I had my consultation with Dr. B. at the Chiari Institute this past week. He thinks i need a decompression with a spinal fusion to correct a retroflexed odontoid process. Yikes! This is a shocker! Does anyone have experience or advice about this! thank you!
Hi...
My NS thought it best to do the spinal fusion first ....wait 6 mths and look at my symptoms to see what had improved and go from there as far as decompression goes.
Had the fusion , waited the 6 mths and I still had many CM symptoms so we went forward with the decompression.
Does De. B want to do it all at once..decomp and fusion???
I can only imagine how you are feeling after hearing all this....hang in there. You are in my thoughts and prayers.
Lori
Hi Lori, He thinks it's probably best to do both, but he is going to meet with the team and get back to me by Friday with their recommendation. How was the recovery from the fusion? Did it help at all? Did you lose lots of movement in your neck? I am a bit overwhelmed! Thank you so much for your reply!
Lori, I know that we are all different, but i wondered if you thought the fusion had helped you? Do you think that the decompression was more helpful since you still were having symptoms after the fusion? Dr. B. said that either I should have both procedures at once, or have the decompression first and then possibly the fusion later. I hope you are well and that you don't mind the questions. It seems that there is little feedback available for this operation. Thank you so much! Kendra
lori said:
Hi...
My NS thought it best to do the spinal fusion first ....wait 6 mths and look at my symptoms to see what had improved and go from there as far as decompression goes.
Had the fusion , waited the 6 mths and I still had many CM symptoms so we went forward with the decompression.
Does De. B want to do it all at once..decomp and fusion???
I can only imagine how you are feeling after hearing all this....hang in there. You are in my thoughts and prayers.
Lori
if you don't have basilar invagination then you NEVER should need fusion. If fusion is being offered it should be in the setting of have a resection of the odontoid because of basilar (or odontoid) invagination. chiari decompression alone doesn't require a fusion.
Sorry I disappeared from the discussion. Had to take a mental break. These decisions are intense as you well know. I am going to try to consult with a doctor at the Weill Cornell Spine Center for a second opinion. Is that where you went, chiarigirl? Do you have a preferred doctor? I do have a retroflexed odontoid that is clearly poking into my brain as well as compression of the cerebellar tonsils and reduced csf flow.
I also went to the institute and was told i had chiari and Basilar invagination they want to do a decompression and also a fusion. They would go threrw the mouth for the fusion but ive been told they go threw the nose now and the recovery is alot quicker. How do they want to do yours. i have my c1, c2 and c3 fused i was told. we seem to have a similar problem
Jeffrey Greenfield is the pediatric neurosurgeon who did my Chiari. We talked about other options but we decided against anything other than the regular operation and I am so happy! I think the odontoid decompression is a team approach with another of his partners and an ENT doctor to help with access through the nose. He's great and I have referred a few folks here to him and they have been similarly impressed.
Thanks chiarigirl12 i will contact him and see if he will see me and see what he says.
Does he only do pediatric. How old were you when you had it done
i don't know what the cut off is considered. i'm 21. i think he sees adults.
Thanks, yes i called and he does see adults depending on the case. I made an appt with him for this month i would like to see what he says. Thanks again for letting me know about him.
I am also in the process of getting an appointment with Dr. Greenfield for another opinion. Thank you so much chiarigirl for the recommendation.It really helps! I had no idea where to get another informed opinion. Good luck everyone! let us know what you decide, Bill and Pepsican!