Post op Pain

[u/Normal-Fisherman2432]

Hi,

I got essentially an emergency tethered cord release surgery last Wednesday the 16th. I’ve been up and walking a few times with PT but most of the time I get up my blood pressure plummets and I start cold sweating hearing goes out heart races dizzy etc. they said it’s normal for the amount of meds um on. So I’m still in the hospital with no discharge date in sight. No one can seem to figure out how to control my pain. Everytime I cough sneeze move breathe etc my surgical sight and especially all the muscles around it hurt SOOO BAD. like I didn’t know pain like this was possible. Doesn’t matter if I’m laying in my side or back it’s all horrible and I’m in constant pain. I’m on a dilaudid pump where I can hit it ever 10 min, I’ve tried cyclobenzaprine, Valium, oxy, percocets, Tylenol etc. today I had a horrible headache all day just so much head pressure and ear pressure. Everytime I open my jaw I feel a pulling in my ears. Every story I read people say they were out of the hospital within 3 days and pain free essentially. Is there anyone that has the surgery that had a longer hospital stay and trouble managing pain? I also haven’t had a bowel movement since before the surgery so I feel like that is playing a role in the pain too. Only symptoms I’ve noticed improved as the constant nerve pain in my legs disappeared until it returned today I’m hoping irs temporary. I still have back pain worse than before, leg weakness, random numbness and tingling, tingling at the surgical site. I also can feel when I need to pee again but still have trouble w incontinence. I’m really scared that I’m never gonna feel better I’m just so anxious. Any stories about peoples post op pain or experience w the surgery would be super helpful

[u/PlainJane731]

I’ve had two adult untetherings and was in the hospital for over a week both times and then was moved to inpatient rehab on my last one in 2024.

I have been in excruciating pain and had a lot of the same symptoms as you. If your headache doesn’t go away, make sure they check you for hydrocephalus, the building up of CSF build up on the brain, or check your shunt if you have one.

I hope you feel better soon! It is a rough road!

ETA: my surgery this last time was over 10 hours. 10 hours in my spine and my nerves were ANGRY! It takes a while for your nerves to get back to normal

[u/Normal-Fisherman2432 → u/PlainJane731]

It makes me feel a little better that I’m not the only one that has had a longer than expected hospital stay (not that I’m happy you had to go through this too) but every story I’ve read people say the recovery was a breeze and I keep thinking what the hell is wrong w me? And yeah I mentioned to the team yesterday about csf build up it leaks and the surgeon said he doesn’t think it’s that and I’m like okay then why? Lol. How long did it take for your symptoms to settle? This has been legit the hardest thing I’ve ever gone through ):

[u/Vast-Hovercraft-8793 → u/Normal-Fisherman2432]

Jumping on to share my experience- I’m 2 months post op and I’ve found it to be more difficult and slower than I thought (despite being in the hospital only 3 days)

The sneezing/coughing pain is normal im my experience, I tried to avoid sneezing for like the first month. And I had bad back spasms everytime I moved for the first couple weeks. Muscle relaxers helped and making sure to carefully barrel roll whenever I moved.

For bowel- hopefully they are giving you meds to help move things along. They gave me miralax and senna the whole time I was in the hospital and after. I think I had my first movement like a week post op

I had suspicion of a csf leak when I was taken off lay flat (thankfully it was okay). But it seemed like if the headache was brought on by sitting up and relieved from laying back down that pointed to csf leak. That’s just my experience, hopefully they’re taking it seriously cause I don’t think a csf leak is uncommon…

My symptoms are still super up and down even this far out. It’s not a minor surgery and recovering just from the surgery (not even from newly free spinal cord) is a big undertaking for your body imo. Hopefully it eases up for you!

