Hi...
If you had decompression and are 1 plus yrs post up...can you share with us how you are doing today..
Thanks..
I am 5 years post op..CM..no SM...I am better than I was before the surgery...I will reply , in further detail on this topic later...kids bellowing for me..wonder what is up!!!LOL
Thanks guys and dolls!
Lori
So glad to read these updates - it gives me great hope - I'm only 8 weeks post op - I try to stay positive and believe my surgery was a good thing most days. I had to have the surgery quickly because the Chiari was stopping my breathing when I tried to sleep. But on the days when I feel like I'll never be well again it is nice to hear some success stories and to know we are no alone in our fight.
Thanks & God Bless
I am 20 years post op....I had the decompression surgery and had a syrinx put in my spine at t7...I am happy to say that I am good. It took a little bit to have the nerve pain go away..still get it maybe once a year near the surgery area on my back...also get numbness and tingling maybe once a year...no headaches. I do wonder at times if certain symptoms I have are from my Chiari or something else....overall I am great! I do yoga everyday, work, and have a full life.
KB said:
So glad to read these updates - it gives me great hope - I'm only 8 weeks post op - I try to stay positive and believe my surgery was a good thing most days. I had to have the surgery quickly because the Chiari was stopping my breathing when I tried to sleep. But on the days when I feel like I'll never be well again it is nice to hear some success stories and to know we are no alone in our fight.
Thanks & God Bless
I’m 17 months post op. Surgery literally saved my life so I’m thankful for that, but I’m still in lots of pain ALL THE TIME. But I’ve learned to avoid triggers that increase the pain and am trying to live a full life. I have a beautiful wife and 2 1/2 year old girl and just welcomed my second daughter into the family Friday morning. My wife and baby came home today and are doing great. So I have a lot to be thankful for and a lot that keeps me strong and keeps me going. I’m still not back to work, though, and won’t be going back to construction in my previous capacity.
I’m almost 2 years post op. I am great today, still some headaches and dizziness. But compared to what I was prior to surgery, it’s amazing. I haven’t had any days off work since I came back from my surgery! And to think I almost gave up work prior to surgery.
Almost 3 years post-op, back to playing tennis!!!have mild pain occasionally, but nothing like before! Life is good. Got my life back:)
My daughter has had 2 surgerys in 24 months. She is back at school and does have headaches and back pain several times a week. The surgery was needed both times due to all the pain she was having. Honesty we are learning to live with this monster. More MRIs next month.
Hello, I had my decompression in 1998, so I am now 15 years post-op. I am doing well. I was much better after the surgery, and have not noticed my symptoms returning. I had CM, or as it was called then- ACM, with SM.
Kent
I am 2 years and 3 months post op. Before surgery I was having non-stop headaches, Dizziness, trouble swallowing, speech problems, nausea, and occasional black outs. Since my surgery I’ve had a roller coaster of a time. I’ve. Thought my chiari was back, I’ve been better than I ever have been. It just depends on the day. I am still 100% better than I was before.
I returned to school and work just two months after my surgery. I wouldn’t suggest it. Lol but I’ve been working though the changes my body goes though ever since.
My son who was 16 months at the time had his 1st decompression surgery, he also had a syrinx. His surgery was a must, he would have died without it. He had a couple lumbar drains and got meningitis and almost died from that and a revision was done. Eight months later he had a second decompression surgery as the syrinx had moved instead of disappearing. He again got meningitis not as bad this time and more lumbar drains and another revision. Hydrocephalus did not go away fast enough so he had a vp shunt placed. The day after it was placed he puked, everyday, sometimes 3x a day for an entire year. He would also have "stop breathing spells and seizures". After a year the shunt was removed finally at my insistence. The puking has slowed down to just once a week or so. Sometimes its random during the day, or he'll wake up out of his sleep screaming in pain and then puke. Does anyone else have this lovely side effect? When he gets upset and cries he'll usually puke. Also, I've noticed that if he is to tired out he'll puke. I'm wondering if this has anything to do with the flow of CS fluid -like to much like when he had the shunt in? Just a thought.. His gag reflex is super hyper and its tough just to brush his teeth. With all of this negative being said, he is doing amazing. You'd never know anything was wrong with him. He's got tons of curly hair that hide all of his scars, he goes to PT once a week and is like a regular 3 year old boy. His energy level seems to be back to what should be normal for his age. He has an MRI scheduled for the end of this month and I hoping and praying that syrinx has stayed away and that his ventricles are still small and no scar tissue!
