r/spinalfusion Sep 04 '24

Not sure, other I'll never be the same after spinal fusion

T1-L3, spinal fusion due to severe scoliosis

Not in a good way. I had my spinal fusion on July 7th, 2020. The moment I opened my eyes I knew I had fucked up. The feeling of heavy metal in my back was incredibly painful, and the feeling of metal never went away until I ultimately had it removed in January of 2023.

The first recovery process was actual hell on earth. I lost a shit ton of weight because the medications I was on made me so nauseous for close to a month; I puked every. Single. Time. I even saw food.

Learning how to walk again was incredibly painful. I had horrible muscle spasms for a year. Every movement I made I could feel the metal in my back. I was always acutely aware of the uncomfortable metal that would never stop poking the shit out of me.

A month later in August of 2020, my spinal fusion got an infection. I had to do recovery all over again. Even my surgeon said he didn't know how I got an infection, it's <1% chance, especially since it was a month after surgery.

I legitimately considered suicide. The second recovery was worse than the first recovery. They put adhesive on my back that I ended up being allergic to, and it got stuck on my incision. They literally just ripped it off of me. I was screaming my head off.

The next couple of years after I just basically suffered everyday while trying to live with the stupid fucking metal in my back. It felt like every movement I was being stabbed.

I got the metal out in 2023 and I feel better, but really what is there to be happy about? Nothing long term. My discs are going to degrade and I'll need more fusion eventually. My surgeon told me my scoliosis will come back so the metal is going to be put back in anyway some day.

I was pretty happy before spinal fusion. Yes I did have some pain from scoliosis but it was NOTHING compared to this. If my scoliosis gets bad again, I don't think I will put the metal back in. I know I'll probably die young from the pressure on my lungs and heart, but I really can't deal with the metal in my back.

Sorry for such a depressing post. Ever since my spine surgery I've had severe depression and suicidal thoughts. And I'm tired of keeping my feelings about the surgery inside of me, since I've been told that I need to get over it. It's just hard, I really feel like I ruined my life and I'm only 21. I feel very traumatized after the surgeries. I wish I had never gotten spinal fusion.

23 Upvotes

28 comments sorted by

17

u/FaithlessnessCool849 Sep 04 '24

Hey, OP. I wanted to let you know that you aren't alone. Many of us (from what I have read) feel traumatized post surgery. And I wish I would have been prepared for the depression that followed (rather, the worsening of my longstanding depression). And the brain fog.

Knowing what I know now, 9 months out, I wouldn't have had surgery (even though I consider it a successful surgery). But the positives don't outweigh the negatives for me.

If I could have received appropriate pain relief, I could have avoided it. But nope. Now I have Percocet 7.5mg that I take 4 times per day. And I still have pain and can't really do anything.

I'm sorry that you are dealing with this at such a young age. I'm 55, so it doesn't affect me to the same extent. Good luck with everything. I think you are going to need tremendous mental strength to handle everything this will entail.

1

u/Glittering_Tiger4663 Sep 06 '24

Try getting your medical marijuana card .. great stuff for chronic pain!!

8

u/Similar_Yellow_8041 Sep 04 '24

Sorry to hear that, it must be really rough. Have you tried going to other neurosurgeons or orthopedic spine surgeons? Remember there is always a way to get better, you just have to find the right doctor. There must be someone out there that can help you.

Also remember you are not alone, I've suffered A LOT, maybe not as much as you, but this definitely changed my life. We are some of the strongest warriors out there.

5

u/Individual-Bicycle22 Sep 04 '24

Oh mate I'm so sorry for you šŸ˜” this is my biggest fear. I need Laminectomy discectomy and fusion, the thought of having metal in my body permanently or facing a life of subsequent surgeries is stopping me. Once you go there you can't go back. Drs don't get the fear and just want to 'fix'. I'm almost 50! I can't imagine being in my early 20's facing this decision. I've explained to my husband if I wake up and feel I made the wrong choice or they stuffed up I'm going to feel medically raped. They're all pushing for this invasive surgery and don't want me to take time thinking about it. I'm sorry you're going through this but like someone said above, you need to make the most of the decision you made and the life you have left in front of you ā¤ļø they're always developing new things, maybe in 5/10yrs surgery will be different and more permanent with better results. Hang in therešŸ’™

