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My journey with a T11 to L4 spinal fusion - 40 degree scoliosis curve
Spine Health | Last Active: Oct 29 8:16pm | Replies (153)Comment receiving replies
Hello! This is the beginning of My Journal, through my journey, to have a spinal fusion surgery that will take place on December 11, 2024 at the Mayo Clinic in Arizona.
This is my quick intro and I will add to it as the days go by.
In December 2023 after a 31 year career of firefighting and a lifetime of riding horses, I finally went to my doctor and told her that I could not handle my back pain anymore and that I need to figure out what was going on with it!!!
After x-rays, an MRI, and a CT scan, I was diagnosed with a 40 degree scoliosis curvature of my spine.
Looking at the images, made it very clear to me where my pain originated. I consulted with a surgeon at UC Davis in California and was scheduled for a T10 to L4 fusion surgery on October 1, 2024.
I research and pray about everything. This brought me to the Mayo Clinic. I reached out to the Phoenix clinic and sent them my imagery and medical files and they called me the following week and said that a surgeon had accepted me as his patient.
Their soonest evaluation appointment was a month after my scheduled surgery at UC Davis so I canceled that surgery and then met with the surgeon at the Mayo Clinic.
The surgeon was kind and attentive and very articulate as to my situation and what he thought would be best as far as correcting my curve and relieving my pain.
I left his office excited and hopeful at a future with less pain, with a surgery date scheduled for December 11, 2024 for a minimally invasive spinal fusion that would be, at the most, a T11 to L4 fusion. The minimally invasive surgery would take much longer than the open surgery, but would not do as much damage to my body and would most likely not require a blood transfusion and would quite possibly create less pain and a quicker healing time.
I am a single mom with a young daughter. We live on 5 acres with three horses, three dogs, four cats, ten chickens and two fish.
I have a list that I am working on every single day to get things in order for my surgery. My parents live on my property with us. My mom will take care of my daughter throughout my healing. One of my sisters is flying with me to Arizona, and I am prepared for us to stay in the hospital for a few days and then in a hotel for a few days to heal enough to fly home.
I am now almost 3 weeks away from surgery. I am planning to take a carry-on and a personal item. I have front button up and snap up shirts, lightweight clothing and everything else that I can think to pack to get me through the first week of surgery.
I have a room reserved at the Sleep Inn that is 4 miles away from the Phoenix Mayo Clinic. I also have a reservation at the Help in Healing Home that is on the 8 acre Phoenix, Mayo Clinic property. There are pros and cons to each facility. The sleep in provides a free shuttle on every half hour, but does not have a recliner in the room. The help and healing home, which is only $50 a night, is walking distance from the hospital but requires you to have a rental car and you share the kitchen, living room, pantry, and library with five other rooms.
The Sleep Inn has nice amenities and was the most affordable hotel that I found. After weighing out the pros and cons of having Uber, drop us off the airport versus being in pain and having to deal with returning around car, I am choosing to stay at the Sleep Inn.
This is my first entry on my journey and I am going to call it a night. I would love to hear anyone’s feedback, ideas, tips to help me and others navigate through this process. It’s scary and yet I am so hopeful. Thank you so much!
Replies to "Hello! This is the beginning of My Journal, through my journey, to have a spinal fusion..."
Please reply to the Group with the results after the scoliosis surgery. I have a curvature as well, a 20%, had a Abbott Eterna Stimulator implanted February 2023. The stimulator isn't performing as I intended it would, and the trial was successful. This occurs to many of us: Trial works, yet the SCS, no. The doctor was not with Mayo.
I am 69, extremely active, and am nervous as the curvature is becoming worse. I saw Dr. McClendon eight years ago, and after the fusion with L5-S1 at UCSF in 2014, he was perplexed what to do. As it is, a Mayo neurologist prescribed Cymbalta, which added nothing; and I am at PT, doing the exercises religiously.
@vikkitennis I will definitely keep posting about my surgery. I plan to post on my preop day 12/10 and then as soon after surgery as I feel up to it.
Is your curvature becoming worse above the fusion area?
