible. Walking did hurt on the first day, but it was still bearable, and after that, I think it was actually the best tool I had for pain control.
Prayers and hugs!

Hi Denise

I had a 2 level TLIF (L4-L5-S1) on 4/28 to help correct degenerative scoliosis. I’m 64. My back pain goes back many years . My disks were lying in the curve all crooked hitting nerves. Choose your surgeon carefully. Mayo has been great.

I’m one year post surgery. I’m fused from T4 to S1 with some discs removed/replaced and two rods. My surgery was done over two days, one through the abdomen and the next day through the back.

You will want Help at home, walk as much as possible, and definitely follow Dr orders.

Make sure you have some grabbers to help you pick things up, get a shower chair, and a tushy (Google it. Easily attaches to the toilet and helps when you’re not supposed to bend or twist).

I’m 58, still feel like a spine patient, but each day gets better. I remember how scared I was and emotional. Expect some days of frustration, but the body has an amazing ability to adapt and heal.

Good luck.

Hi
Has anyone heard about carbon fibre instead of the titanium bar being used to straighten your scoliosis? This procedure is not done in Canada, but heard is was done in the US & ? Does anyone have real info about the carbon fibre
Need surgery, would like to consider the carbon fibre.

RL

Hi Denise,

I recently had spine fusion for my scoliosis. My surgery was done over two days as my curves were larger than most and I also needed a vertebrae removed. Make sure you find a doctor you feel comfortable with. If you go to Mayo, they do a really good job matching your case with the best doctor. I'm currently in week 6 post-op. The first month is not fun, but as my doctor told me if I didn't get surgery It would definitely shorten my life span. This was because it affects the location and function of the other organs. Start with finding a good surgeon and discuss the pros and cons. It can be scary. You'd be crazy if you weren't a bit scared. If you do get surgery, make sure you can be in a place where you can have help with your daily needs. Definitely want to make sure this is fully arranged before hand. If you have any questions feel free to ask. Hope for the best on your journey! You're not alone!

I’m trying to gain more insight into this condition. I have a family member who has very severe scoliosis. She had rods inserted years ago when she was in her 30’s. She’s now in late 50’s. I’m not sure what happened, but she is now in very bad shape. Her curve is more severe than anything I’ve ever seen, even on line photos. She is now at least a foot shorter in height. It appears she has a book bag underneath her shirt. She is in terrible pain. It breaks my heart and I just don’t know how to help. She has consulted with some of the top neurosurgeons in our state. They all recommended surgery, but I’m not sure if that is an option any longer. i’m trying to convince her to try Mayo Clinic. She’s afraid of another surgery, which I understand. What are we to expect?

No, she is not alone.
In 2008, I, too, had a 2-day surgery, at age 58. Before the surgery, my spine surgeon just wanted to “keep an eye on it;” however, in one year, my curve progressed 11 degrees! At that time, the surgeon said it was time - finally.
Since that time, I’ve had six revision surgeries. Now, I have constant low-back pain - in fact, it’s never gone away, actually. My only relief is when I sit or lie down, but I really don’t want to spend the rest of my life, sitting or lying down!
Mayo declined to see me, which was disappointing, to say the least. Their declination letter said they have no treatment options for me. I suppose all my documentation they received kind of scared them away.
I do, however, have an appointment with the Cleveland Clinic, which is quite far away from my home. To be honest, I feel they just might say the same thing, so am thinking of canceling the appointment. I just might be wasting my time and theirs.