T4 - Pelvic Surgery Suggested...

[Robbi1464]

Hi Everyone,

I am new to the forum. I think I've searched every resource on the internet that I can find about my curves. I was diagnosed with scoliosis when I was 12 years old. My sister found it when she was trying to get me to do a back-flip and I kept twisting out of it. She looked at my back and told my Mom that something was wrong.. then the long 4 years till I was 16 of wearing the Milwaukee Brace occurred. It's an emotional thing as I think all of us can relate to. Going to school and looking different.. Junior High was brutal to me. I had to wear my brace 23 hours a day only to take it off for gym class and showering. I cheated though to take it off to ride horses. Anyway, years have gone by now and like so many of us in our later years the curves start to hurt or the degrees get bad enough that we have to do something about them. I was told last week that my curves are 63 T and 50 L. That I will need Posterior and Anterior surgery with spinal fusion T4 to pelvic. My husband and I have built a life around our ranch and ride horses for pleasure. I'm not a wahoo riding. We walk mostly. I have been so saddened by the advise that I would never be able to ride again. I have scheduled an second opinion at the Baylor Scoliosis Center in Plano TX at the end of this month. I don't have much pain except in the lower lumbar area that keeps me up at night. I would love to hear from others that have had this long of a fusion and what their life has been like 12 months out after it. I'm feeling emotions of being scared, depressed.. you name it. <3

52 year old female
Milwaukee Brace - 12 years to 16 years - T 35 L 32

2016 T63 L 50
Suggested surgery T4 - Pelvic

[jackieg412]

Yes go for that second opinion. I don't know if you would be able to ride but many people go back to everything after healing. Also check how long you can postpone the surgery. You mentioned you weren't in a lot of pain so maybe you can wait. I wish I had waited. Even with significant pain I wish I had waited.

[Robbi1464]

What happened that you fractured so quickly after surgery?

[titaniumed]

Robbi,

We have been sitting around the table here for many years wondering where everybody is? Glad you you could sit down with us. Your testimonial is familiar...

I guess I will start with the horse statement and yes, that surgeon was preparing your expectations just in case you cant ride. I have attached a photo below of me getting ready to ride in the Colombian mountains a few years back. I must say it went quite smooth. I rode for 4 hours and all the others (non-scolis) were complaining of back pain except me. I guess being fused to the pelvis is a good thing.

At 12 months, I was 90% healed. It took another year to say I was completely healed, so 2 years. The 2nd year is the fine tuning year, all the soft tissues have to be re-built again and it takes a long time.

I would say the simple way to figure healing rates in a 50 year old adult would be to figure 10% per month.....The first few weeks are pretty much a survival mode where you spend every single minute trying to get comfortable. Getting comfortable after surgery is hard, and sleep is difficult. Sitting down is generally limited to 2 minutes for the first month, but it does get better with time.

I did contact Dr Shelokov many years ago before I met my current surgeon. I had a massive ALIF done, and it worked well. It was extremely serious surgery but it worked out well considering the complexity. It will be good for you to visit Baylor for a 2nd opinion.

Ask any questions you wish, you can also PM anyone here if you wish to e-mail or chat on the phone...

Welcome to the forum

Ed

[JenniferG]

Hi Robbi, My single thoracic curve was 68 degrees when I had T4 - Sacrum surgery with iliac bolts. I was almost 58. That was 7.5 years ago. I have had no pain since, for which I'll be forever grateful. I am able to do anything I want, though my surgeon told me not to run as it was too jarring on the few unfused vertebra above my fusion. I am quite sure I could ride a horse, especially if it was just walking, though I haven't done so.

I am left with a 22 degree curve, which is unnoticeable to the untrained eye. All my clothes fit just fine apart from one shoulder being slightly lower than the other, and necklines tend to drop away to that side a little.

Surgery was the best thing I ever did. Drop me a message if I can answer any questions for you! I hope the second opinion is more help.