@sherrym25 I'm glad to hear you have a plan for your spine surgery and your travel details worked out. I can give you one small suggestion that helped me with my spine surgery. Have slip on shoes. You can do that easily with gym shoes by adding elastic shoe laces. You won't be able to bend and this way, you won't need someone to tie your shoes. Good luck with your surgery. I liked hearing about your animals. I have one horse (boarded) and 4 cats. Your furry friends will lift your spirits and help you heal.
Hello Sherry. I hope your procedure went very well. I had my spinal fusion way back when scoliosis was a new disease and testing in middle school was new. I was 14 when it was discovered I had a quickly progressing S curve from lower cervical to mid lumbar regions. They pulled me out of school to do the surgery asap. I was in the hospital sedated 7 days then a body cast and 7 more days. The cast was from my chin to my hips and weighed 40 lbs. After 5 months, the cast was changed to an under arm to hip cast. I was active and ignored the doctor's warnings to never sleep on a water bed and other silly things. The only things I have found difficult with an 18" rod in the middle of my back is doing a summersault or cartwheel and squeezing into small areas. Now that I am MANY years older, I find my spine above and below have taken the brunt of my activities and require some TLC. It never stopped me from playing broomball with a cast on, horseback riding, dog wrestling as a vet tech, having children, and all activities of daily living. I mostly forget that I have impeccable posture until someone comments on it or asks about my scar.
Live your life to the fullest and God bless, Tanya
Hi Sherry. I’m in a very dark place right now. They postponed my surgery due to the infection and the X-rays showed severe constipation which was also a concern. I don’t think either of them on their own would’ve been enough to cancel my surgery but both together had them worried.
I spent so much money… over 4K arranging for people to take care of my livestock, my pets, watch my home and to pay someone to accompany me on my trip, airfares, lodging, plus the time involved, etc.
And of course I’m still in serious pain. I’m praying hard for a reason why this all happened, but I need to remember God knows what He’s doing and He doesn’t have to explain anything to me!
I’m just not really in the mood to discuss much, I hope you understand.
I do have one question for you. Why did you decide to change from you the University of California to Mayo? When was your surgery and how old were you when you had your surgery?
I’m in the beginning of your journal, and plan to finish it tonight.
Thank you Sherry for your kindness. I live alone, so, being lonely AND in severe pain really wears a fellow down. I’ll get back in the ring soon. I need to come up with a back up plan. I wish I could tell you why, but I can’t on this forum since it involves Mayo and I don’t want to upset anyone.
Thanks again for your prayers and empathy.
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Great planning and praying! 🙂
I had cervical and lumbar surgeries in 2022 and 2024 and the hardest was lumbar (L3-L5 decompression and fusion). Mine was invasive. Pain was 11/12 out of 10 for the first week but started to get better gradually afterwards.
I bought grabbers and a bed assist bar to help me pick things up and maneuver in bed/help me get out. I also bought a walker at the hospital and had a cane at home to help me stabilize when standing up and moving about my home after surgery. Bathroom/toilet wiping tool helped to wipe when I wasn’t able to twist/turn. Lots of pillow to prop up head and legs when in bed and a bedside organizer for everything you need close to you next to couch and bed. I used my chair in the shower when I was able to (I needed to wait a couple of weeks but did sponge baths using my hand sprayer).
I am also a single parent of a 15 year old son but do not have any family so you are blessed to have the help you have. Don’t forget to stock up not just for yourself and daughter but also all of your pets. I have 2 rescue dogs and 8 cats so having food, litter, etc. stocked, helped with heavy lifted before surgery. Bending down and twisting is restricted so putting food down and picking up bowls was difficult. Get all vet appointments and grooming done in advance. Pay as many bills ahead as possible to reduce burden for several weeks post op.
A plane trip after surgery puts you at risk for blood clots so make sure you are able to move around often. Will you be in first class? You will be in pain and need more room to move around. If you are in CA and need to go to AZ (I used to live in CA), I would probably opt for driving rather than flying. Yes it is longer but you can control stops and movement breaks and fully recline in your car seat. I moaned in pain for the first week so would be embarrassed to be around people on a plane. 😉 I would have never been able to fly with the pain and discomfort I was in.
Good luck and keep praying! Ask God to guide you in preparing for what is a major surgery, even if minimally invasive. 🙏