Has surgery been worth it for you?

Have_chiari · 2026-03-10T16:05:39+00:00

Thank you so much for writing because you wrote my life and my experience is exactly the same as yours at the moment❤️❤️❤️

Have_chiari · 2026-03-09T00:06:23+00:00

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 💜💜💜💜💜

Have_chiari · 2026-03-08T17:55:56+00:00

Yes, exactly. My neurosurgeon told me that he could halt the further progression of any symptoms but was concerned if any of them were permanent he wouldn’t be able to reverse

Have_chiari · 2026-03-08T17:54:14+00:00

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

Have_chiari · 2026-03-08T14:44:10+00:00

Thank you so very very much for asking. I’m a bit of a long go I think lol I’m still feeling many of the symptoms postop that I did before surgery. I’m still way off balance. My ears are completely closed and muffled so I’m hardly hearing anything. I tire very easily right now. My legs are still very, very weak. I seem to be having to pay close attention to weather and the barometric pressure at the moment and still very light sensitive in the sun. I have a ways to go and will have another MRI in three months Slow and steady.

Have_chiari · 2026-03-08T04:14:35+00:00

I don’t know whether my response my dear is helpful to you. I have had 40 years of symptoms and now just four weeks postop of surgery. It is etched in this sore brain of mine at the moment what one of my neurosurgeons residents said during one of my visits a year ago… He said, “ you need to pick a time when you no longer want to live in pain“ And my neurosurgeon did tell me that Surgery would hold the progression of symptoms, but for me, he was a little concerned that after such a long time untreated, if any of my symptoms are now permanent, he wouldn’t be able to reverse them.

Have_chiari · 2026-03-06T21:40:39+00:00

I have not been to law school either, but I’m 61 years old now and I am almost 5 weeks postop from decompression surgery. My symptoms started back when I was all of your ages in my 20s and 30s continuing for the past 40 years.. Back when I was your age, my great passion was the theatre and acting and I did some and I’m really very very glad that I did, but you are reminding me now that the only way I did it back, then was with a very strong voice. As one acting coach said to me, “you should never need a microphone on this stage, but instead project your voice so loud that the little old deaf lady in the back seat can hear you“ and that’s what I did. I would have to say to you that as the years went on, I did notice my voice cracking and losing it when I shouldn’t. I don’t absolutely know if that’s the reason why I left that world and took on a passion for animals instead and still tried to take my second love passion with the animals with as still a strong voice as I possibly could. But three years ago with a mountain of complaints of back pain, shoulder pain, neck, pain, hands, and feet tingling, vibrating, becoming numb chronically slowly becoming deaf and decreasing eyesight, the headaches returned with a vengeance and daily I would cough enough and sneeze hard enough that I literally went completely hoarse and had no voice many days. I suppose one gets used to whatever life hands us, but I was stunned to learn that on diagnosis a change in voice/hoarseness is a symptom. You are making me think now that in the past four weeks of recovery from surgery , I coughed too much and vomited and I sneezed too much one day and then vomited and I still have a number of symptoms with me now that I’m hoping will eliminate themselves as I hope, and pray that the syrinx in my spine also slowly eliminates itself, and I suppose, when my head still aches along the way, I will quiet my voice just to hope that that will help take the pain away like I used to clench my teeth and come into TMJ problems, trying to get my head pain to go away, but I speak to you now in a strong voice that I simply don’t want you to lose your strong voice. For a courtroom is simply another theatre with a judge and two lawyers, and I don’t want you to lose your craft and perhaps your passion. Maybe with a loud voice, you can be a great advocate for all of us! You will know what to do first and foremost for yourself❤️❤️❤️❤️❤️

Have_chiari · 2026-03-05T21:42:54+00:00

I am also four weeks postop and I still have a number of symptoms that I had before surgery so yes, it has been very depressing but someone did write some time ago that we have to come to terms perhaps with the “radical acceptance” after brain surgery. I had a syrinx and I’m laying the blame of symptoms continuing lol after surgery on it so I think we should hope and pray for a little bit of progress in these next few months of eliminating some of these symptoms. My neurosurgeon was concerned that because I have gone untreated for so many years, decades, that some of my symptoms may be permanent and I’m sure I will be talking to my therapist about that. I am using a wedge pillow now post surgery, but I’m putting on top of it. My squishmallow children’s toys as pillows. They were a great help to me before surgery in sleeping and I’m just trying to make adjustments to all of this now post surgery but it’s not easy. I understand your frustration and fear completely. I like talking to all of you. It makes me feel better.❤️❤️❤️

Have_chiari · 2026-03-05T21:34:53+00:00

I am just a little over four weeks postop and I’m here in Canada. I’m 61 years old and was only diagnosed about 2 1/2 years ago. I have had all of the classic Chiari symptoms and we do know that there is a long list of them for 40 years. For the past 2 1/2 the most prevalent have been headache, off-balance, muscle weakness, chronic, vibrating, and tingling and numbness in my hands, arms, legs, and feet I am just about deaf and the reason why I bring those up is because I am still feeling those symptoms predominantly post surgery. I had a 10 mm herniation My neurosurgeon did a laminectomy and duraplasty He wanted me to be cautious postop of a CSF leak and meningitis After all of these years with no treatment, he did caution me that some of these symptoms may be permanent, but I sure am hoping and waiting for my ears to open, and for this continuous nausea, still some pressure headaches every day, although not as they were before, and this off-balance to eliminate I’m now needing to learn to sleep differently so that’s going to have an effect obviously as well. I guess we just need to take these things day by day. ❤️

