Does anyone have a list of questions to ask at first appointments?
I see a neurologist on Monday and neurosurgeon on Friday and I am making a list of what all I need to ask. Any suggestions or advice would be great!
Thanks
I would like to know this to as I see the neurosurgeon on Monday. Some of my questions already are:
Could this be genetic?; If left untreated (meaning no surgery) could this be life threatening and/or cause perm. damage?; What would the recovery time for surgery be?; What are the risks of surgery?; Do I currently have any limitations on what I can do, such as ride roller coasters, etc..?; and "If I choose surgery will I have any long term limitations, meaning after I have fully recovered, any limitations in my life then?
Just a few but would love some more ideas. Thanks.
I think it’s important to ask how often they see patients with Chiari. You really want an experienced doctor imho. Many questions simply cannot be answered with certainty because they cannot give guarantees. But i definitely think its important to take a list with you, and take a person with you who can also add some questions you might not have thought of and remember what was said- just the appts can be stressful enough to make it hard to absorb all of the info. I wish you luck in getting the best treatment possible, its a tough road
I completely agree with Wendy. If at all possible, take someone with you and have them write down the information/answers to your questions. It is a lot of information to take in especially if you are not feeling well. It is always helpful to have someone to help "understand" the information that was given and it is also VERY helpful for the doctors to have another source of information. Try to take someone that is very familiar with your day to day condition. I see myself and my symptoms in a certain way, my mother and my boyfriend see them differently. They have been a huge help in explaining what happens during certain episodes etc. It also makes me feel validated to have someone else say that the symptoms that I feel are real.
Remember that the NL may not be as receptive to your symptoms being from the Chiari. Also, this is one thing that I have learned throughout the past two years...You have to be your own advocate! Speak up!
Best wishes! Please let us know how the appts go.