2 years after the decompression and I haven't recovered

Hi sorry to hear about your problems, I am nearly 2 years after surgery with a huge list of symptoms. I am still unable to return to work or any of the activities I used to enjoy.

I just really wanted to say don't hide behind a smile, doing this only benefits everyone else and makes it harder for you. Many doctors are so reluctant to take the lead with this condition that they will take any opportunity to back off and hand over responsibility to someone else. Don't increase your suffering to make other people's lives easier, the more you hide the more doctors will claim you are "cured".

I know how exhausting a possitive attitude can be at this stage so please do not loose hope or motivation, your health is worth it.

I hope you find this site as helpful as I do, especially when discussing symptoms that are confusing or seem too minor to discuss with a surgeon. I am happy to listen to anything you're concerned about.

Hi there, I am so sorry to hear about your condition, are you in US?, so in scale of 1 - 10 (to will be the worst) are you saying that even after the operation 2 years ago there is no different or is it getting worse?...do you still feel the pain?..are on medication..don't you think that your wife deserve to be shared how do you feel about it..or otherwise you will feel depress even more..there is a company or association where you can join to train your brain/main called lumosity..you can join its quite cost effective..it is basically to have exercise each day within our limit so that you do not forget and become normal (sharp)..on the other hand talk to your MD/GP if you can be referred to have CBT (counselling) that might help you to express how do you feel at present..if you have faith..perhaps go and try to sit down and pray...or meditation and take breathing exercise will help to ease the pain..I am chiarian and waiting for my surgery..I used to have so many tablets..I start to have the accupunture..magnesium oil..plenty of waters, breathing exercises..eating healthy (reducing fried food, junk..anything that contain gluten and procesws food) it seems that ease a bit..I start to reduce my tablets..as after talking to my neurologists..they are only suppress temporarily...chiari malformations is a mechanical issue (deform) is not a disease, so there is no cure...is a condition..surgery being done to prevent the condition to get worse..(according to my health care professional - that would be the last result) if they can be managed by medication..they will keep doing it..the problem is all these tablets will give another side effect...so its catch 22..at the end of the day..how can you cope with it..if you can't then you hav to talk to the expert..can they rectify it..is there anything else that goes wrong..beside chiari..when I watch the youtube..some other have an issue after the operation because they have other problem with their health..or perhaps the result after the surgery..but you must sort that out..dont leave it and be quiete about it..you are not alone...there are others who are not recovering just yet after the operation..but it should be a bit better at least..some will get better in 3 months some could be more than 2 years..but please..don't give up...I am trully feel for you..but dont loose your hope..I am sure  this time next year you will be smiling and thanks GOD that you have done the right thing..by not giving up.. GOOD LUCK

HI , I am sure that if you are stress that make it worse, you have to accept your condition, and sharing with your partner will help as long as you dont take too much burden..obviously if you are stress that make her worry as she love you...I would just take your time..try to eat healthyly..magnesium oil really help me..I leave all my medication, try to walk 5 - 0 minutes each day, drink plenty of fluid (2 ltr min) and talk to your doctor see if they can refer you to have counselling...meditation or go to church if believe in GOD..or try to log in on Yout Tube with Joyce Meyer..there are lots of free speech that help your spirit level..as chiari is not a disease is mechanical issue that can't be cured..surgery should help reducing the symptom..you might need another surgery..like others..go and see your neuro surgeon again..explain this to them..obviously..it still not right..but you have to think positive..I know it is easy to say this..but I am in the same boat..do you regret of having operation???

I just wanted to say I understand and feel the same way. I have Chiari and am scheduled for surgery January 22nd. In the last couple months I have been having fairly consistant issues with Aphasia and it is progressively getting worse. This along with my memory issues and hand tremors is very depressing and I am worried it will be permanent and worse... keep progressing even after surgery. So yes, I worry about dementia and alzheimers as well. I am 44 years old and feel like I am aging so much faster than I should and it is scary. I just pray that surgery at least haults the progression. I don't understand though why you do not need followups anymore? I thought that you should have annual MRI and followup forever. Surgery is not a cure it is a treatment, which in my opinion needs to be routinely checked. Maybe you need a new neurosurgeon for a second opinion? Was your NS a true Chiari specialist?? Prayers and ((hugs))