[jackieg412]

Robbie I think you asked why I fractured so soon in the thoracic spine. I reached for a tissue. And the vertebrae above the fusion fractured. I do not have osteoporosis so the best reason I can guess at is I was still real strong and the muscles pulled. The second guess would be that the spine should have been fused up to T2 during the first surgery. My SPINE was first fused to t10 and quite apparent it was not a stable vertebrae. So while my spine team wanted to be conservative, it wasn't the best decision. After the fracture, I had the rest fused a few years later. I went rapidly into hyper kyphosis. Feel free to ask any questions.

[LindaRacine]

Ed...

Shelokov is deceased. He died about 6-7 years ago I think.

--Linda

[titaniumed]

Yes.... Downhill mountain biking at Telluride. I skied there in 1981. Its an extremely scenic area of Colorado.

Downhill mountain biking is probably THE hardest upper body workout I have ever experienced.....

Its such a shame....and he was around 51, I believe.

I have decided not to push as hard anymore.....No more extreme workouts for me.

He was good surgeon...

Ed

[Robbi1464]

Thank you everyone for your hope and encouragement. Ed, your photo brought tears to my eyes.... very emotional ones. Was it hard to get off the horse? Or did you just swing your leg over? I want to also thank you guys for giving me the truths of all this and the expectations that I should have, if any.... Dr. Richard Hostin is the physician at Baylor that I will be seeing. Has anyone heard of him? Dr. Weinecke here in Oklahoma is well known for his abilities and comes highly recommended, but I just want to make sure.. Is there a preference to what type of physician does the surgery? Neurologist vs. Othropedic Surgeon?

There was one thing I remember from being a young girl of 12 and being first diagnosed. I kept dreaming about the DNA helix.. every time I closed my eyes to go to sleep that figure appeared and I really at that time had no idea what it was.. I know that sounds so strange but after all these years now facing these fears again.. that's what I remember from the beginning of this journey.

Jennifer thank you for sharing your story... I'm hearing more hopeful stories.. and Jackie I hope that you are okay now.. I sneeze pretty hard too...<3


God Bless <3

[mistybowe]

Is there a preference to what type of physician does the surgery? Neurologist vs. Othropedic Surgeon? <3

Good morning,

I had an orthopedic surgeon perform my surgery, but a neurologist was there for the entire surgery as well monitoring my spinal cord function.

I understand completely how you feel about potentially being limited in future activities and giving up something you love. I was a runner pre-surgery and miss it every single day and still get emotional looking at my race medals or even another runner on the road. The way I look at it, I'd rather live a full, happy, less painful life and NOT run than to continue running and be in pain. It's hard to trade something you love... but in the end, do we have a choice? I'm obviously still working through this change in my head and I'm sure you will do the same. Ed always speaks of being patient and letting yourself heal properly and I think that is such great advice and I try to remind myself of this every single day.

Best of luck to you.

[KathyInIowa]

Hi.....

I agree 100% with mistybowe. I would rather be pain free than continue with certain activities.

I was a runner & biker - competed in local road races and triathlons. I was 52 when I herniated the only halfway decent disk I had left, L4/L5. That pretty much ended my running days. Heck, I could barely walk for 3 years.

I am 10 weeks post op from anterior/posterior fusion from T10 - Sacrum. I'm obviously still in the "recovery stages" but am doing well. I only walk for exercise but I can walk pain free and that is like heaven to me! I walk 25 minutes at a time, 3 or 4 times a day. I'm still adjusting to certain movements being fused, so there are certain daily tasks I still use the grabber for. But, all in all, I'm learning to adjust and I know it takes at least 12 months to get even just 90% there.

I had an orthopedic surgeon do my fusion & hardware. I had a thoracic surgeon assist with the anterior approach. There was also a person in the OR room that monitored my spinal cord activity. I'm not sure if there was a neurologist there or not.

