2 years after the decompression and I haven't recovered

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I had the decompression surgery 2 years ago and nothing's changed. I still have these symptoms:

-sharp sting in head every now and again

-difficulty understanding and comprehending

-some difficulty reading

-balance ( walking, stumbling, tripping over feet, leaning)

I had an appointment with my neurosurgeon who did and excellent job, he told me that I'm doing great and I no longer need the routine check up, which is a good thing. I'm just concerned if these symptoms will go away. im afraid that these symptoms won't go away and I'll be dealing with this for the rest of my life. I don't talk to my wife about it anymore because I don't want her to feel like her efforts in trying to help me cop and be ok are in vain. In truth, I'm depressed. I don't think I'll ever get over these symptoms. I feel like I'm going to end up having Dementia or Alzheimer's and forgetting my family. That is what scares me the most. The only way I can deal with these life altering symptoms is to hide behind a smile. I'm aware that there are far more severe cases that mine out there and I'm not saying that my case is more important.....just wanted to vent a little I guess

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8 Replies

  • Posted

    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.

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    • Posted

      I appreciate you taking the time to read what I posted. It's hard not to wear a smile just to hide what's going on. I don't wanna bring others down, or mess up anyone's day with what I got going on. I just try to push through the day and when I'm alone (this may be weird) but I talk to myself. At least that way I don't have to worry about killing other people's good day. This site just make me feel good though. Having people being able to relate makes life a little bit more tolerable.
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  • Posted

    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
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    • Posted

      Thank you for responding. I do live in the US. The pain varies. I'm a CNA so it all depends on what kind of day I have but I would say, on average, between 3 and 6. I do experience the same symptoms only that the numbness and tingliness has went from a 1 to a constant 5. I'm not on any meds. I do wanna share with her it's just that I don't want her to feel helpless. She felt helpless during pre surgery. It was really sad to see her like that and I don't want her to go through that again. But I think I will sit her down and let her know this. This site has been really helpful and I appreciate you taking the time to talk to me
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  • Posted

    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???
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    • Posted

      I thank you for responding. I'm getting some helpful tips and I do believe in God. I don't regret the operation. If I didn't get the surgery within a year after getting diagnosed, I would have died within a year. I pray a lot and I have gotten more open with my spouse. Life is just too hard sometimes.
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    • Posted

      Hi patsfan89,

      Life is how you make it, but if you think positive each day, no matter how hard it is, you will feel easier , if you believe in God, then ask Him to help you, with the blind faith come blessing you can ask anything from our Lord, let Him drive your life so that you will find less burden..it is hard..can you imagine..I was the main provider..suddenly I become a housebound..but thanks Lord..I really believe in Him..somehow..we manage..living each within our mean..well money never an issue before..but now..we can appreciate what luxury mean..as before ..we didn't..unfortunately we are not able to help people who are less disadvantage than us any more..as before we use to help lots of people..some how...we do not really know why is that..but I am sure..when I GET BETTER and able to work again..I will cherish every single day I have got..and give  my time to GOD, family and friends more than before..so my advsie to you..is think positive..do not think of negative..you are here for a purpose ust remember you are still lucky even though life can be hard...you live..you do not have cancer..just accept your condition make the best of your time..just be gentle to your partner..express how you feel I am sure your partner will give you support.

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  • Posted

    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)) 
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