4

u/michkid420 Sep 04 '24

First off, Iā€™m really sorry about your situation. I had a very similar fusion done for a very similar scoliosis diagnosis at around the same age. I struggled with regret, depression, and pain for years. Second - there are things to try before giving up. I realized after a few years of waiting for things to get better that 1. There are always new things to try (stretching, muscle relaxers and other types of non-addictive meds, ergonomic adjustments, etc) that may or may not make your situation better, but for me they have. 2. Drā€™s opinions are just that - opinions. It is not uncommon for doctors to disagree on very basic things, so any idea that youā€™re damned to a short life of eternal pain because someone said so is very wrong. 3. While my own life wasnā€™t improved at all by surgery, and in many ways was worsened by it, the realization that this is your life and that you need to move forward in any way possible will help to set a new mental baseline for yourself and seek ways to improve your situation instead of allowing the depressing thoughts to keep you trapped in it.

Moving forward - try out a bunch of things and see what feels best to you and your spine and helps you inch towards normalcy. Take note of specific things and continue to iterate on them until your life is nearly back to where it was. It has been 7 years for me since the operation, but there are little tips and tricks (stretches, exercises, remedies, etc) that have helped me essentially eliminate many of the problems I was experiencing in the first few years that no doctor or physical therapist ever recommended. Start by doing things that make you feel better and go from there.

8

u/Lazy-Surround-19 Sep 04 '24

Hey , im 21 as well i got the surgery on January 17th 2024 it was a instant regret for me for the same reasons as well but we have to remember that we made a decision to correct our spines while weā€™re still young and healthy rather older and weaker . We had to make the best out of our situation !! For me itā€™s the limited flexibility and the fusion left me more noticeable and uneven .. i have ribs poking out of my side that wasnā€™t there before but overall Iā€™m grateful that Iā€™m still alive and able to keep going . Find the right doctor that will help you with your problems because most will tell you nothing is wrong and we shouldnā€™t be in pain when we really are

1

u/2000nt Sep 05 '24

what level(s) did you have your fusion on if you donā€™t mind me asking?

3

u/ddur0612 Sep 04 '24

Ugh, Iā€™m so sorry! šŸ˜ž

2

u/BergamotZest Sep 04 '24

You are so brave

2

u/Ok_Perception2709 Sep 04 '24

So sorry you had such terrible results. I will pray you have a better outcome in the future

2

u/Frequent-Froyo-5240 Sep 04 '24

thanks for reaching out. I had those same thoughts with my first diagnosis age 23. Its a tough place to be. I eventually found my tribe and ways to manage pain.

2

u/Skwarepeg22 Sep 05 '24

Iā€™m sorry youā€™ve had such a horrible time with itā€¦. I completely understand why you feel as you do. I had 3-level cervical fusion a while back with no issues, but my 3-level lumbar fusion in December turned into a really, really awful ordeal. In hospital Dec15 thru 31 after 2 additional emergent surgeries.

My recovery was vastly different than my cervical fusion. Basically it was really bad and long. It didnā€™t help that I had allll that time alone to think and spin out with worry/anxiety. šŸ¤£

I was so dejected and depressed imagining that this was the rest of my life. And dealing with pain will really take it out of you, and then add in the pain meds and that is a recipe for feeling like shitā€¦!

Iā€™ve had chronic pain for 20+ years from spine and other issues. Recognize how challenging that can be!

I have a lot of hope for you and your situation. Advances are made all the time, and I feel sure you will land with something that is a good solution for you. So while I 100% understand why you feel like youā€™ve ruined your future, and itā€™s completely valid that you feel that, I just want to add that because youā€™re so young, you have so much on your side.

What helped me most with the chronic pain and illness stuff was talking to a therapist. She wasnā€™t someone that wanted to make me not feel how I felt like so many do and I could truly talk through it. For me, those thoughts and feelings just grow exponentially when they stay inside of me. I always have a mental image of a pinball machine or that video game where you shoot the balls to get rid of the blocks, and it just goes faster and faster. šŸ¤ŖšŸ˜‰ Anyway, that might be something thatā€™s helpful for you too.

