I had spinal surgery T11 thru S1 has anyone had this major surgery?

Hi - Hopefully by now you’re well on your way to feeling better. I just joined this group, and wanted to let you know how my situation has progressed. I started being concerned about the pain (as I walked) when I developed foot drop in 2016 - something I had never heard of before. My pain increased continuously. I tried everything I could think of including acupuncture. My physiologist suggested more than once I should consult with a surgeon, but I was afraid of spine surgery and continued to have spine injections (3 or 4) until it didn’t work, and the pain became debilitating. It was torturous pain that plagued me constantly. I lost 20 lbs because even lifting my hand was an effort, and all I could think about was getting through the next minute. I was given opioids which helped to some extent, but I finally gave in and was so lucky to be referred to a neurosurgeon who called me and asked questions and then saw me the next morning - and did a laminectomy the next day. This was possible (and complicated) because it was March 2020 and only emergency surgeries were allowed due to COVID. It was considered an emergency due to the almost complete numbness of my left leg & foot and partial of my right, extreme pain and most concerning, urinary retention. The surgery was done to relief the pressure of the severe spinal stenosis (1 of 3 DX). The pain didn’t go away as quickly as it would have had I had surgery sooner, and not needed so many pain pills - but I didn’t know that then. About a month after surgery I just stopped taking the opioids because they didn’t seem to be helping. Within 8 months I went back because the pain was starting again, and I didn’t want it to get worse. Again, lucky to live where I do - Seattle - where there was a neurosurgeon who did the specialized surgery I needed. I had 2 surgeries on December 6 & December 9, 2021 an anterior with a transplant specialist who moved my organs for the neurosurgeon to “install” the base structure and posterior to “install” the spinal prosthetic to grow the new spine. All was titanium (of course) and my surgery was a Complex Multi-fusion Spine Surgery, T-11 - S-1. I could say it was a tough recovery but although it was a long recovery, I only noticed I was no longer in the pain caused by my spine “deformities” and I kept improving, except for what I believe is permanent nerve damage caused by waiting too long. I still have some numbness in my feet, and still take Gabapentin due to some weird leg feelings when I’m in bed at night (bedding touching can be uncomfortable sometimes) but I’m grateful every day. And just had a TKR so becoming a complete Cyborg!

Hi friend. I'm in a similar situation. I was fused from L1 to L4 at age 16 with one rod and 4 screws. At age 21 that rod snapped in half (nothing I caused) and they performed a 2nd surgery to take out the old hardware, then a 3rd to place 2 rods and 11 screws at T11 to L4. I'm now 49, and last year I had to extend my fusion to add my L5 and S1 due to disk degeneration and spondolisthesiosis. At my 2 month check up post surgery after my complaints of painful clicking in my lower back it was found that 2 of my new screws were loosened and had to have a 5th surgery to remove that hardware and instead place 2 plates and screws. That bad boy isn't coming loose again! But that surgery was excruciating. They had to reopen my scar on my back to remove to hardware, but cut me on the front side from above my belly button to my groin to place the plates and new screws. It was the most grueling procedure I have ever had. Afterwards there was a ton of in home PT just to get me mobile again, then I transferred to outpatient PT. They decided I would get the best results by doing aquatic therapy, and let me tell you it has done wonders to increase my mobility as well as core strength. Now I have a membership to my local YMCA and I hit the pool 2-3 times a week to do the exercises they taught me. I never thought I'd ever be able to get rid of my walker, but now I can walk to the end of my street and back with my cane. The cane may continue to be a part of my life outside of my home, but I'll take that after all I went through. I highly suggest getting into a pool. It has done so much for me after basically living in my bed everyday. I wish you the most healing hug. You are so strong just for getting the procedure, and that's a huge fusion all in one go! Don't give up. If I can go from muscle wasting and barely able to microwave myself a 3 minute meal to walking to the end of my street, I know you can continue to heal and increase your mobility too. < 3