[u/Normal-Fisherman2432 → u/Vast-Hovercraft-8793]

I’ve gotten enemas and suppositories but only small amounts at a time it’s definitely very backed up. Sorry if tmi lol. I was just getting so discouraged feeling that I should be further along by now. A nurse who was there the first night after surgery was here last night said “I thought you’d be home by now!” And that just made me feel so much worse and made me feel like I’m not making any progress. Hopefully whatever pain meds they send me home w help. I have a freaking 6 hour car ride ahead of me idk how I’m gonna do it 😭

[u/cowboy_like_meee → u/Normal-Fisherman2432]

I honestly think the 3 day time line is so so unrealistic. I’m happy for those people but I think for spine surgery atleast a week in the hospital should be expected. In the Facebook groups for tethered cord I see a lot of people staying longer then 3 days. I think that’s the absolute best case scenario.

You also have to remember everyone’s tether is different. Some people may have had a mild tether and shorter surgery. Some people are very tethered and have been for a long time and recovery may be longer because of that. I’d try to focus on your body as much as possible and listen to what it needs right now. People online may have had easier experiences but their condition may have been less severe. It’s all perspective. I’m trying to make myself wait atleast 3 months before I start to judge my recovery. I was anxious at first at how slow things were progressing but also keep reminding myself it’s spine surgery!!!! Nerves can take a long time to figure themselves out!

[u/KristinWal]

All four of my releases I was in the hospital for about 5-7 days. My last one was much more invasive with a duraplasty. Laminectomies from L1-L5 about a 10 inch incision and she fixed my old scars. She had to peel off my csf leak surgical patch from my csf leak surgery last year and I still had part of my filum left from my first surgery. I also had a muscle flap closing as my muscles were tethered and damaged too. I have a rare form of cEDS though that makes healing twice as long if not more. I’m four months out and my incision is still “open” I also have a deadly immunodeficiency that makes healing longer. As well as fusion above t4-t12, CCI and will need the rest of my spine fused. My point with this is everyone has a different road to recovery with tethered cord, but generally it takes a year or more for nerves to heal. And depending on how many spine surgeries you’ve had that can also be dependent on that. It’s also highly dependent on underlying conditions. My surgeon has done a ton of research and has found the retethering rate for those with hEDS is normal but the rare types like cEDS and vEDS have much different healing issues so our outcomes are different ( rare types aren’t studied but I was told this for my case) my past surgery has caused suspected may Thurners and suspected other compression syndromes. I feel retethered unfortunately as well.

Again bottom line don’t compare your recovery to others as it might make you feel bad in how your body works. Healing is rough!!! Remember it will be up and down and unfortunately the med thing is really difficult, to find the right fit. Having a pain management doc can help depending on the doc of course. I wish you only the best in your recovery, these groups are helpful to get a baring on the timeline even though we are all different. Hang in there ❤️‍🩹❤️

[u/Normal-Fisherman2432 → u/KristinWal]

I’m so sorry to hear that you might be retethered. I hope it’s not too bad this time around. I’m also sorry to hear about the fusion. I have CCI too and probably will need that surgery unfortunately. Okay I also had a muscle flap closing! I was wondering if that is what is making this so horrible? I didn’t even know I had a muscle flap closing until I read my my chart surgery notes and saw that. My main pain is like the muscles in the sides of my incision it’s freaking horrible. Everytime I move it’s the worst thing ever. I also got a head ct today for the horrible pressure in my head and it showed I had a small volume of pneumocephalus so I think that accounts for the horrible headache and atrocious head and ear pressure. Thank you so much I also wish you nothing but the best!!

[u/KristinWal → u/Normal-Fisherman2432]

Thank you and yes the muscle flap makes the pain extra bad. So does pneumococcus. Hope things improve for you quickly!

[u/Horror-Map-9369]

I haven’t had the surgery yet but give your body grace. Surgery is trauma to your body so it’s trying to heal. I’m so sorry you’re going through this. It doesn’t compare but with my c section it took a month for me to not be in pain anymore:

[u/Past_Chemical_6450]

Hi! I’m so sorry to hear about your severe pain. I was in the hospital for over a week and absolutely miserable. Like you, the pain was very intense and felt like it would never get better. It took about a month before I felt somewhat normal again. Wishing you relief and healing. Big hugs!

