Hi everyone. I saw my neurosurgeon for the second time for my chiari. I had a cine mri done two days ago and the neurosurgeon says that my foramen magnum is not extremely tight, but tight enough to cause sensory symptom in the extremities. He said that there is some csf flow but it is limited. He says I'm a surgical candidate. When I asked him what he would do if he was in my situation and he replied that he would get the surgery. During the visit he said he can't guarantee that the surgery will take care all my symptoms. My option is to not do surgery and live with the quality of life that I have now, or do the surgery. I'm scared and having a hard time making the decision. My symptoms are severe enough that it has a negative impact on my quality of life. My fears are that the surgery will make my symptoms worse and I am scared of the surgery itself. Then again I worry that if I don't have the surgery my symptoms may get worse. He said that he doesn't think I will become paralyzed if I don't have the surgery. I'm really struggling with this decision. Thanks for listening.
Mrob62,
I am sorry you are struggling with this decision. Being scared is totally understandable. Only you can make this decision. My only question to your NS would be how he knows you wouldn't become paralyzed? I understand every point you made and your reasoning and totally agree. I would never tell anyone to have surgery unless there is a major issue because I almost became a quadriplegic & didn't have a choice about the surgeries. Please just ask the NS how they can guarantee this to you? No one knew my CSF was blocked and pushing my C Spine out until it was too late & I had to have emergency surgeries with a rebuilt C Spine. I am not telling you this to scare you, just please ask, how they can guarantee you won't become paralyzed? If they still guarantee this won't happen, please get a second opinion. I am so sorry, this is horrible for you and will be thinking about you. Please let me know what you decide and I will be here for you no matter what. Saying a prayer for you and your decision and surgeon.
Could I please ask what made up your mind against surgery?
Abby said:
I know your feeling, should I have surgery or not? It is a personal decision for all of us and yours only to make. Your doctors can advise you, but in your heart and knowing how your feeling will be up to you. We have made the decision to wait and see if progression gets worse. At this point, I am not having it or considering it. I have other disorders that go along with chiari, so right now I am happy with the decision I have made for myself. But, after you have gathered all the necessary information, done a thorough study on chiari, recovery, related disorders, consulted with family members, will you be able to make a decision that is right for you. Many of our doctors really want us to know all the facts and not go into this blind.
Know we are here for you and supporting any dicision you make.
Keep us posted,
thinking of you and sending prayers
My NS told me basically the same thing, that I was unlikely to become paralyzed...however he said I would need a CINE MRI every six months to keep a watch on this as the status could change. I went ahead and went through with surgery because I wasn't living a quality life. I knew there was a chance that I could worsen or fail to improve and I accepted that risk. I just knew that for me personally I didn't want to live out the rest of my days that miserable and not try the one treatment available to me. So far I'm 7 mos. post op and I am doing much better than before. I probably won't ever feel 100% "normal" but I am greatly improved and the issues I do have lingering are very tolerable.
Honestly it's a very personal decision. Ask your doctor what sort of monitoring he will be doing if you don't have surgery. Will your symptoms worsen? I was told that mine would worsen due to the blockage of csf.