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My journey with a T11 to L4 spinal fusion - 40 degree scoliosis curve
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!
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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. 🙏
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2 ReactionsThank you for the great ideas! I am adding several to my list that I hadn’t even thought of 😊
I live near Sacramento and it’s a 12 hour drive to the Mayo Clinic. Initially I was planning to drive but my doctor said I should fly and get home as soon as possible. So plane tickets are booked for the 1 1/2 hour flight. It’s with Southwest, so no first class available but I will have them board me first with a wheel chair and the first row of seats has a lot more room. I guess the main “possible” downside of driving would be if we came across an accident that kept us stuck in traffic for awhile.
How many days after your lumbar surgery did you drive home? I’m “planning” 2 to 3 days in the hospital and 2 days in the hotel, based on everything I’ve read about healing times, although I know it’s different for everyone!
I agree and I ask God every day to guide me and he always does! 😊🙏
Minimally invasive sounds so much better to my ears, but it is still extremely invasive.
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1 ReactionHi, I'm about ready to schedule cervical infusion due to pain. I have tried every injection, burning of the nerves but nothing else has worked.
I'm 56 with 14 grandkids and I need/want to be able to do more with everyone. However I'm scared to death of having it done because my neurosurgeon is wanting to do it anterior approach due to faster recovery.
The problem is I have Achalasia which effects my esophagus from my swallowing down to my stomach and I believe it will cause significant issues with these related problems.
Just checking on any advice
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2 Reactions@cheryl46
I understand your concern. When I had my ACDF anterior discectomy/fusion, I was also dealing with swallowing and speaking issues but wasn’t sure at the time what was causing these symptoms. I ended finding out I had a large, suspicious nodule (2.5 cm) on my thyroid and believe that plus my spinal cord compression caused my symptoms. After my ACDF and later thyroid lobectomy surgery, my swallowing and speaking improved.
When they go through the front, they move the muscles rather than cut anything and navigate around esophagus/trachea/thyroid, etc. to get to your spine. They were able to remove bone spurs and my disc to fuse my C5-C6 and they put in hardware. My recovery was much easier than I expected and definitely not as painful as my lumbar spine surgery. My swallowing and speaking improved, and headaches and neck/shoulder pain improved.
What causes your Achalasia? Do you know? I wonder if it is tied to your cervical issues and compression of spinal cord/nerve roots that connect your esophagus to your brain to help you swallow. Hopefully, the surgery helps you with this. What type of doctor diagnosed your Achalasia?
I’ll pray for you to have a successful surgery and recovery and relief of your pain. Your children and grandchildren are such a blessing and you definitely want to fully be there for all of them! 🙂
It's funny because in the last year I have had a vallcula cyst and epiglottis cyst removed but never considered any correlation.
I have had 2 GI doctors diagnose me with Achalasia and recommended surgery (Poems procedure), went to Mayo in Minnesota who said all my tests were inconclusive 🤷♀️.
I actually go in tomorrow morning to discuss my MRI results which now shows that I have multiple hemangioma's throughout my spine that were not there last year.
I honestly believe all my symptoms are due to some type of autoimmune disorder but no one wants to listen to the overall issues. It's really frustrating how patient care is nonexistent nowadays.
Thank you for your response
I've asked my ENT, Speech Therapist, spine specialist, neurosurgeon and my GI doctor if my esophageal issues could be related to my spinal degenerative disc disease and everyone said no.
@cheryl46 I am scheduled for surgery on December 11 for a different type of surgery ,(T11 to L4 fusion for 40 degree scoliosis), than you are asking about, but my surgeon is amazing based on everything that I have researched and on my evaluation appointment with him, Dr. McClendon at the Mayo Clinic in Phoenix. Please be your own advocate and talk and ask questions of your doctors/surgeons and research what is best for your situation!!
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.
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1 Reaction@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.