Ivy - 3.5 yrs post op. Into 4th surgery this a.m. due to cyst from 4th ventricle to medulla oblongata turning into another syrinx from c1 through T2. not doing so well. I pray you are one of the lucky ones.
5 years post-op, CM no SM, also fused form c1-c5 for instability. I was doing much better for about four years, but now am experiencing symptoms again. Not as bad yet as before my surgery, but they seem to be worsening.
Ivy I'm so sorry to hear that. I'll praying that this is your last surgery and that you have a quick recovery and will finally feel good!
I am one year and a few days post-op. I have only had one headache in the past year and, for that, I am very grateful. The biggest post-op struggle has been sensory overload - especially light and sound sensitivity. The latter, hyperacousis, surfaces some significant anxiety. I still get an occasional muscle spasm in my neck but nothing ice will not cure. My cognitive abilities have still not all come back to full speed but I hope they will some day. Given all of that, physically, I am doing really well. The most difficult thing has been re-integrating into my life after missing three years due to debilitating illness. Unfortunately, the universe did not stop unfolding while I was sick. Hence, I re-entered a world very different than the one that I left. I guess that I have experienced a great deal of grief at the loss in conjunction with a great deal of gratitude for the healing. With all of that said, I feel a little bit like a beaten dog at a shelter - weary of what might come next. Luckily, at least physically, nothing really has!
I am almost 9 years post op. Before my surgery my symptoms were so bad that I could barely function. I had almost no spinal fluid flow around my brain at that point. After surgery, I still only have half the amount of fluid flow that I should and still experience symptoms, but not as bad as before. I found that stress, diet, and physical activity have a lot to do with my symptoms. I started doing yoga last year and it has helped so much. Not eating gluten or sugar has also helped decrease some of my symptoms.
I had ended up having 2 surgeries. The first one was a decompression, and the second was an emergency surgery because the durra patch that was put in during my first surgery had a hole in it. So in my second surgery, the doctor re-patched the patch. Has this happened to anyone else? I always wonder if at some point the patch will start to leak again?
Good luck Ivy! Oh my goodness we will pray for you! I am going to respond to each of you…
Toni! Your poor baby! The throwing up is a symptom of just chiari (and post op) but many just get nauseous if anything. We completely eliminated all dairy (even trace amounts in cheese popcorn) because the gag reflex is so great and any phlegm or trying to take medicine or vitamin just comes right up with vomit, and yes, brushing teeth stinks 
Amber yes, better than before but depends on the day for sure. I wouldn’t recommend much right after surgery. I think going back to sports six weeks after surgery is what caused things to not heal as well as they might have for our son and cause a csf leak but idk. He doesn’t do soccer or participate in gym right now at all. There’s no way.
NWMocha, do you remember how long after surgery you felt better? Like Amber said, it’s a roller coaster. It is 1 year Nd 9 mos post op (2nd surgery) for our now 8 year Old and we are wondering if he will just keep improving or if this is it, or if something else is just wrong, whenever he really suffers.
hunter1 poor baby:( our son had his two surgeries in 11 months, the spine pain he had daily for 4.5 months was sickening but we got him a custom cut memory foam seat cushion and a back cushion (can not sit on hard surface like counter or school chair! And must have a back support). Deep penetrating heating pad called Thermi Paq helps. Headaches not as fixable except no PE and no running and recline the seat in the car, lots of water and tea (caffeine) help some. We call it the bear of chiari but monster sounds about right, we also need to schedule the MRI which I hate but know has to be done, we will keep you guys in our prayers!
Fran, good for you! Our 8 year old son loves tennis and can actually play okay sometimes without issue (sometimes not) we are hopeful reading your story that he’ll get back to the court soon!
Angie that’s wonderful, was is a progressive improvement or did you notice a great improvement right after surgery, like after a few weeks of healing? I feel like our son noticed immediate relief from headaches even in he the icu after the first surgery but the 2nd he thought they did something wrong and that the surgery didn’t work. He did not recover as well but with time the bad times seem to be less frequent. That said, he his home and very upset not to be in school, white as a sheet with horrible neck pain that’s going on two weeks all because he rode his scooter one weekend and had a nasty head cold? Or is it something more? That’s what we never know when the pain like this assaults.
dizzyE you got it! Avoid the triggers and count your blessings! Congratulations on the baby and your beautiful family. I know not being in school is upsetting for our son so I know it can’t be easy with not being able to work (my husbands a carpenter and it’s hard to imagine not being able to do what you want or know you are able to do if not for your body betraying you with pain and limitations but in time, it will all work out!
