7 months on from decompression surgery

Hi Luna1989

I had my decompression surgery 2 days short of a year ago. The main problems being occipital headaches, tiredness, memory & cognitive issues.

I was 50 when I had the op and pretty active with cricket, cycling and a lot of dog walking, as well as working in a very competitive sales environment in a financial information firm in London.

I had very high hopes for the symptoms going away at a stroke, bit that was not to be. I have been back to the NS and then referred on to a Neurologist for a heap more tests as apparently everything is sorted physically. Unfortunately it doesn't feel that way to me.

The person who has had biggest impact on recovery has been my osteopath, who has treated my wife for a number of years. He has also educated me on what happens (layman's terms only) with blood vessels at back of head and how I was out of balance in some areas post surgery. The guy is a marvel.

I still get headaches, but I have learnt to manage with them, but thankfully at a lower level than I used to experience. I'm still tired, but less so than before.

More than anything I am finding ways to cope mentally, with increased resilience, that comes from within. I have started cycling again, and a bit of cricket

And recently I returned from a holiday in south of France and managed to share the driving for the 800 mile car journey.

I can still feel crap. Just less crap and less constant than I used to be.

You have to give yourself the chance to improve, and patience is key. Even with limited progress I found it important to look for what I could do to get a sense of personal achievement, even if at a lower level than the old me. I'm much more open minded now as to what that may mean. You are the best person to to define that, otherwise it would be easy to become another statistic with depression etc.

Good luck in your quest.

My name is Sierra and I’m 18. I had a decompression surgery when I was 15, sophomore year of high school, and I found the same results as you. 

I’ll just tell you my medical experience because it is what I think would help you the most. After the unpromising results of the decompression surgery, I became a patient with a specialist in Long Island named Dr. Bolognese. He found that my decompression surgery made no impact on the Chiari, as it often doesn’t. That is likely and unfortunately what happened to you. Many people on this forum and those who have Chiari in general say once you are a Chiarian, you are a chiarian for life. This is obviously not what you want to hear and hey maybe you will be a lucky one and your symptoms just take time to subside post-surgery, but more likely is that the decompression surgery didn’t help you. 

If the symptoms become really bad, like you can hardly take care of yourself and get to work/school on a daily basis there is another more serious surgical option called cervical fusion surgery, I believe,  that is supposed to decrease the symptom intensity. However, that is only if you’re Chiari is reeeeally terrible. 

As far as the depression goes, I know it is really hard to stay on the sidelines and not participate as much in life, ESPECIALLY when you are young and everyone wants to be adventurous. That feeling is also one that brought me to this forum at 15 y.o. Gradually tho, you learn to live with Chiari instead of constantly fighting against it. For example, my headaches are terrible when I’m socializing and laughing with friends so I’ve learned to stay VERY hydrated and take one ibuprofen when I want to enjoy my time. Another thing is that you really need to be physically active; cautiously test your physical limits. Sprinting hurts? Try jogging lightly on your toes a different day and see if that works. 

Obviously this is just my point of view, but it might be helpful. If you have any more questions or want a person to write to, I’m here. 

I hope headache free laughs are in your future, 

Sierra