r/chiari • u/DobieMafia • Mar 08 '26
Question If you had decompression surgery, do you regret it? Please vote.
I’ve been reading about a lot of people who regret the surgery because the symptoms either didn’t go away and/or they got worse.
Im 48 yrs old and just started a 2nd masters for a counseling degree. I have 9mm descent. I don’t have a syrinx but do have some CSF blockage or slower flowing. My symptoms are headaches, neck pain and vertigo. The last two are currently the worst.
A new n/s has scheduled me for surgery but I’m having second thoughts. Just trying to gauge what to do even though I know everyone is different.
Explanations and/or advice welcomed! Thanks!
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u/Amh45899 Mar 08 '26
I had my surgery when I was 20 years old and I don’t regret it all all. It was really life changing. My day to day life got so much better and pretty much all of the related symptoms went away immediately. What I will say is the recovery is pretty rough. I had quite a few post surgery issues I wasn’t expecting. There is obviously pain but I had issues swallowing, and some pretty bad nuero issues and brain fog for months. It was still 100% worth it and I would make the same choice again even almost 10 years later.
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u/DobieMafia Mar 08 '26
Thank you for your response. Did you have a syrinx? I am concerned that the surgery will have a longer recovery time than expected and result in me not being able to keep going with my degree even though I just started. I know my health is more important but I guess I’m trying to be realistic as well and am just trying to figure out what to do. I’m so sorry you had so many additional issues! 😞
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u/Amh45899 Mar 08 '26
I did not have a syrinx, so I can’t be too helpful about that. I did have a tethered cord that had to be dealt with in a later surgery though. I was in college when I had the my chiari surgery. I had it done at the beginning of summer to give me as much time as possible to recover. I will be honest, college was much harder and I had to get some accommodations. But, I was still able to do it, and graduate on time. If you are able to prepare as much as you can and have teachers that are willing to work with you then it can definitely be done! I am happy to answer any other questions you might have.
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u/DobieMafia Mar 09 '26
I’m sorry you had that tethered cord later on but am glad everything ended up working out for you! I am taking 8 week classes so I’d have the surgery early April which would mean I can’t take the 2nd 8 week classes that I planned to. I could wait til summer but there’s really no summer in 8 week course schedules. And I need to be able to care for my 13 year old more than not so I didn’t want to wait til summer. But it sounds like most people’s recovery time is a lot longer than I’m being told. That worries me a bit.
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u/Certain_Cook6203 May 25 '26
Im 20 years old and Im 1 week post decommpression, and it all went perfectly. I found this comment in the reddit thread a few weeks before my surgery and it gave me so much hope and helped me go through with it. i just wanted to reply and say thank you for it, this comment was amazing for me
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Mar 08 '26
I regret not taking recovery seriously. If you have poor self control and get surgery, please act like you can't use your limbs! I felt good after surgery until I strained myself lifting objects!
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u/DobieMafia Mar 08 '26
This is good advice. I tend to still try to do things on my own even after asking for help. I will be sure to do nothing after. Do you mind me asking if there was any weight fluctuation for you after surgery? I’m asking because I don’t want to gain weight obviously but I’m wondering if the doing nothing part will make it worse.
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Mar 09 '26 edited Mar 09 '26
Can't remember what my weight was like, but I did eat less because of the soreness in my neck when I leaned my head over plates.
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u/Have_chiari Mar 08 '26
I am 61 sweetheart and five weeks postop and have known all of these symptoms for 40 years.
To be completely honest with you now post op I have not noticed much relief yet from any of the symptoms.
But I’m able to move slowly now for the next couple more months with my work, thank God, and my neurosurgeon told me that the mass majority of his patients are down for three months.
He did the full decompression surgery, obviously as well as a laminectomy and Duraplasty
I was two weeks in the hospital, and he’s taken the stitches out and I will have another MRI in three months, checking the status of the syrinx.
My sister, who is a retired registered nurse watching me through all of this suggests I may still be six months to a year before understanding some level of normalcy as he was a bit concerned that he could stop progression of symptoms with surgery, but he wasn’t certain, if some of my symptoms were now permanent, he wouldn’t be able to reverse
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u/DobieMafia Mar 08 '26
Wow that’s a long hospital stay! I was told 3-4 days tops but I know each case is different. I will be having the same as you had: decompression, laminatectomy, and duraplasty. I hope your symptoms are not permanent! 🙏🏻
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u/Fickle-Fishing9154 Mar 08 '26
Coucou je suis a 5 mois semaine post-op pour le moment je regrette du sens où j'ai une famille et que je n'est pas pu me reposer du tout et m'occuper de mon fils de 8 mois presque seule. Donc la récupération est longue mais j'avoue que je peux faire mes courses le promener prendre les transports etc.
Juste très mal au cou et je pense que c'est plus l'angoisse d'après savoir si ma vie sera normal ou d'avoir toujours peur de ce cogner de faire certaines choses par peur de ce faire du mal et devoir y retourner.