Hi - Hopefully by now you’re well on your way to feeling better. I just joined this group, and wanted to let you know how my situation has progressed. I started being concerned about the pain (as I walked) when I developed foot drop in 2016 - something I had never heard of before. My pain increased continuously. I tried everything I could think of including acupuncture. My physiologist suggested more than once I should consult with a surgeon, but I was afraid of spine surgery and continued to have spine injections (3 or 4) until it didn’t work, and the pain became debilitating. It was torturous pain that plagued me constantly. I lost 20 lbs because even lifting my hand was an effort, and all I could think about was getting through the next minute. I was given opioids which helped to some extent, but I finally gave in and was so lucky to be referred to a neurosurgeon who called me and asked questions and then saw me the next morning - and did a laminectomy the next day. This was possible (and complicated) because it was March 2020 and only emergency surgeries were allowed due to COVID. It was considered an emergency due to the almost complete numbness of my left leg & foot and partial of my right, extreme pain and most concerning, urinary retention. The surgery was done to relief the pressure of the severe spinal stenosis (1 of 3 DX). The pain didn’t go away as quickly as it would have had I had surgery sooner, and not needed so many pain pills - but I didn’t know that then. About a month after surgery I just stopped taking the opioids because they didn’t seem to be helping. Within 8 months I went back because the pain was starting again, and I didn’t want it to get worse. Again, lucky to live where I do - Seattle - where there was a neurosurgeon who did the specialized surgery I needed. I had 2 surgeries on December 6 & December 9, 2021 an anterior with a transplant specialist who moved my organs for the neurosurgeon to “install” the base structure and posterior to “install” the spinal prosthetic to grow the new spine. All was titanium (of course) and my surgery was a Complex Multi-fusion Spine Surgery, T-11 - S-1. I could say it was a tough recovery but although it was a long recovery, I only noticed I was no longer in the pain caused by my spine “deformities” and I kept improving, except for what I believe is permanent nerve damage caused by waiting too long. I still have some numbness in my feet, and still take Gabapentin due to some weird leg feelings when I’m in bed at night (bedding touching can be uncomfortable sometimes) but I’m grateful every day. And just had a TKR so becoming a complete Cyborg!

@heavens12 Hi Catherine, I am scheduled for a T11 to L4 fusion next Wednesday at the Phoenix Mayo Clinic. I have a very small idea of what to expect based on what I have read from others’ experiences. I plan to journal my experience and recovery with the hope that it will help someone else.
Prayers for your continued recovery and more mobility. I have yet to find a physical therapist who is experienced at post spinal fusion surgery but I am going to keep at it until I find one. I know this is critical for the healing process. Are you doing physical therapy regularly?

Hi Catherine, I am a active 68 year female will be having the same surgery in January, the 14th. T11-S2. I am in the process of revamping my home and purging as I expect I will not be able to access lower cabinets or lift for some time -- maybe ever. I am already grieving the loss of mobility. Gave away my golf clubs and hopeful I will bike again. Praying the trade off is I can walk and stand without pain. My understanding is patience is what will be required. Another person, reached out to me a year ago on this support group and said not to give up....she is going on year two (post surgery) and is beginning to get back to a normal life (abiet adapted for the mobility restrictions. ) She said she gave up a few times and now is mad at herself for giving up. All this is to say, don't give up. Maybe we can support each other through this next year! Tamra

Hi Catherine, I am post surgery 2.5 months and feeling more like myself. I am able to stand and walk. Walked 3 miles today.

I do not bend or twist intentionally as I need to wait for at least a year for the back to fully fuse. I start PT in May and for now am doing light strengthening and movement. I am very encouraged.

How are you doing?

The most disappointing thing is I believe my rectus abdominals were separated from surgery. More typical is surgery is supine ( I was prone) and happens with pregnancies. Has anyone else delt with this??
Tamra

Hi Catherine,

After having a 3 level fusion back in 1991, and ending up with having to have a pain pump implanted to help control severe back pain. Am now scheduling back surgery, T12 to S1 fusion. The pain and lost of all activities has made my choice easy. Prayers and positive thoughts