Has anyone had scoliosis surgery?

Jennifer:
Honestly, all I can remember is my last surgery was done here in FL, when my surgeon fused the L5. I have no clue how he fused it or even where it was fused. He may have said, but I cannot remember. Anyway, it never helped relieve my pain, which has been there in the same place, not radiating anyplace, 15 years.
Well, if Mayo offers me surgery, I’ll more than likely decide to go for it. I don’t know f the hardware is he problem, but I’m leaving that up to Mayo to tell me. My guess is that the hardware is not the problem. I’m no doctor, but since I’ve
had the pain 15 years, perhaps something is pressing against a nerve. That’s my best Gus’s. However, the last nerve block injection I had a week ago only made that whole area angry. The pain is back with a vengeance, and all the Pain Management doc says is try yet another injection. I almost cried. As you can guess, I’ve had numerous injections over the years, all with zero success. So, I can choose to: (1) Stay here and keep trying injections or (2) Make an appointment with a doctor in S. FL or (3) Wait to get an appointment at Mayo in December, and pray they have a cancellation before then.
My main reason for going to Mayo is quite simply to relieve the pain. If they recommend more surgery, then I don’t have much of a choice, except to give it a try. To answer your question about PT, I have tried multiple PTs over the years, all with no success.
Last February, I fell in the shower. Broke my hip in 3 places. Had what my surgeon called an open reduction fixation - not a hip replacement. He later admitted he should’ve done a replacement. Soooo, I’m also dealing with that. I don’t have pain, but I do have a kind of “unusual” way of walking. Anyway, I just tossed that in for good measure.

@wascaly
Karen,
The most painful event I had in my life was a diagnostic epidural spinal injection that immediately caused off the charts pain and I was convulsing and was about to pass out. I think I reacted to a component in the injection and it caused inflammation. I was getting new stabbing burning electric pains shooting into my dominant hand. They reminded me to breathe.

I had been doing deep breathing to music to work on my fear, so I did this and also visualized a hawk flying above me while I was listening to the music in my head. It worked and I learned that I could cope with pain that would have otherwise caused fear. Fear escalates pain a lot, so staying calm can help a lot. I had this random stabbing pain going on for 6 weeks and in time, it happened a bit less frequently until it finally stopped. Then I had cold sensitivity in my hand. That has since resolved. Spine surgery didn't come close to this level of pain, and since I knew I could handle pain, it was easier to go through the unknown of spine surgery.

One of our mentors, Rachel, talks highly of Dr. Sletten who runs the Mayo Pain management workshops at the Jacksonville Campus and she has done this program. The Pain Management program runs for a few weeks for learning how to deal with pain emotionally. If there are no surgical options, maybe that could help. There is a pain syndrome called Central Sensitization where the body just gets more sensitive to pain.

Here is a link to the discussion.
Central Sensitization - please share your stories
https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/
The other type of physical therapy that can help release tight surgical scar tissue is Myofascial release. I have done a lot of this with my therapist who is certified as an expert level and it helps me a lot. Scar tissue can escalate pain too, and all surgery creates scar issue. There is a provider search at https://www.mfrtherapists.com/

Here is our discussion where you can learn about how fascia causes pain.
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
These are just some thoughts and you can utilize these regardless of if there is a future surgery or not.

Hopefully you'll find an answer somewhere. Have you heard of Myofascial Release before? You may want to try this while you wait for appointments.

Jennifer

You're a trooper! Praying that your recovery goes well! Take care of yourself and get plenty of rest. I had my procedure as a teen and it was still a major recovery process. I know that in the meantime there's a lot of uncertainty that comes with that - sometimes it's an emotional roller coaster! Everyone's timeline is going to look different, too. Don't be discouraged, though. I didn't know what to think when my restrictions were suddenly lifted at 6 weeks and I didn't FEEL less stiff than I had the week before, but I started feeling much more normal a little later after I started carefully doing my normal activities again. Pain went away before the stiffness did, though. It was a gradual and unpredictable process. One of the milestones for me was after about 2 weeks when my sleep started to really improve. If you've got a TV or at least a phone where you can pull up something good on YouTube, that might help by taking your mind off the pain; I have fond memories of sitting there watching a short sitcom and eating blueberry muffins - or when I was tired, just lying in bed and listening to it. Do you know if you got any taller? That was one of the fun parts for me about coming home, for my brother to see that I'd gained on him! 😀 Hang in there, champ. Hope you feel better soon.