hilly hi, where did you have the nerve pain? Our son has pain in the soles of his feet daily since his second surgery, he can not be without socks on, even at the beach! Which makes his dizzy anyway, he takes them off for a shower and puts them right back on! We often wonder whether there is more to Gavin’s suffering than chiari and celiac plus being dairy free (he had mono and he had Lyme that was not diagnosed in time) so that’s enough but still we wonder if we’re not missing something or if it’s like hunter1 said just the monster that is chiari,
KB our son could not breathe during the night and even in the middle of the day, it was so crazy before his second surgery we feared sleep ourselves not knowing how we’d find him. He still has central sleep apnea (did you get a sleep study?) but the surgery fixed the obstructive apnea by shrinking up 23 mm herniated tonsils up 
and removing an inch of thick obstructive scar tissue “fighting for space in there.” I don’t remember him being so dizzy and nauseous before the surgery and feel it came after surgical intervention but not 100% certain. I highly recommend doing as little movement as possible and drinking plenty of fluids during these weeks as your body heals, I feel like our ns removed so much bone to “make room” that now the chiari institute thinks he needs cranio spinal fusion for basilar invagination and his brain stem now at almost a right angle. We say, just say no to surgery (for Gavin our son) if at all possible!
Becki well said, haven’t healed as nicely as we’d like but thankful for the progress he’s made and like most people the surgery was a life saving must so it is what it is.
Emmaline you always have words of inspiration and explain living with chiari well. We are so grateful that our son loves school as much as you love your work and that definitely helps distract from pain often times!
Lori thanks for your post, hope the kids are ok, lol! Hope you are doing well!
You all sound like us, not 100% but 100% better! I find that ill list all that’s bothering our son and then say besides that he’s doing great! Lol just happy to be alive and grateful for any pain free or light pain days.
Oops somehow there are more responses as I was writing my response! Sorry if I missed anyone. Emmaline I don’t know what you mean about the herniation having to heal? Ivory girl I forgot about the dural patch, hmm. Now I am wondering. Our son had two pockets of fluid, one they called a psuedomeningoceles but he has had debilitating neck pain back by his incision and the area has a puffed out part. He knows he’s not allowed on the trampoline but his ball went under so he asked the kids to stop bouncing when wen under to get his ball and one big teenager decided to be cute and jumped, landing on our son’s head forcing his chin to hit his chest. Pit hurt a day or two then back to “regular chiari pain” bite after a more active than usual weekend, he’s been suffering more than we have seen in a while and now needs MRI. To answer, yes it happens, what symptoms did you have that made you need emergency surgery?
Hi "mom",
I was 28 years old when I was diagnosed and had my surgery, and had been noticing symptoms for at least 6 years, and maybe back to my childhood, before that. I ended up with a surgery complication/mistake of spinal meningitis after my surgery. I was back in the hospital a few weeks after my surgery and then on home IV for two weeks after that. That all makes it hard to say when I felt relieved of my symptoms. I was back to work 6 weeks after my surgery. It seems like I felt better once the meningitis was taken care of, and I don't remember any more significant symptoms after I went back to work. I feel like the main improvement was in the few weeks after surgery.
I also had gag reflex issues, like you said brushing teeth was hard. It seems like that symptom has slowly lessened over time. It is not much of an issue anymore, except sometimes when I have a cold. I had both obstructive and central sleep apneas in my sleep study about 3 years before my decompression. They treated the obstructive by removing my uvula, tonsils and trimmed my soft palette. This lessened the obstructive dramatically, and helped the central. The central apneas were still high. I suspect my decompression helped those, but I never had another sleep study to check.
I would not say I am completely symptom free at this point, but it does not affect my daily life significantly. Balance is not perfect, walking on a curb is tough. I don't feel like amusement park rides that start, stop and turn quickly are a comfortable place for me. I probably get dizzy easier than most people. I don't think my headaches are more common or severe than the average person. I have some loss of sensitivity in some areas, especially my lower face/chin area. Neck mobility is not perfect- I can't turn my head as far as most people. It took some adjustment for driving, especially since I work as an automotive technician.
I think it is important to keep a positive attitude. It is amazing what our minds can help us overcome. Sorry to hear of your sons continued symptoms. I wish him and you the best. Make sure you are taking care of yourself. The daily struggle has a way of wearing the caregivers down. Make sure you are taking breaks for yourself.
Kent