Hello all, I was diagnosed with Chiari by accident about a month and a half ago. I was meeting with an MD to get an MRI on my neck due to neck issues. I knew I already head two degenerative discs that weren't bad enough for surgery so we were just going to do an injection and ordered the MRI to help with a visual as to where we were going to do the injection. When we ordered this MRI we found Chiari and I was referred to my NS. He seems knowledable and was initially okay with surgery. I waited about a month and seaked out other opinions. I came back this week and met with him. He confirmed that is obviously was Chiari. He compared by MRI from this year to last year and I was borderline chiari last year and the herniation has gotten progressively larger. However, he now states he wants me to find a good nuerologist. He said if I meet with a nuerologist and they send me back to him he will do the surgery but he is not sure that all my symptoms are created by Chiari. I do agree that I will need to find a good Nuerologist due to the fact that Chiari never goes away.. However, I am frustrated that the NS took surgery off of the table when he said to " Call him when I was ready" the first time I met with him.. I have heard neurologist are just high paid drug dealers.. I have been trying to figure out my head aches for over 16 years and am losing the ability to use my right hand due to nerve damage.. What are your thoughts? I just don't want to get thrown back into the cycle of BS and misdiagnosing..
Neurologist manage medically and refer to surgeons when they aren't sure that is the best option. Surgeons do surgery but refer to neurologists when they aren't sure about the surgery. You didn't mention what your second opinions came up with. But yeah I'd find a new surgeon. Not for any of the reasons you mentioned though. Most people will try and avoid brain surgery because of the inherent risks. They will develop a team of trusted practitioners to advise them because they know that their own opinions are clouded by the conditions they have and they can easily out of desperation make a decision that they may not have logically made under different circumstances.
You have a surgeon who upon reflection wants an opinion from a non-surgcial specialist. because of that you have lost confidence in him. There is no way in Gods green earth even if he is right, that I would let him crack open my skull. Your own attitude going in is almost as important as the surgeons skill and can have a huge impact on your healing/outcome. Your doubts may linger and effect that.
My personal opinion is I think you found a treasure in your NS. Full honesty, concern about doing the right thing, wanting medical management advice is rare especially in the world of Chiari. Just like the spinal surgery you are avoiding because it so often leads to a downward spiral and repeated surgery, Chirari surgery often has the same result. Its the option when there is no other option.
Thank you for your reply TJ. The reason why I am questioning this is because I have heard that Neurologists are no good and just continue the loop of BS. I've been trying to manage my head aches for over 16 years.. and they have just gotten worse.. In regards to the second opinion he said I was a surgical canidit then he ordered a CINE MRI which showed I do not have CSF blockage. The NS that I am seeing now said that CINE MRI's are very unreliable especially because I am laying down on my back. I just don't want to begin the cycle again.. It is apparent due to multiple nerve testing that both surgeons have done that I have nerve damage on multiple levels. I understand Chiari is something that you cannot stop.. That you will probably have to get surgery again.. However, my understanding is the longer you wait the less you can reverse when it comes to nerve damage as well as pressure on the spinal cord...which controls everything..
I like your surgeon. He is correct on the reliability of a Cine MRI. Its a cardiac test with a possible application to neurology. They provide a piece of a puzzle not an answer. The size of that piece varies dramatically. The neurologist has other tests at his disposal that are more definitive as to flow.
I would guess the nerve damage is the NS concern. Adhesions formed over time can cause some problems, but while they do that they also prevent bigger problems by stabelizing nerve trunksand a lot of folks have learned that following surgery when things have gotten worse.
Why not ask the NS for a referral and tell him your concerns. if he has an actual conversation with you and makes a good referal, you win big time..........
Mallisa said:
Thank you for your reply TJ. The reason why I am questioning this is because I have heard that Neurologists are no good and just continue the loop of BS. I've been trying to manage my head aches for over 16 years.. and they have just gotten worse.. In regards to the second opinion he said I was a surgical canidit then he ordered a CINE MRI which showed I do not have CSF blockage. The NS that I am seeing now said that CINE MRI's are very unreliable especially because I am laying down on my back. I just don't want to begin the cycle again.. It is apparent due to multiple nerve testing that both surgeons have done that I have nerve damage on multiple levels. I understand Chiari is something that you cannot stop.. That you will probably have to get surgery again.. However, my understanding is the longer you wait the less you can reverse when it comes to nerve damage as well as pressure on the spinal cord...which controls everything..