I went to a Chiari specialist and was told I was a candidate for decompression surgery because of all the symptoms I am experiencing. I do not have a syrinx, but my cervical spine is straightened and I might need two surgeries. Forgot the name of the second surgery. I had an MRI of the brain and cervical spine only. The doctor said I did not need a CINE MRI or lumbar puncture cause we already know that the CSF is being blocked. How do we know that? I thought those tests would help determine necessity of surgery. Taking my word that I have all these symptoms is enough? I find that odd. What does everyone think?
I do have a Chiari 1 with a 7 mm herniation. The MD said I have the symptoms and the herniation so of course I would have a decrease flow in CSF.
Deciding to go through with surgery is a big decision! You have every right to ask your NS these questions. You can also get another opinion…My NS encouraged me to get another opinion. You could also tell your NS that you would be more comfortable getting a CINE and full spine MRI to confirm that surgery is the best approach. Your NS may very well be correct in what he’s saying, but you need to feel confident in your decision to proceed with surgery. I hope you get some answers soon!
Mine did the surgery without a CINE or full spine. Said he could see crowding in the posterior fossa that would impede CSF flow with the regular MRI of the brain/cervical spine. My surgical outcome was good but symptoms have returned 5 months later. My son's herniation is uneven, one side at 2mm and the other side at 7mm, they did a CINE and did not detect any disruption in the flow and decided at that point to wait on surgery. Just goes to show how indiviual each case can be. Hope you get answers to your questions soon!
Surgery is a very big decision and you have to trust your NS completely. From your post, I get the feeling that you do not trust him. This leads me to think that you need a 2nd, 3rd, 4th or 5th opinion. I can say from experience once you find the one you trust you will know he/she is the one.
My 3rd opinion was with Dr Oro. My husband and I knew instantly that he was the one we trusted. My 1st NS wanted to take the wait and see approach and was convinced all my symptoms were from Vitamin D and B12 def. The 2nd NS I saw was ready to schedule surgery and he said the surgery would be 100% sucessful at getting rid of my headaches. The weird thing was headaches were not my main complaint. He only does about 3 surgeries a year so that was a no go.
Good Luck!
Diana
Just so you know that is how Lily's nuerosurgeon did hers, her symptoms were a lot worse than what the MRI's were showing. So they went in and did her decompression and found out it was worse. Thats not to say if you feel like its to fast or if you are having questions and doubts Don't Hesitate to ask your doctor questions. This is to big a deal to just blow it off or get into it blindly
Diana is so right you need to feel comfortable with your NS.
Diana Smirl said:
Surgery is a very big decision and you have to trust your NS completely. From your post, I get the feeling that you do not trust him. This leads me to think that you need a 2nd, 3rd, 4th or 5th opinion. I can say from experience once you find the one you trust you will know he/she is the one.
My 3rd opinion was with Dr Oro. My husband and I knew instantly that he was the one we trusted. My 1st NS wanted to take the wait and see approach and was convinced all my symptoms were from Vitamin D and B12 def. The 2nd NS I saw was ready to schedule surgery and he said the surgery would be 100% sucessful at getting rid of my headaches. The weird thing was headaches were not my main complaint. He only does about 3 surgeries a year so that was a no go.
Good Luck!
Diana
Thanks everyone....I will take all your advice into consideration.