I had my scoliosis surgery on 9/28/23 stayed in ICU for two days hah to have 4 pints of blood and 3 drains in my back .and I stayed in Tirr Rehabilitation for 14 days now I’m home with Home Healthcare coming for 2 months . I had every vertebrae.in my back from bottom of my neck to my tailbone done with screws bolts and rods including my pelvis I had to have a cage put in the lumbar of my spine after taking out older hardware and spacers put in the top of spine because I broke 2 vertebrae that healed but left it collapsed I use to be 5’ 8” I had stooped to5’ 4” now I’m 5’6 1/2” . It’s been a rough road but I’m going to make it with Gods help , many prayers lot of help especially from my husband and determination that I will be able to do some of the things I enjoy doing . I’m 75 years old and have suffered for 15 years with 3 previous back surgeries , with Gods help I will be able to have a good quality of life in my remaining years .

Update from me75 I had my scoliosis surgery 9/28/23 the doctor had to do a lot more than he had planned it took him 14 hours to do my surgery , he took out my pain stimulator and all hardware from previous back surgeries he had to build a cage in my lumbar spine in order to put new hardware and spacers in thoracic spine then he put rods and screws and bolts in every vertebrae in my spine from bottom of my neck to my tailbone and pelvis . I was in ICU for 2 days had 4 pints of blood and 3 drains in my back . I stay in Tirr Rehabilitation in Memorial Hermann Hospital for 14 days and now I have Home Healthcare for 2 months . I go back to Doctor Quinn in Houston Tx. 11/20 for more X-rays . I’m doing pretty good right now a lot better than I thought I would I’ve learned how to walk again and had to learn how to bend over from hips and not waste , I can get up and down out of bed by myself with help of bed rail my pain level now is usually a 2-3 on a scale of 10 . I thank God for all he has done and is going to do for me , it takes a lot of prayer and determination to go through this kind of surgery . I’m sending X-rays I hope I’ve helped someone God Bless and last but not least my sweet husband has been with me all the way through this . He has taken care of the house work , cooking and helped me bathe and dress myself and keep up with medication and all his prayers to thank God for him

For all that gave me their story of scoliosis and helped me with their information . I want them to know I did have the surgery , I have rods screws and bolts , cage and spacers from bottom of my neck to my tailbone and 4 long screws in my pelvis and 4 pints of blood . It took 14 hours of surgery 2 days in ICU with 3 drains in my back , I stayed 14 days in Tirr Rehabilitation Memorial Hermann Hospital and now Home Healthcare for two months . I’m having to learn how to walk again and bending from hips not my waist . It’s been hard but with a lot of determination and prayers and God watching over me I’m going to make it . Thanks everyone for listening to me and your help . I hope I’ve helped others to know what to do . I watched my dear mother go through life not doing anything but suffer and in a wheelchair and I didn’t want to do that when there are doctors that can help .

Wow! You're amazing. So excited to hear that you're home and continuing to recover! And that's awesome that you're able to get out of bed by yourself! Take care and God bless.

Thank you for all your information . It’s so helpful to hear someone else’s experience that has been through scoliosis surgery . Right now I’m so afraid I might move the wrong way and cause harm to my hardware so I’m very stiff feeling and tinse and that makes my muscles feel tired and hurt , doctor doesn’t want me to ware a neck collar very much cause I will depend on it to much but I’m learning to keep my head inline with my body. I have a lot of shoulder pain , hopefully that will go away and my walking is a little jerky on one side . Thank you so much for listening to me , it’s feels so good to talk to someone that has been through this .

I use to by 5’ 8” in my younger days then 5’7” after I started having all the back problems I shrunk to 5’4” after surgery I am now almost 5’7” lakes 1/2 “

Oh wow! That’s awesome that you gained so much height back! I’m about 5’7” now, too, but I was 5’6” before surgery.