Hello all. I am 4 months post op from decompression surgery and feel like I am on a physical and emotional rollercoaster. Some days I feel great and have very few symptoms, other days I feel like I am back to life presurgery. I try to get back active walking, bowling, etc but after I feel like my back, neck, and head are going to crumble. I heard dehydration may play a role in what I’m feeling but I’m not sure. Immediately following surgery I felt 85% symptom free but the more I try to get back to my lifestyle before surgery …the worse I feel. Anyone else feel similar 4+ months post op? Any suggestions on how to deal with the up and Down days?
Ok, get out of my life, lol. I am the same exact way!!! I had decompression surgery in July 2014. Initially I felt great, about the same as you…85-90% better. I was back to work two weeks after my surgery. About six weeks out I started feeling crappy again.
I also have tried getting back to a normal exercise regime…although not to what I was pre-op, INSANITY, figure skating and playing hockey are probably out of the picture for good :(. I have been able to consistently do a sit-ups/crunches/squats program that doesn’t aggravate anything too much. It’s no where near the intensity, but I feel like I’m doing something.
From all the research I’ve done and from talking with a couple folks on here, this is a fairly common experience. Decompression surgery isn’t curative, it just keeps things from getting worse. I sincerely hope you can get some advice from your neurosurgeon. But don’t be too discouraged if he/she gives you the cold shoulder…unfortunately I’ve learned that that happens as well. My GP has been awesome though and wrote me an RX for a mild muscle relaxer that does help.
Good luck!!!
Hello, my name is Robbie. I am 3 months post-op and am experiencing the very same symptoms you are. I have days where I live my life as though Chiari never existed. I am able to spend time with family, accomplish household things like laundry, etc. Then there are days I can barely get out of bed. I am doing in-home physical therapy which completely depletes every ounce of energy I have left. It. Takes me 2 days to recover from therapy and often wonder what’s the point. Emotionally I am completely tapped out, I am depressed, cry a lot and question if I did the riget thing by ever having surgery at all. So please know you are not alone. I’m know finding out. That there are additional neurological issues that I will be dealing with in the future. So at this point, all I can do is pray for strength and a positive attitude. Again, you are not alone in this battle called ChChiari. Sending prayers your way. God Bless.
I had decompression surgery in 2001. It took me at least 1 year to feel better. I think you will hear that from many. I would suggest you take it easy and get a lot of rest for the 1st year. One of the things that helped me most was getting weekly massages for the headaches, neck and shoulder pain. As I started feeling better, I went to every two weeks and then monthly. To this day, I still get monthly massages.
Surgery - especially neurological- takes a long time to heal! You need a year for your nerves to heal.
I was decompressed 6/12/14 and I feel as if I could have written your post almost word for word!
I have been taking Gabapentin, but still hurt most of the time. I need to lose thirty pounds and start exercising and hopefully I’ll feel better. I think I’ll try getting massages too. I went thru a stage of staying home in bed when I didn’t feel well and then feeling guilty for doing so. Yes, it’s an emotional roller coaster for sure!
Thanks so much for the responses. It is great to know that I am not alone. I think I just have to accept the fact that while I can get close one day my life may very well never be the same. I was very active as a hs teacher , cheer coach, youth leader, wife and mom and my body may not be able to handle that busy schedule anymore. Guess it is time to prioritize and eliminate somethings 
thanks for the prayers, will be praying for all of you as well.
February 27th I will be four months post-op...as to the dehydration, it was the one thing that came back on my PE bloodwork & was mentioned by my PA's nurse..."drink more fluids," as if that is always so easy to do. Some symptoms came back at the three month mark...surgeon did warn that some things might do that, then go away again, as nerves wake up & feel again...they "remember" the last things that they were doing & then reset...hard for us humans to not get upset over.
Some of the symptoms may be due to other conditions you had but didn't realise...like some of mine are due to tethered cord, which we didn't realise until after surgery, because it was "occluded" or hidden. I was just on the website from the UCLA spine department & second-opinioned myself....my ns is spot-on with his dx, based on some things I didn't know & matched symptoms there.
I'm sorry that you're having the same problems...my PA is also very supportive (and even sent a letter to a previous neurologist I saw & was treated disrespectfully, as to his lack of chiari understanding). Damaged nerves are tricky buggers and don't always do what we think they are going to do. Wishing you better luck in wrangling them up & training them back.
My 14 year old daughter is 9 weeks post-op, and still struggling with fatigue. Other symptoms have resolved (dizziness, nausea, weakness in the legs). Headaches are different and less intense (we were told to expect that, as her head is getting used to being re-plumbed). Some days she can go to school half day.
We are starting to look into the possibility that she has POTS... waiting for the appointment with the cardiologist next week. I can empathize. It is frustrating and depressing - I was hoping she would feel better by now.
I am sorry you are going through this. Although I am not physically suffering, it is hard to watch my daughter go through this. I am trying to focus on one step at a time so I don't get overwhelmed by the whole thing. Also trying to focus on the areas where we have control. I am going to encourage fluid intake today after reading these responses...
Good luck and hang in there :-)
Hello everyone, I am 9 wks post op, I would say I am about 85% better. I have awful muscle spasms in my neck that radiate towards my hip, hand, and my head. I had a f/u with my NS before I returned to work and he prescribed Tramadol (boy does that make me tired), but I am unable to take that at work, or I might fall asleep, so I have been using Excedrin Tension Headache. That gives little to no relief depending on the severity. I to have been a bit frustrated, but my NS has assured me that in time I will heal and feel normal.
Thank you for writing this and all the answers I was just about to write the same thing. I had a great recovery other than giving myself a csf leak from coughing because of course I got the flu. But I have had no symptoms for the whole recovery time but now I’m going on 2 weeks with constant headaches I feel pre surgical. I’m not taking any maintenance meds I 2 as on propranolol and amitriptyline before my surgery but haven’t since my surgery.