I am wondering if anyone has any experience with cognitive and memory issues that are not relieved by decompression surgery. I am nearing 1 year post op, and I have cognitive and memory issues that have not gotten any better since surgery. I did experience some minor cognitive changes after I became symptomatic from CM but these issues worsened in some ways and just generally have not improved since surgery.
My cognitive issues are foggy and very slow thinking, lose focus easily (making a grocery list and meal plan for my family is so difficult), short term memory loss, mixing up words, having my thoughts whirling like a vortex in my head but I can not get them out in speaking or writing. Just figuring out how to word this post was very difficult. I also forget what Im doing when i walk into another room and put things in the wrong places. For instance, recently I was making a phone call where I needed to give my credit card number over the phone. I got my card from my wallet and proceeded to enter my card number into the phone as the number to dial. I feel like an idiot and so frustrated by these things that just happen. I feel like I have dementia at 33 yrs old. :(
I also have developed dysautonomia after surgery, so I don't know if my issues are complicated by that at all. Both my neurosurgeon and my neurologist advised me to give myself up to a year and see if any of the cognitive issues resolved. Im close to that and I am feeling frustrated by not seeing progress at all. Because of the cognitive issues and dysautonomia, I was unable to return to my job as an RN after surgery. Since I'm not seeing improvement at all, I worry that I may never be able to return to nursing again.
Does anyone deal with similar issues and can give me some advice? Has anyone tried cognitive therapies for these kinds of issues?
I think since brain tissue repairs slowly, and everyone heals at their own pace. Perhaps you had CM awhile, so it may take longer than 1 year easily to fully repair from high pressures. Also, have you ruled out co-morbid CFS, Fibro, and EDS since all are associated with Dysautonmia and cognitive issues. One suggestion, stay hydrated, exercise gently, and sleep well to maximize healing.
Here's a video from Dr. Oro where he talks about these other conditions complicating CM:
I have had these same issues too.I’m 14months out and still can’t remember things well,short term memory is most irritating.I find I do crazy things,just the other night I got a pan of bread out of the oven,turned around then picked it up burned my hand bad.This is only one of the things that I find myself doing,I feel very frustrated with these symptoms.I have also been told that it can take as long as 3yrs. for the brain to heal.There are dysautonomia to deal with too for me,I’m not being treated for that,I intend to call my NSs office to talk to him,the only med. I take is gabapinton it’s not helping much.Does anyone have ringing and buzzing in the ears?This has become a real bad symptom for me is there anything to help this? It has been a issue for years but only periodically,now it’s very consistent and it drives me mad.Ihave done a little research and there seems not to be a lot of options.I guess it’s a wait and see for now,keep us posted on your progress,we will listen to each other and hope for the best.
Lynn, I’m 11 months post op, and although improved, I still have the cognitive issues. Your story about dialing your credit card number comes right out of my book. I do embarrassing things almost on a daily basis. You have such a wonderful personality, though, that I think that’s what shines through to the people around you, not the silly mistakes. I haven’t put much effort in to helping myself with cognitive stuff yet, so I don’t have anything useful to suggest, other than try to give yourself a break- you don’t have dementia, you have a brain injury so it’s ok if from time to time you do something a brain injured person would do! I think that em is right that it will continue to improve. I know that nerve damage in the extremities repairs at about an inch per month, so it’s about a year for carpal tunnel or elbow entrapment. I’m sorry your feeling down Lynn, but if it’s any consolation I think you’re great, you are a great friend and help a lot of people here.
Thank you all so much for taking the time to reply. There is comfort in the fact that Im not alone in experiencing these symptoms, although, I wouldn't wish Chiari and the issues it causes us on anyone. I think I was completely unprepared for the length of recovery after surgery and the fact that I would still have some issues. I guess I expected to be "back to normal" after surgery, although that was never promised to me.
