Hi all- tomorrow I will see a neurosurgeon who specialized in CM- I am hoping to get some answers, since my NL basically told me none of my memory issues or symptoms are related to chiari. I read that there is a list of questions that I should be looking at but can't seem to find...any help would be appreciated.
Hi there,
I am not sure to what 'questions' you refer specifically, but these links may be able to help you out.
Preparing for your Appointment
Things to discuss with your Doctor BEFORE Surgery
Good luck with your appointment!
I strongly recommend making a list of the symptoms that are of greatest concern, because it is sometimes hard to forget what is on your heart during the visit.
I bring my little sheet and discuss the symptoms that worry me the most and then develop a plan. It makes me feel empowered and I feel like the doctor's visit has a clear purpose.
I wish you the very best as you meet with your doctor. If you don't feel heard or cared for, please know there are other great docs available. So, I strongly recommend being vigilant about getting a good doctor, because they are with you for a long period of time.
I have had the same neurologist for over ten years now, and I absolutely love her!!!!!
Check the finding a doctor tab above. There is very complete list of questions.
Write down questions, that way you will remember them. When you get into see the doctor, all is forgotten when he/she starts to speak.
James
I strongly agree with the above suggestions. And please get another doctor if you are not happy with yours. A rapor with a doctor is very important. Please keep us uodated. Good luck.
Hi Jshan, I am wondering how your appointment went? Did you like the NS and did they answer your questions? I really hope it went well for you. Sending you gentle hugs.
Hi- not as well as I would've liked. He is a very well known surgeon in NY. I paid $350 for the consultation because he doesn't take my insurance. He sat with me for about 10 minutes & told me that he couldn't say that I had to have the surgery- that it was my decisions based on my symptoms and how bad I felt. He told me that my memory issues are not related to CM, but didn't explain why he felt that way. He didn't ask me for my symptoms & told me if I started to have cognitive issues then I should consider surgery- aren't cognitive issues memory??? I asked what the risks of surgery were & he said "they go from getting better to dying"- seriously?!? I'm not sure if I should seek another opinion or just try to deal with the symptoms until they get so bad I can't.
I also asked about having a CINE MRi & he doesn't think I need one.
Cognitive issues go beyond memory and involve thinking processes. such as decision making, carrying out tasks, thinking, planning. They also involve different areas of the brain than just memory.
Quite a few Neurologists and NS are not fans of Cine MRI (well over half) as it gives very limited information in regards to flow and requires a great deal of skill to position and keep the head in a neutral position for the study. It gives to many false positives for restricted flow. It does have value as a comparative tool pre and post operatively.
There are other techniques far more dependable.
No honest surgeon will recommend surgery if he believes it still be in in that grey/elective surgery area. IF he sees imminent danger or present danger that requires surgery, he will tell you. Now that doesn't mean he doesn't believe that surgery might help, it only means he believes it might not and is likely leaning towards the not. what you have to be careful of is the "Chiari specialists" who believe everyone (or almost everyone) can be helped. There are no uniform standards for a successful surgery beyond a live patient after all they are all decompressed at the end. so he was correct saying " "they go from getting better to dying"
I'm sorry it didn't go better for you., but it sounds like at least you got an honest one...........
How did the appointment go?