My daughter was decompressed 5 years ago and has done fairly well in that she holds a full time job She is single and has her own place. She is 35.
However, she mentions her "brain condition" to me 5 times a week...she calls to complain she is out of "spoons" by 11 am, and she is disgusted with the world because no one understands she is sick all the time. Sleep issues, balance complaints, brain fog, tired, tired, tired...did I mention tired?
I think it is more than Chiari and suggest she seek counseling, or mood meds. She is fine with others, or knows who is just not going to take her calls for this. Am I the enabler?
I am 34 and have been dealing with the tiredness and pain ect. for almost 12 years. It SUCKS! But i can completely understand your frustration , you dont want to hurt her feelings or make her think you dont care but you also dont want her whining to you everyday.I dont complain to my mom, i spend most my time trying to help her and my stepfather out and try to hide the fact im i pain so i dont worry them. They can tell by looking at me when its bad and they ask if i need anything but other than that im a big girl and take care of me and my home. Sometimes they will ask if i want to go somewhere and i just say i dont feel well today maybe next time and leave it at that. Explain that you love her and if she needs something to let her know but you arent a doctor and dont know what else to do. Refer her here so she has the emotional support she is seeking. The big thing is being around people who understand from experience. I think that will really help her and take some of the stress off you. Sorry i couldnt be of more help.
I dont have access to the internet all the time but i will answer when i do
You enable a drug addict or someone who abuses alcohol, not someone who is ill. The decompression surgery doesn't cure Chiari, it only stops it from from progressing to a more advanced state, So, depending on how bad your daughter's Chiari was, she will continue to have residual symptoms for the remaindet of her life. This is why is it is so important to get a correct diagnosis and treatment for this disorder/disease. But, unfortunately, doctors are clueless and patients suffer for years in pain and agony. In the end, we lose friends and family members because they can't "see" our illness and therefore don't give us the support we desperately need.
I am 37 and will be having surgery in March or April. I am tired from the moment I wake up. I don't tell people about my brain issue anymore because people don't understand it. I think your daughter needs to see a cardiologist to be evaluated for dysautonomia. If she has it, they can put her on medicine for it. She may need to have a follow up MRI to make sure there are no issues with instability where she had surgery.
Take care,
Nykki
"Doctors are clueless" sums up a lot!!! Thanks so much for your thoughts!
Derby mom, I’m so glad your daughter has someone to turn to, this condition makes life so lonely. I understand your frustration…nobody likes to be complained to day in and day out it starts to affect you. I’m making some assumptions about your daughter that she is still considerably symptomatic post op. Surgery is not a cure for most people and most of us have some degree of lingering symptom from mild to severe, and many of us have additional conditions that go undiagnosed- like dysautonomia, lymes, cranio cervical instability…often decompression surgery is not a one-and-done solution. I worked full time through the years of severe pain, I kept a household and relationships, but I had to dig deep all day every day to make it through. Working was not an indicator that I was doing fine but more a testament to my drive to maintain some resemblance of normalcy. I’m guessing that your daughter is trying to accept what her new life is - probably light years away from where she saw herself or wanted for herself. Being post op with symptoms can be harder for people to deal with because there is no surgery in the future that may fix things- hope is gone. She may indeed be dealing with depression and I think that would be the most normal thing, but she also needs continued emotional support. Have you had an open conversation with her about how she feels about her post op life, disappointments, her hopes for her future? She may be holding a lot in and the complaints are just the overflow from steam under pressure. I have always tried to show a normal a front to the world no matter how bad I was feeling- my own coping mechanism- and that seemed to give permission for some people to assume 1. I’m normal and to assume 2. I’m lazy, attention seeking, etc…when I let them know I not up for normal activities.
That being said, I am sorry you are dealing with this too. It is affecting you too and that is fair.
I think your daughter complains to you because well...you are her mom. Mom's will give out a lot more sympathy than the general population. I am 36 and had a successful surgery 2 years ago. I also have an arthritic condition that gets me down when it flares up. Most people just don't care or notice when I'm struggling and you hate to complain constantly to your friends so well...you complain to the one person that (hopefully) would never turn their back on you. So many people assume you had surgery and you are fixed and back to normal. Not so. Even the best outcomes won't leave you 100%. As to being tired, I too am tired all the time. Not as bad as before surgery but excessively compared to others and people just don't understand why you need more rest than they do.
It is understandable that you feel frustrated. It's a difficult position to be in to hear the complaints without being able to do anything to fix the problem. Honestly she probably just wants someone to listen to her vent and possibly to validate her feelings. Let her know it's ok to rest if she's feeling tired.
Is she on this website? If so it's a great place to come and vent. We all have been there and understand!
I think your daughter complains to you because well...you are her mom. Mom's will give out a lot more sympathy than the general population. I am 36 and had a successful surgery 2 years ago. I also have an arthritic condition that gets me down when it flares up. Most people just don't care or notice when I'm struggling and you hate to complain constantly to your friends so well...you complain to the one person that (hopefully) would never turn their back on you. So many people assume you had surgery and you are fixed and back to normal. Not so. Even the best outcomes won't leave you 100%. As to being tired, I too am tired all the time. Not as bad as before surgery but excessively compared to others and people just don't understand why you need more rest than they do.
It is understandable that you feel frustrated. It's a difficult position to be in to hear the complaints without being able to do anything to fix the problem. Honestly she probably just wants someone to listen to her vent and possibly to validate her feelings. Let her know it's ok to rest if she's feeling tired.
Is she on this website? If so it's a great place to come and vent. We all have been there and understand!
Thanks so much for some more good thoughts! Yes, she is on this site and many more, always searching for ideas and news about treatments. After decompression, Chiarians seem to be on your own medically. Thanks for the support, all!