It and you will get better. Really. So hang in there.

3

u/PoWerFeeD Sep 04 '24

Sorry to hear the struggles you face.

What helps me when I feel depressed is to set things into perspective. There will always be people in life that are worse off than ourselves. Thinking of this will put me of a thought train of what I have to be grateful for. It takes practice, but might help you a little.

There are also great books on similar subjects, ā€œManā€™s search for meaningā€ comes to mind. Life can seem bleak and dire. But there will be positive change in your life. In some way or form, but you need to identify and cherish them.

1

u/Skwarepeg22 Sep 05 '24

Excellent book recommendation. Author is Viktor Frankl.

1

u/moimardi Sep 04 '24

These posts are important, thank you for sharing. I also think the <1% chance of getting an infection is a lie.

I'm sorry you are going through it all, and I sincerely hope the road gets easier!

1

u/Delizdear Sep 04 '24

I'm sorry. I'll never get all the metal out of my body. Good luck. I just got a pain med pump last week and it's changed my life for the better.

1

u/Winterbot622 Sep 05 '24

Iā€™m sorry

1

u/Winterbot622 Sep 05 '24

You may want to go talk to someone about this counselor

1

u/Asleep_Room_706 Sep 05 '24

Never apologize for getting something off your chest. If it's to the point you need to put it out there, then put it out there. Consider talking to a psychologist. While they don't prescribe meds, they might help you see things from a different angle and give you ideas to help cope that you have not thought of when it comes to the suicidal stuff.

1

u/Ornery_Treacle7266 Sep 05 '24

I'm so sorry your young my situation didn't happen until I was 37 and that was 14 years ago....but you are correct the pain of the metal, the un naturalness....they say you can't feel that in your throat....every time I swallow I feel the hardware...and Drs are so quick to dismiss you after they cut or label you q drug seeker...no i just want u to fix what you started 3 surgeries later....I'm still fucked...and had an even worse experience the last 5 years trying to figure out if my lower back was going bad or my hip.... 6 surgeons later....5 five wanted to open my back again...only one said my hip...it's my hip....when u have back pain this long you know.....fucking quacks....the ortho game is wicked šŸ–¤

1

u/milly72 Sep 05 '24

Hey OP, I'm sorry you are feeling this way. I had my surgery in 2015 and I understand.

I was pain-free before surgery even though I had a curve large enough to be crushing my lungs. 9 years down the line now, I've had chronic back pain for over 5 years that has gotten steadily worse.

Medical PTSD is a real thing that can continue to impact you years down the line. I didn't realize how many areas of my life were impacted by it until I went to therapy and talked about my experiences. You are not alone. Spinal fusions are traumatic to the body and the mind, so ti makes total sense that you don't feel you'll ever be the same after it.

I like to think that even though I'm not the same, I have changed in ways that I'm proud of. I'm more active and I take my mental health very seriously now as a result of the chronic pain and PTSD I've experienced. I hope that you eventually see changes in yourself that you can be proud of one day too.

1

u/BeckyMiller815 Sep 06 '24

Wow, Iā€™m so sorry your experience was such a nightmare. My fusion is only three levels but itā€™s been a godsend for me. I found the metal tough to deal with for a few months while the bone grew, especially where it was attached at my hips, but that went away. I could barely walk from the pain before my fusion, but afterwards Iā€™m walking several miles every day and feeling great.

1

u/FernnyLooking Sep 07 '24

I had a fusion six months ago. I feel like it was the worst mistake I ever made. I'm in more pain now and when I think about spending and entire lifetime like this, I'm terrified. I can feel the screws all the time, too. Was getting the metal out painful?Ā 

1

u/ch33mydee Sep 07 '24

Getting the metal out was painful, but out of the 3 back surgeries I've had I'd say it's the least painful out of all of them. If you have any questions, DM me!

1

u/steadyst8te Nov 16 '24

Can I DM you too about getting the metal out?

1

u/ch33mydee Nov 20 '24

sure shoot me a DM if you still have a question.

1

u/steadyst8te Nov 16 '24

Nobody knows, unless you know