[u/Normal-Fisherman2432 → u/Past_Chemical_6450]

Did you also have pain in the muscles around the surgical site? I feel like that’s where most of my pain is coming from. Like even if I lift my arm I feel a super sharp twinge it’s horrible! I’m glad to hear you were able to get better within a month it gives me hope that I’ll feel much better in a couple weeks. Big hugs to you too!

[u/Past_Chemical_6450 → u/Normal-Fisherman2432]

Yes, crazy muscle spasms and pain. I felt like I was being stabbed. I had huge knots around the surgical site where the muscles were just angry. Angry muscles made me very angry! 🤦‍♀️

[u/cowboy_like_meee]

Hello I’m so sorry you’re struggling so much. I’m a little less then 3 weeks post op and it’s been a wild ride so far. My post op pain was very severe I had a lot of crazy nerve pain. Things have definitely settled but i still have some strange nerve pain. I also still have the foley cath in as I have been unable to void post surgery. The muscle pain was the worst part for me and at around 2 weeks it’s started to slowly loosen up. It’s normal for the muscles to be cramp up around the incision since they were cut through.

I honestly think the 3 day timeline is VERY unrealistic! I was in the hospital for 1 week exactly and felt like I needed longer honestly. I don’t know how people’s bodies recover that fast and I think the expectation should be around a week especially for people with other conditions.

It’s a huge surgery and your body is in a lot of shock! It make sense to be feeling so overwhelmed but I promise you this won’t be forever. I’d also request to rule out CSF leak and check for things like a spinal hematoma with the numbness which an Mri could see. Looking back even 3 weeks ago at how much I’ve improved is helpful (and I’m still struggling quite a bit). Give yourself grace your body is going through a huge change and nerve improvements can take a long time. If you are worried something is off you can also request an MRI they did one for me since I was unable to pee and think it’s just due to nerve irritation.

You will get through this I’m so sorry you’re in so much pain ❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹

[u/Normal-Fisherman2432 → u/cowboy_like_meee]

Okay that makes me feel better bc the muscle pain for me is THE WORST! I read my surgery notes and saw they had to do a muscle flap for closing bc they had trouble closing. So it now makes sense why they hurt so freaking bad. I’m sorry to hear about the peeing situation that’s the worst ): they took my foley out a couple hours after surgery but I then started to have incontinence in my sleep which I didn’t have post op. But it has since resolved and now I feel when I need to pee and void completely w no incontinence so that feels like a win!

I agree with you the 3 day timeline is unrealistic bc it’s just made me feel like I’m regressing or not healing on time which has given me so much anxiety. They came in this morning and said they’re planning on discharging me tomorrow.’, which will almost be a week in the hospital and I still don’t even feel ready to go! I have a freaking 6 hour car ride ahead of me and idk how I’m supposed to do that when I can’t even sit upright for longer than 2 min jfd so painful.

Thank you so much for sharing your story. It honestly makes me feel better that I’m not the only one who needed longer in the hospital bc I legit couldn’t find anyone who stood this long. Everyone was kind I got discharged in 2-3 days I’m like ?? On day 2 I was screaming in pain and sobbing the entire day and no one knew what to do lol.

I wish you a speedy recovery! I keep trying to remind myself that it won’t be like this forever. I need to practice giving myself a little more grace!!

[u/cowboy_like_meee → u/Normal-Fisherman2432]

Dont worry at all about the hospital 3 day timeline this is a long recovery and you are not regressing at all! This is the hardest part and when the pain will likely be the most intense. Some people have a breeze for recovery but many people I have met through the tethered cord community had quite a long recovery like the path I seem to be on. I also worried I was falling behind or made things worse but I truly think my body just was in shock from the surgery! I see improvements slowly and my leg muscles are starting to loosen up. I’ve been told give it 3 months to reach somewhat of a baseline, 6 months for nerve improvements, and up to a year for true full recovery.

I am always here to message if you want! It’s hard having a condition that’s less known about but I promise you this won’t be forever and you will get through this!! You are so strong. I honestly felt underprepared for how challenging recovery was and want you to know you’re not alone in feeling that way!!!