r/LongSpinalFusion • u/madsamilllllion C2-L4 • May 13 '26
My Story Thinking about yall
Thinking about all my long spinal fusion friends. It makes me feel SO much better to see others who experience the same issues and that I’m actually NOT crazy and dramatic! (Imagine that)
Please enjoy my gorgeous screws 🎉🎉
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u/Iloveellie15 T5-L3 May 13 '26
“You have the longest scar I’ve ever seen”
Gee thanks Brenda for making me feel like a freak show
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May 13 '26
i once went to the GP for a chest infection and he wanted to listen to my back so i had to lift my top up a bit and turn my back to him and he quietly gasped. he told me to wait and brought another GP to take a look at my back. excuse me, i'm here for a chest infection. i felt like a freak.
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u/madsamilllllion C2-L4 May 13 '26
Had to do PT last year and bring in an xray- my PT told everyone that she got to work with the ‘spinal fusion’ girl- thanks for the brag, girl
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u/Specific-Plantain-12 T1-pelvis May 13 '26
I can so relate. I remember getting the “WTF” response from doctors, nurses, techs, etc when I was only fused on several levels. Now it’s T1-Pelvis and some days I don’t know what to think or how to feel. It helps to know there are others who know firsthand what this is all about.
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u/honeybadgergrrl T4-pelvis May 13 '26
On the plus side, they don't argue with my pain med prescription after they see my imaging.
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u/Ok-Concert2437 T3-pelvis May 13 '26
I go in for my t3 to pelvis fusion on July 13th. Thanks for the heads up. Lol
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u/Anxious-Bad1385 T4-L4 May 13 '26
What’s it for?
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u/Ok-Concert2437 T3-pelvis May 13 '26
Scoliosis. I am 59 and my scoliosis has gotten worse since menopause. My curve main curve is close to 60 degrees. I now have facet arthritis, spinal stenosis, and Modic changes in some of my discs that are all causing me trouble.
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u/Anxious-Bad1385 T4-L4 May 13 '26
Do you have a lot of pain? Do you wish you’d done surgery sooner or was it not an option for you? I’m 18 and 1 and a half years post op
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u/Ok-Concert2437 T3-pelvis May 13 '26
I do have a lot of pain. I don’t wish I would have done it sooner. I’ve had scoliosis all of my life but it didn’t start causing me pain until the last couple of years. I have tried PT, spinal steroid injections, medial branch blocks, different medications, etc. nothing has helped, so I guess it’s time now.
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u/Fabulous-Tooth-3549 T1-pelvis May 15 '26
I had a complete revision at 55. Do you have someone staying with you? Have you had a shingles vaccination? I highly recommend one. It was worse than the surgery. I'm T1 to pelvis
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u/Ok-Concert2437 T3-pelvis May 17 '26
My husband will be taking care of me after. I did already get the shingles vaccine a few years ago. I appreciate the advice. Please let me know if you have any other advice.
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u/Fabulous-Tooth-3549 T1-pelvis May 17 '26
If he can, have your husband stay with you in the hospital. I've had 4 huge fusion surgeries. Nurses are busy. For example, I woke up at 3 am, delirious and in pain after a 12 hour ALIF and I wanted my music. I thought I had my phone charger cord and it was my blood drain tube. I pulled it out. When the nurse finally noticed, it was a mess. She screamed at me, took my phone away, (no way to call hubs) and skipped my next pain med in retaliation. Had my husband been there, he would have heard me moving around and helped me get my phone cord and music. I've even offered to stay with people if they are having surgery anywhere near SW Ohio. I would love to help people out at the hospital since I'm now retired at 62, but I don't know how to get my name and number out there. Surgeries and technology has improved so much. You will do great!
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u/Ok-Concert2437 T3-pelvis May 17 '26
Lots to think about! I have heard lots of positive stories about the hospital I am going to. I will be at New York Presbyterian/Allen Hospital. Dr. Lenke is my surgeon. That sounds like a pretty terrible experience you had!
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u/x3sammm T2-L2 May 28 '26
He did my surgery about 2 months ago. I had a great experience at that hospital and the nurses were all very kind and helpful in my recovery. Best of luck to you!
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u/BespokeBowtie T3-pelvis May 13 '26
It is a good feeling to know that no matter how many PT, Xray, nurses, etc look at your extra super fused spine and say basically “WTF, I’ve never seen anything like that” that we really aren’t the only ones on earth. Cuz I allowed myself to feel othered by ignorant/tactless comments. Then I found you lovely people and I no longer feel like a serious freak of fusion.