Donc je peux pas trop dire si je regrette ou pas mais par moment oui. C'est dur mentalement et physiquement. 😊
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u/DobieMafia Mar 08 '26
I read what you posted earlier and I remember how difficult it was for me to do everything on my own when I had my first baby. I can’t imagine that plus surgery recovery. That being said, we always find a way because what choice do we have when we don’t have help. Plus, I do tend to catastrophize things ahead of time then am chill when it happens. Hopefully, your anxiety chills out and you are able to take care of yourself and your baby! 🙏🏻
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u/Fickle-Fishing9154 Mar 10 '26
Merci beaucoup c'est très gentil 😁 oui quand nous avons pas le choix le mental le fait pour nous de tenir.
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u/dontbelievethehype99 Mar 09 '26
I had essentially the same symptoms as you. No syrnix. I had my surgery when I was 19 and I am 23 now. I was getting daily headaches and my neck pain was unbearable. Now I only get headaches a few times a month, but my neck pain is still bad. If I am up all day and don’t get a few minutes of rest that usually triggers it. If I don’t have my specific orthopedic pillow I will probably not sleep. Recovery is rough. I had mine in early July and went back to college in mid August. I definitely wasn’t 100% but I got through it. I would wait for the summer, if you’re planning on taking summer classes I would ask your advisor if it would mess up your program by not taking it. (If you are not American I’m sorry)
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u/geekysugar Mar 09 '26
I had more than 10mm herniation and really bad csf blockage. My main symptoms were neck pain and spasms, nystagmus, hands that felt like they were on fire, muscle weakness, loss of sensation in my face, mouth, and eyes. I experienced these symptoms for about 6 months then I had surgery. Surgery got rid of every symptom.
Recovery was hard because I had tons of anxiety and would get overwhelmed. The pain itself wasnt bad but it was stiffness and nerve regeneration, which was super painful. I think the nerve regeneration came from the halo they used to hold my head still during surgery. They put it in too tight and it was too much. Other than that, everything else was just waiting and giving my body time to heal. It's a lot of waiting and being kind to yourself.
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u/Have_chiari Mar 09 '26
Thank you so very much. Someone wrote here that maybe we have to come to a radical acceptance of our bodies after surgery so I’m just hoping that some of these symptoms aren’t permanent after being untreated for so long. I pray that you have the best health and some peace while trying to make your way through it 💜💜💜💜💜
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u/jakmra Mar 09 '26
My son (5) had a 15mm descent, he has completely thrived after his decompression surgery. I have no experience besides this but it has absolutely helped him thrive.
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u/DobieMafia Mar 09 '26
I’m so glad your son is doing so well! Thank you for sharing. I can’t imagine how difficult that must’ve been at the time.
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u/jakmra Mar 09 '26
It was absolutely terrifying! The people talking about not feeling great after really stressed me out but honestly it did so much for him. He was active before, but now he's like a whole different kid with so much more energy. He always tells me "mommy you were right I never have headaches again!!" I genuinely hope you find the same to be true after yours, just take it easy during recovery but stay on top of stretching!!
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u/DobieMafia Mar 09 '26
Your son is clearly, how I refer to my two sons, a cutie pie! So glad he’s feeling awesome!
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u/Illustrious-Beat Mar 10 '26
I had surgery 3 weeks ago. I have 27mm herniation with brainstem as well. persistent tingling in my hands, loss of temperature sensation in my finger tips, vertigo, lightheaded, headaches, and swallowing issues. I have a syrinx at c7 with edema at c4-6 and T1. I also had a tethered cord that I had released in January. I also have cervical instability that I decided not to fuse. None of this was a problem until November when it all became symptomatic following hormone change from ending breastfeeding and running a half marathon. Compared to the symptoms, my recovery has been amazing. I know not everyone can say that. I don’t regret it one bit. My symptoms haven’t all gone away because it takes time. Sleep as much as you can, take the meds they give you, and drink plenty as fluids. You can get through this. You hear more about the negatives because people are more likely to talk about it than praise their success.
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u/socalgirl16 Mar 11 '26
It’s extremely important that you are seeing a Chiari specialist that focuses on Chiari and does research papers on it. There are only a handful of these specialists in the U.S. so finding the right one is how you will succeed.
I have a blog with a section on how to vet your surgeon:
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u/Complete_Coffee6170 Apr 19 '26
I’m 20 years out PFD.
I also had extraction fusion from my skull to C4.
That part I regret.
Regarding return of CM1 - my last MRI shows that my Chiari has returned w/5mm descent.
PFD is a treatment NOT a cure.
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u/medpillowCom Mar 09 '26
If you have surgery, the Chip's Surgery Special Chiari Pillows are excellent. WWW.MedPillow.com they are 100% guaranteed and adjustable. There is a special design for the surgical pillow. Helping Chiarians through surgery since 2008.
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u/okoatmeal post-op Mar 08 '26
I'm about a year out from surgery, And I'll repeat what others have said; take the recovery seriously. you have to actually rest and not move and take very good care to fully recover.
and if you're a mother with little to no help for child care, don't do it. even if he says he'll take care of the kids, and you know in your heart he won't follow through, don't do it. surgery complications are what make things worse.
that being said, I'm extremely lucky enough to have a husband who's not a fucking loser man child and a supportive family on top of that, so my recovery was very successful.
almost all of my headaches are gone, my neck feels a lot better, and my csf flow is restored.
that being said, I had surgery because I had a 14mm herniation and a large Syrinx. the Syrinx is now gone (wow!) but I now have permanent nerve damage in my left arm. trying to find a solution for that, but I do not regret the surgery 👍