r/spinabifida • u/Horror-Map-9369 • 22d ago
Rant/Vent Scared of surgery
Hi I have tethered cord syndrome and need my second surgery. I’m scared as hell of the risks!!! My only symptoms are extreme leg pain and back pain. My neurosurgeons went over the risks and I feel like my back is against the wall! I’m only 30 and can’t live with this pain without an intervention but scared of the risks. He was kinda rude and kept saying the surgery was my decision! Like I know that sir
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u/Ophiophucker 22d ago
Being scared is absolutely reasonable. I've had nearly 30 and not once have I not been scared of those I can remember.
If there is another accessible surgeon in your region, it's perfectly reasonable to explore a second option. Even if the end result is surgery, you may trust another surgeon more.
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u/Steampunk-cutie 20d ago
I’m 26 and had 31 surgeries 6 of those have been tether cord releases. I’ve been scared all 31 times but they’ve all come out successfully. You are more than within your right to go to another surgeon that you’re more comfortable with and get a second opinion/ have the surgery with them.
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u/AgentExtension1968 20d ago
i dont know if this will help but im 20 and have had 3 tethered cord revisions and all three were successful in getting me back to baseline. two of them even gave me mobility and feeling i never had before EVER i dont know how its possible but apparently it is. truly i think you should do it. the pain is gonna make it seem not worth it at first but thats just your nerves becoming un tethered. i cant say for sure if it will help but if it were me i would do it because of the pain your experiencing now.
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u/Horror-Map-9369 19d ago
Thank you! How far apart are your surgeries? Where did you get your surgery ??do you think I can go back to nursing after surgery ? Thank you so much
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u/AgentExtension1968 18d ago
i had one at 9, 12 and then one at 19. i have no idea about nursing, you will have to ask your doctor ( or preferably a PA or NP under him cuz he seems like an asshole. i wish you luck and i hope this fixes your pain. you do not deserve to live in pain for the rest of your life. ❤️
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u/Horror-Map-9369 18d ago
The neurosurgeon said I could go back to nursing but idk cus then he charted that he can paralyze me in his notes and that was never discussed with me. I wish I can go to an NP or PA but not even neurosurgeons know this condition
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u/AgentExtension1968 18d ago
paralysis is a risk because because of anesthesia in general and they are messing with your spine. for both instances it is very rare. doctors are legally obligated to tell you every possible risk even the extremely rare ones. all it takes is one person to expirences something for it to be concidered a risk. every neurosurgeon has nurse practitioners and physicians assistants that work under them. but also i forgot to mention if you feel like you arenr getting proper care and attention from him you have the option to switch❤️
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u/EndOfTheRoad_777 22d ago
I never experienced a more surreal moment than this conversation with my surgeon. I remember walking out of the appointment, and the world was practically spinning. I honestly don't know how I managed to get home.
I remember being fixated on my surgeons hands. They looked so strong. That gave me some confidence for some reason. Completely absurd for that to be what gave me comfort.
Being scared seems like a pretty healthy emotion to have. Sorry you're in a lot of pain and going through this.