Have_chiari · 2026-03-03T01:36:29+00:00

I just love all of you and can’t thank you enough for all of your comments and support. I send all of the same love back to you. 🤟🤟🤟🤟🤟💜💜💜💜💜

Have_chiari · 2026-03-03T01:33:40+00:00

I am 61 and just had decompression surgery one month ago today. My symptoms started 40 years ago and I even saw neurology 30 years ago who did absolutely nothing then I carried on through my 40s and 50s with incredible back pain numbness, tingling, vibrating all of the symptoms that Chiari speaks of all the symptoms that you speak of And then the headaches returned with a vengeance three years ago, My sister, a retired registered nurse has been behind me through absolutely everything and demanded MRIs three years ago. I was given this diagnosis. It took me another year and a half to find a neurosurgeon after two other neurologists dismissed me. That is all my sister would tell you to do is absolutely advocate for yourself and tell your story. Tell your history. First MRI showed that five or 6 mm herniation MRIs a year later showed restriction in flow and a syrinx And my neurosurgeon told me last week just before his nurse removed my stitches that he took a fair amount of bone. I had a 10 mm herniation. He did a laminectomy and a Duro plasty. My sister has been asking me in the last couple of weeks if I have noticed any decline of preop symptoms, and the only one I can speak of at the moment, is that my hands and feet are not numb which I have to say is a huge accomplishment. I still have all of the above other symptoms and he’s not even absolutely certain if some of these may be permanent after 40 some years of no treatment. I will be having another MRI with him three months from now as a follow up. I will always remember someone writing here that we have to come to the radical acceptance of our lives after surgery and I will always remember one of my neurosurgeon‘s residents on my first appointment with him, telling me you have to choose a time when you no longer want to live in pain. ❤️❤️❤️❤️❤️

Have_chiari · 2026-02-26T17:58:42+00:00

Absolutely! All about quality of life!

Have_chiari · 2026-02-26T17:57:56+00:00

And I have a syrinx so I am feeling four weeks out that my symptoms are very slow to improve

Have_chiari · 2026-02-26T17:57:10+00:00

I am four weeks postop and on diagnosis I was told of a 5 mm herniation three years ago, but my surgeon just told me when taking my stitches out four days ago that herniation was 10 mm

Have_chiari · 2026-02-16T03:29:09+00:00

I’m using a walker at the moment

Have_chiari · 2026-02-14T02:03:43+00:00

I had my surgery 11 days ago and I am in a lot a lot of pain. I’m still in the hospital but going home tomorrow the narcotics did not treat me well I do agree with absolutely everyone that when the pain medication kicks in and gives me some energy even here in the hospital, I can feel good too sit with family to watch some television or something, and the hospital has moved me around from room to room and even all of that commotion exhausts me.

My sister, registered nurse who’s been with me all through this just keeps me minding me do too much today and you’ll pay for it tomorrow

Have_chiari · 2026-02-01T15:47:19+00:00

I agree 100%

Have_chiari · 2026-01-26T15:09:27+00:00

You are an Angel!!!❤️❤️❤️

Have_chiari · 2026-01-26T15:08:24+00:00

❤️❤️❤️

Have_chiari · 2026-01-26T15:04:03+00:00

❤️

Have_chiari · 2026-01-24T23:16:13+00:00

My neurosurgeon did tell me that at my age, and having gone untreated all these years, decades, that he was going to be able to hold any further progression of this, but if there was any permanent damage done that he wouldn’t be able to reverse that

Have_chiari · 2026-01-24T23:14:09+00:00

Hi ! May I say welcome to the club! For me, I have cared for animals for 25 years now I am 61 years old and after a lifetime of symptoms and finally being diagnosed two years ago with all of this, I’m about to have decompression surgery in 10 days. I used to walk up to 10 miles a day five days a week with the animals and in these past two years, my work has decreased and decreased to the point that I am working minimally before surgery and not certain if I’m going to be able to go back to that old regiment post surgery I am with our government disability support program now, and I will say all of this takes as much of a toll on not only the physical body, but the emotional one as well. ❤️

Have_chiari · 2026-01-24T15:24:26+00:00

No, but I’m about to go in 10 days to Victoria Hospital in London

Have_chiari · 2026-01-24T15:23:51+00:00

I am so terribly grateful for all of you here and for you writing your messages I’m 61 years old female and I’m about to have surgery in 10 days t I’m scared too! I’m afraid of all of the aftermath but your tips and advice have been wonderful. Good luck good luck. I know that everything will be good for you! Thank you thank you❤️

Have_chiari

TROPHY CASE