"Ed's quote: I would say the simple way to figure healing rates in a 50 year old adult would be to figure 10% per month.....The first few weeks are pretty much a survival mode where you spend every single minute trying to get comfortable. Getting comfortable after surgery is hard, and sleep is difficult. Sitting down is generally limited to 2 minutes for the first month, but it does get better with time. "

In regards to Ed's posting that I copy & pasted part of (above): I agree with this. I am at 10 weeks, and I still remember vividly the first several weeks. Definitely survival mode. Not necessarily just the pain - thankfully good drugs helped a lot with that. I was not prepared for the effects of getting no sleep, chronic insomnia, and thigh pain. My legs hurt worse than my back ever did. They still do. And, I was unprepared for the emotional roller coaster that I would be riding. I don't usually struggle with emotions but I sat around crying for no real reason in the early weeks. Looking back, I think some of that was the effects of the drugs. Who knows.

Since I was having an anterior approach, I was very scared of abdominal pain. I can honestly say, I had very little. I don't know if the pain meds were handling that, or if it was so minimal compared to my other pain or what, but that was never an issue for me.

I wish you luck & success on your journey!

[Robbi1464]

Misty, you just recently had your surgery... how are you doing on the pain medications? I have to feel like I would be like Kathy because I've only taken them a couple times in my life and they seem to get to me emotionally if I take them for too long. I know this road is going to be the most hardest I have ever had to endure.. and the word that Ed used, "survival"... really hit home to me. I have resolved myself to the fact if I may never be able to get back on a horses back.. I will take care of the one I have as a pet. I'm adjusting already. Since I wore the brace for such a long time, I never have bent from my back.. I bend naturally from my waist so that probably won't change. I don't bend to tie my shoes now, I raise my leg and tie them. I think that is from being braced for that time. I worry about the pain I will have - a lot! I read the posts here and want to ask so many questions.. like how do you sit in a car for your follow-up visits... such little things we do now.. that I have the fear of the unknown...

Why do you think your legs are hurting so bad Kathy? Has anyone else had that problem?

[jackieg412]

Actually you will not be able to bend from the waist. If you are fused to the pelvis it is not possible. But you can bend from the hip. The difference is if you sit on the ground with your legs straight out and try to bend ,that is the waist. Can not be done with fusion to pelvis. But if you sit and bend your legs toward you you will be able to reach forward some. That is from the hip. It is a difference and almost everyone adjusts. Also you can squat or get all the way down and then stand up. Of course this is after you heal. Us fused people just keep working things out.

[Pooka1]

I have resolved myself to the fact if I may never be able to get back on a horses back.. I will take care of the one I have as a pet.

Hi. I am a fellow horse owner. My twin daughters were fused several years ago.

I just wanted to say I admire your decision to keep your horse as a pet. That's what I did with my first horse after I retired her and what I will do with my present horse when I retire him.

Please don't give up hope of ever sitting on your horse again. Please ask your surgeon about whether you could ride again after you are healed. I am not a surgeon and I have no knowledge but I would be shocked if you couldn't at least walk trails on your horse. I think you might even be able to post trot (maybe not sit trot) and ride canter on a smooth horse. My daughters were fused T4-L1 and they do not have a riding restriction though they gave up riding long before they were fused. I am not sure if people fused through the lumbar would necessarily have a riding restriction. You have to ask. And when you do, please ascertain your surgeon's level of understanding of riding. I am not sure these guys know what is involved necessarily. I don't think the issue is falling off either but you have to ask.

Good luck.

[LindaRacine]

To sit, no one really bends at the waist. If you take a look at this picture, you'll see that all of the bending occurs at the hips:

https://s-media-cache-ak0.pinimg.com...7a3bc0b155.jpg

The only bending at the waist anyone does looks like this, and is something you won't be able to do once your lumbar spine and sacrum are fused:

https://thumbs.dreamstime.com/x/x-ra...n-20598960.jpg