I know this has been discussed before and I recently read a t- shirt line that said “you know you have a chiari when brain surgery seems like a good idea!” All jokes aside I know this has been discussed before but I want to know how some of you came to the decision. I know the size doesn’t matter so I have been told it is the symptoms, but I was just wondering when is the point that you made that decision. I have twin boys who are entering 8th grade and one was just diagnosed with a chronic disease…so I am feeling selfish to even consider the option and dismantle my family’s life. I know it is an individual decision…but I really need some feedback.
I think I am understanding from your post that you have Chiari but are hesitant to have surgery partly because your son has a chronic illness and your recovery may disrupt your family life? Is that correct?
To answer your question I decided to have surgery because I was suffering so much from fatigue, tingling and numbness in my hands and feet, head, neck, and shoulder pain, and from dizziness. I was unable to do anything other than drag myself to work and come home and go to bed. I just knew I was ready to take a chance on feeling better and luckily I have had a very good surgical outcome. I was basically no use to my family before hand because I had no energy to cook meals, clean the house, or socialize.
Recovery from surgery involves a lot of rest, no lifting over 5 lbs, no driving, and no bending over for about 6 weeks. Does your son's condition require a lot of hands on care? If not things might go much smoother than you expect! Good luck making your decision! If you are feeling terrible you can't give the best care to your loved ones so don't feel as though you are being selfish!
I think I am understanding from your post that you have Chiari but are hesitant to have surgery partly because your son has a chronic illness and your recovery may disrupt your family life? Is that correct?
To answer your question I decided to have surgery because I was suffering so much from fatigue, tingling and numbness in my hands and feet, head, neck, and shoulder pain, and from dizziness. I was unable to do anything other than drag myself to work and come home and go to bed. I just knew I was ready to take a chance on feeling better and luckily I have had a very good surgical outcome. I was basically no use to my family before hand because I had no energy to cook meals, clean the house, or socialize.
Recovery from surgery involves a lot of rest, no lifting over 5 lbs, no driving, and no bending over for about 6 weeks. Does your son's condition require a lot of hands on care? If not things might go much smoother than you expect! Good luck making your decision! If you are feeling terrible you can't give the best care to your loved ones so don't feel as though you are being selfish!
Thank you so much Anglyn for your wisdom. I guess if I don't think about surgery and just continue to barely live I will not be there for my son as much as he needs me. To answer your question my son has CRPS(Chronic regional pain syndrome). We recently got back from Boston for his 3- week treatment. It is a disease without a cure, but he is stable right now. I am returning to work to help offset some of my and my son's medical bills. Thank you again for your very sound advice!!
sorry to hear about your son, personally I have not yet had the surgery but I can tell you for sure that when I go see the ns in sept if he say the s word lol I am going to say when. I am hoping this will stop or at least ease the headaches, neck pain, tingling feeling at time through out my whole body and all the other issues, I have about 90 % of the symptoms for cm and hydro.
for me the choice is easy after 30+ yrs of misdiagnosis I am ready.
I guess it comes down to what do you want to live with?
sorry not much help but really only you can say if having it fixed is right for you.
Thank you for your reply it was very helpful to me, as of prior to this year I would have never considered the surgery but the symptoms seem to be worsening lately. The numbness in my arm, low blood pressure, dizziness the list could go on. I will let you know what my NS says. :)
I have Chiari with a Syrinx. I have made the decision to have surgery because I meet with 3 doctors and they all recommended it. I don’t feel my symptoms are that bad right now but I am told they will progress and I could eventually become paralysed. So I am gonna do it now.My concern is I also have high blood pressure and that scares me.
I decided to have surgery because I had NO other choice. I was in an auto accident that made the CM misbehave. I was managing fine all of my life. All of the sudden, the neurological symptoms just spiraled out of control. The NS explained that most of my symptoms were manageable without the surgery. When the CSF became blocked, that was no longer the case. The pressures in my head were ridiculously high and there was no other way to save my life. I was still hesitant but agreed to have it done.
Each person must weight the risks versus benefits given their situation. You have peeps here that will always listen and try to help. Good luck!