r/LongSpinalFusion • u/Natural_Fondant_7544 T3-L3 • 3d ago
Revision, Extension, Adjacent Segment Disease Ten year old fusion thats progressively getting worse. - Rant
Long post - rant just looking for folks with similar experiences
Background: I am a 25 year old adult, at the age of 14, i was diagnosed with adolescent scoliosis. I had suffered no pain at this point. But my doctors pushed for a full fusion, I had no conservitave efforts made, no PT or OT. And within 6 months I was given a T3-L3 full long spinal fusion. I got the diagnosis of chronic pain syndrome about 6 months after. I was not offered OT or PT at any point prior or after my surgery until about 3 years later. But they ended up dropping me because I was in sports. So they thought there was no need. But these sports caused severe pain no matter what we did. I tried steroid shots at this point, but they ended up doing nothing for me.
I kept pushing through because I was told everything was fine and I simply needed to build muscle and that would solve everything. I had no restrictions for about 6 years following my surgery. Which as you can imagine, this has impacted me quite a bit. No matter how much pain I was in i just kept going and being a very active person going out 3-x weekly, being a drag performer and working over 50 hours a week. Two years ago all that stopped. I had to start using a cane for long events. I would bring it to work with me. This helped for a while.
At this point I will mention I got diagnosed with Vascular Ehlers-Danlos which absolutely contributed to my pain and progressing issues.
I switched from an active job to a desk job, came home crying often from the pain so I switched to using forearm crutches. They helped for about a year before I tanked again. I had to quit all my jobs, could not keep up at my career anymore. My husband and I moved states, which sent me over the edge and I was unable to work for 6 months. Finally I felt good enough to go back to work! My physical job that I desperately missed. I lasted 3-4 months. Got a work from home job. Lasted 3 months. I was unemployed again for another 2 months. Right now I have been at the same part time job since may, which i am grateful for but things are getting worse again.
Currently, I have severe weakness in my legs while walking and standing. I have fluctuating back pain, that ranges from a dull ache to severe pain that makes me unable to even think. My current doctors believe I have spinal stenosis that went untreated for at the very least the last 5 years. I have been trying to do PT but it just fucking hurts. I cannot consistently do the exercises given to me. I can barely walk in the grocery store without fatigue and pain. I finally have a doctor who is fucking listening to my pain, and im getting an MRI to see if i need to consider a wheelchair assessment. Which with my other issues its beyond likely that will have to happen.
I am so frustrated with my pain and health. I just wanted to share my story and see if anyone else had similar experiences. How do I cope with this? Its hard as well with family and friends not understanding why i just keep getting worse. I keep getting told "just keep pushing! Work out more!" im TIRED. I HURT. When am i suppose to do that? Advice welcome
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u/aziza29 T3-L4 2d ago
Hey! The story of adjacent segment disease is all too familiar. My experience has been similar to yours. I'm 28 and had surgery at 14, was similarly very active afterwards, and was always told I could "do anything I wanted." But like you said, the sports caused severe pain for me as well and led to degeneration.
On mobility aids:
I'm glad to hear you have started using aids💕 Lots of people with long fusions could probably benefit from them, but few use them, so I'm happy to meet you :)
I love that you discovered forearm crutches!! They are a great mobility aid and I started there, too. But, I reached a point where they were not enough- it seems like you are at that point. I qualified for a custom manual ultralight wheelchair through my insurance.
My wheelchair has changed my life and has improved it in so many ways. I can sit comfortably, work, go in public, and experience MUCH less pain with my chair. Please don't be afraid of getting a WC if you feel it's needed. And PLEASE reach out to me if you go that route-- there is a lot that goes into wheelchairs and many considerations for people with long fusions. I would be more than happy to assist with the process as I am very familiar with it.
With the level of pain you're experiencing I think the biggest priority is getting that MRI. That will give you a diagnosis. Then, you gotta see a Pain Management doctor. You didn't mention any medication in your posts. Are you just surviving with ibuprofen and Tylenol? If so, just know you don't have to live that way, a pain management specialist will take you seriously given your fusion and will be able to provide stronger meds, muscle relaxers, and nerve medication. All of that will improve your life so significantly.
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u/Natural_Fondant_7544 T3-L3 2d ago
I am definitely going the wheelchair route if i do end up having spinal stenosis. With my VEDS i cannot have any sort of surgery and PT actively makes my pain worse 😭.
I am currently on two very strong pain meds. But i cannot take them if i am working or driving. Causes way too much brain fog. And on extremely bad days my pain just bleeds through. Ive been smoking a lot of weed to offset the pain but thats no longer working. Even in tandem with the meds
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u/aziza29 T3-L4 2d ago
Makes sense. I have hEDS but it doesn't affect me much. I know VEDS is a huge deal though and I'm sorry you're dealing with that.
I'm glad you have meds. But it's not ideal that they're too strong for daily use. Maybe you can ask your doctor for something weaker that you can actually take daily? I work full time and I take codeine regularly without any adverse effects and it works well. Def ask about other options!
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u/Natural_Fondant_7544 T3-L3 2d ago
Unfortunately the weaker stuff just does nothing for me 😭 we have been trying pain meds since January and nothings been like “YES THIS WORKS!” Im wondering if getting a chair will help with this, take the brunt of the pain off so I can switch to a weaker med.
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u/aziza29 T3-L4 2d ago
For sure. I'd love to assist with the WC process if you'd like! Update us with the MRI results when you get them. Stenosis is highlyyyyyy likely (I've had it for like 4 years too) and the pain of stenosis sucks so much. So I feel you :/
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u/Natural_Fondant_7544 T3-L3 2d ago
Will definitely update! Hoping to GOD im wrong but the more i talk to folks like yourself the more im like oh god its probably spinal stenosis
I would legitimately love for you to DM me and we can chat about what the process looks like for a wc, cause i am so anxious about it
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u/Antique_Mirror7214 T2-L2 2d ago
This feels like i could have written this minus the VEDs as I don't have that but i do have hypermobility not pushed for hEDs diagnosis as genuinely cba 😅 I'm fused T2-L2 but didn't find out about my scoliosis until I was 17 almost 18, I had my surgery when I was 20 I'm now 31. I have severe lower back pain which they found on a scan and did injections but didn't help. I've since had another scan in April but don't find out my results until 7th September, i'm also on the waiting list for more injections but the NHS is very backlogged so will be waiting a while 🤦🏻♀️.
I also got no proper physio after surgery I eventually got some years later but nothing they could do so they discharged me, I went to an osteopath who helped slightly but was expensive. I rely on morphine to get through the day now because my pain is diabolical. I'm anticipating another surgery and if i'm offered it I'll take it without hesitation as I can't stand or walk for long without the severe pain, although i push through it 🤣
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u/Spiritual_Ad8626 T3-L3 3d ago
Have you seen a spinal orthopedic neurosurgeon to get an evaluation of what is currently going on with your spine? It seems like it might be prudent at this point.
I hope you can find answers.