I forgot to mention that I have been diagnosed with Fibromyalgia and my rheumatologist said it resulted from dysautonomia. I have started to experience worsening palpitations and other symptoms of possible POTS, although I have never had prolonged tachycardia or passed out. I have yet to see a doctor for these symptoms. I think Im delaying it because I can't bear to get another diagnosis. The fact that there are meds that may help is good info for me. Perhaps I should see a doctor, but Im unsure of who to even start with. Emmaline - Thank you for the information about Dysautonomia!
Thank you for this posting, I have wondered about these issues myself. I can certainly relate to your cognitive issues. Since my decompression, I have days where my thoughts are for lack of a better word scrambled. This is frustrating for me too. Even as I reply to this post, I have disconnected thoughts as well as intermediate typing dyslexia. My biggest noticeable change in cognition is repeating myself or telling the same story to the same person and not remembering having already told it until politely usually reminded. My biggest noticeable change in cognition is repeating myself or telling the same story to the same person and not remembering having already told it until usually politely reminded. (Sorry I couldn’t resist, I have to make light of my own situation is it helps me cope :-))
Hang in there I am a believer that it does get better. My dad used to say to me “If you didn’t have bad days you would never know what a good day was, every day above ground should be a good one.” I don’t know how much of that can be taken to heart but it is my creed now. Time goes by so fast it seems, at least to me. I am pushing 45 years young now. I know it is hard but take the bad with the good especially when more days seem overwhelmingly trying than not. I have found that sometimes I just need to give my mind a break from itself. In other words, I feel it is beneficial to sometimes just veg-out. As an RN, you are probably more aware of the abundance of available outlets for this aforementioned disconnect. For some people this could be anything from playing a video game, cards, watching a movie, etc… I understand that in today’s workaday life that is not always possible or even a viable option, but I refuse to accept the alternative. I will be praying for you and hoping that your conditioned improves. If you need a friend or someone to talk or even just to vent your frustration, please do not hesitate to contact me.
Thank you for this posting, I have wondered about these issues myself. I can certainly relate to your cognitive issues. Since my decompression, I have days where my thoughts are for lack of a better word scrambled. This is frustrating for me too. Even as I reply to this post, I have disconnected thoughts as well as intermediate typing dyslexia. My biggest noticeable change in cognition is repeating myself or telling the same story to the same person and not remembering having already told it until politely usually reminded. My biggest noticeable change in cognition is repeating myself or telling the same story to the same person and not remembering having already told it until usually politely reminded. (Sorry I couldn’t resist, I have to make light of my own situation is it helps me cope :-))
Hang in there I am a believer that it does get better. My dad used to say to me “If you didn’t have bad days you would never know what a good day was, every day above ground should be a good one.” I don’t know how much of that can be taken to heart but it is my creed now. Time goes by so fast it seems, at least to me. I am pushing 45 years young now. I know it is hard but take the bad with the good especially when more days seem overwhelmingly trying than not. I have found that sometimes I just need to give my mind a break from itself. In other words, I feel it is beneficial to sometimes just veg-out. As an RN, you are probably more aware of the abundance of available outlets for this aforementioned disconnect. For some people this could be anything from playing a video game, cards, watching a movie, etc… I understand that in today’s workaday life that is not always possible or even a viable option, but I refuse to accept the alternative. I will be praying for you and hoping that your conditioned improves. If you need a friend or someone to talk or even just to vent your frustration, please do not hesitate to contact me.
I hope you get to the bottom of your symptoms and find some relief. I am a registered nurse also. My CM symptoms took me from floor nursing to a more desk-type job with a little patient contact. My fear is that my decompression surgery on Monday will not work and I will lose the job I have now. You will be in my prayers.
I hope your surgery goes well and is successful! Mine was, in the way that it alleviated my headaches,occipital pressure, right side weakness, numbness and tingling, vision and balance issues. Plus, my Chiari was rapidly worsening, so it stopped the progression and possible future damage. The issues I’m still having are mainly just frustrating rather than debilitating. I am glad I had surgery! Be prepared for a long recovery and give yourself permission to rest as much and for as long as you need! And, always hope for the best! Never lose hope! I will keep you in my prayers tomorrow!
Sonya