@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?

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

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?

I am very sorry to read you have and are going through this, but I thank you for posting. It clarifies a lot for me. I too have severe scoliosis, roto scoliosis, stenosis, spondylosis and every other dang thing with an S,, About 4 or 5 years ago I started seeing and consulting with different orthopedics,, all wanted to do the extensive surgery with rods, poles, a cage, nuts and bolts, none guaranteed relief of the lower back pain I had and at that time I was not as savvy about dissecting my MRI's as I have been the last many years. I opted to not have the surgery , it was good I didn't like either of the ortho's.. and the thought of a 12 hour surgery , 6 months to recover, when I own and operate a Store full time and am alone... At some point last year the pain in my lower back was so severe as well as the sciatica o=down my right butt and thigh I couldnlt take it, I went to see the same Neurosurgeon who had done my neck in 2020 . New MRI and herniated bulging disks and a lot of arthritis L1 to S1.. I told this Dr, to do the least invasive surgery to get me out of pain, He even said it was not the scoliosis causing me the pain YET... I did it.. 2.5 hour surgery , ended up staying in hospital 3 days longer than expected,, he did a laminectomy of 3,4,5 and removed a baseball size chunk of arthritis off of my spine which he said would give me great relief. Which all of it did.. I felt good for quite a few months,, I bought a rowing machine with his approval 6 months after ( I think that was my demise). 5 days after the surgery was walking on my treadmill and going to the store ( my brother driving). Here it is a year later and my pain is back,. some days so severe with the sciatica I had no relief,, I quit the rowing machine . and started getting medical massages by a lic, medical therapist,,, I have been better,, but I did get a new MRI during the throes of my worst pain,. of course the scoliosis was worse , rotating more.. and so were my disks,, his answer on the phone was I had a lot more arthritis and "looks like we will have to keep going up".. I see him after the first to discuss surgery again... After my babbling here, I look back on my back journey and how quickly all these Ortho Drs were to want to do surgery asap for my scoliosis which is NOT the cause of my pain,,. With scoliosis if it keeps moving and rotating to the point it affects the organs that is when you must address it,, I am not there yet and I don't think your family member was either , not at that age,,, I am at the point though where as ny spine moves it moves the organs as well, so my organs are not where they are supposed to be. My thoughts are that no one wants to touh someone elses mess,.. y mother had that problem and no Dr where we live woukd do another surgery on her,, she ignored them and went to some Shlock in El Paso whio halfway through comes out and tells my dad , he ran out of time.. would have to finish another time????? they go back , he says nothing more I can do for you. My mother is lazy and never does any of her PT..... so now she is pretty much in a wheel chair and a huge Burden to me as I get it all dumped on me so My Dad doesn't have to deal with all the BS.. I am 62, a stage 4 terminal cancer survivor not living my best life,,,, I do not ever do the pity party but I keep saving every one but me,,,I tried to get into Mayo as well, and I used my useless brothers address in Scottsdale as a resident, I was told a year wait,,, now If Idropped on their door step like my younger brother did they would have to take me,..... tis a thought,,,,, and he is on Medicaide!!!but he had a months stay there , they took care of everything and it was free,,,, I have good insurance,,, Mayo Clinic had a founding policy they turned no one away,,,, I nay go up to Albuquerque which is 3 hours north of where i am closer to the border, and yes they get free medical when they get here...meaning illegals that come over unprocessed or processed i don't know.... The medical here is sub standard at best and the mere fact I am still alive is because I saved myself as well as both parents.... who Drs dismiss and I literally must tell them what they need... I donet know where to go where yu would find Drs who give a hoot,..., I had my first Oncologist I was clearly dying in front of him....begiing him o=for chemo as I thought surely that would save me,,,,,, he did nothing.., Took me awhile but I was on a mission,,,, I got his his licence permanently taken away,,,, I ruined his life as he did mine,,,, I didnt want his money although I could have used it,, Mr Hot SHot Attorney approached me because I had a slam dunk case, even the Medical head of the board said I had the worst case of malpractice,, Anyhoo,,, Please find a good Neurosurgeon and a recent MRI and dissect the entire thing,,, ask the questions I try to give you Please keep in touch , I truly am interested and feel there is hope... Merry Christmas from my heatting pad to yours, Jacquie

My heart goes out to you because I know some of the feelings you are going through. I had full scoliosis surgery three months ago. My spine is fused from T2 to my tailbone and in my pelvis so I'm doing good, still have some pain and go to therapy twice a week for twelve weeks. I had part of my jawbone on the inside of mouth removed but it doesn't show on the outside it was caused by taking Prolia injections, before my surgery I had injections in my back too they didn't work I had a pain stimulator put in my back that didn't help much either, so T got a hump in my back and stooped over to one side none of my clothes fit right. I watched my mother go through this, she wanted to have something done but it was too late for her, she waited too long, and I did not want to follow her, bless her heart. The problem with her, my sister, and I is we have degenerative disc disease .

@gramham are you seeing a pain doctor for adequate pain control? She are you located?