Hi and welcome to the Chiari forum,
I am at a loss for words as I had the same NS at TCI but for decompression not a fusion ( which I was told I needed) and have had no issues.....for all that I have seen those with EDS all foreign matter tends to add to post op issues....I feel our body rejects it, and that was what I was told by Drs at TCI...and has been my experience in being a CL on this forum....those that have a patch made from anything other then their own tissue have had a reaction such as over production of CSF, failed patches, infections....Leaks.
May I ask why they removed all the hardware, is this typical for this surgery?.....This is one area I did not research as I keep putting off the fusion as I felt it was not right for me....
I will send u a PM.....
Thank you for just being here for me,and trying to help means a world to me.I want you to know that English is my second language so please forgive me for mistakes.You are asking why they remove the hardware,all the screws were loose and moving.In January when I came to TCI was hospitalized for three days and was told that it looks like all the hardware will have to come out but not now because I was not fused. I lived with this horrible pain for almost 7 months the screws were putting pressure on the occipital nerves.iI had Botox injection pain management trying different meds no relieve. Finally Dr.Insinga removed all the hardware 2weeks ago told me that I have Eds. Before surgery when he was examining me he did not like the fact that my pain was above my occipital bone and going up to the top of my head.And now I have the same pain it it little different because the screws are not there but the pulling pain especially when I get up and start walking is going as high as top of my head.I get some relieve when I start putting pressure by putting my both hands on the top of my head or when I gently tilt my head to the back I get some relive.you know I'm not a doctor but I know my head I feel like my head is sitting to high.I'm so scared I already had 3 surgeries I don't know where to go who to trust.Evan my family they have been so supportive now they are scared and don't know what to do.I keep telling myself that maybe I should wait and not panic maybe I'm still healing but I have bad feelings about all that.What can be done if I was fused wrong should I go and see another NS.What would you do? I was told that TCI is one of the best Chiari centers that is why I came here all the way from South West. Thank you for listening.Hugs:)
Was your surgery done quickly after a DX?....Wondering why they did not know b4 your surgery that you have EDS.....
I would go back to TCI and ask some questions, I had Dr Insinga, but it was for decompression....not a fusion and I did not want it as I am finding those that have the fusion also have EDS and do not do well with the hardware....not sure why they are not aware of it as they are the ones that told me that info....hmmm
That is what I would do next...and outside that maybe get an opinion from a Dr like Dr Oro or Dr Henderson...as they are also top in this field as well if you can afford to get to them.
Yes my fusion was done on the same day as decompression.I did not know that I have Eds both doctors were asking me if I have rheumatoid arthritis and I told them that I have degenerative disc disorder.I was told by one NS that Retroflex odointoyed C 1 vertebrate is pushing up on the brain stem.And that is why I need the fusion he name that condition Basilar Invagination.I will talk to both NS during my next visit and we will see.I will decide after my TCI appointment if I will go and get the second opinion.
Thank you for all your help I will keep in touch.
Oh I understand if you were DX'd with a retro flexed odontoid a fusion is something they would not wait on an EDS DX for...it is more important to stop the odontoid bone from pressing into the spinal cord and or brain stem.
Same goes for the BI DX....but it is the EDS that the fusion did not work like they wanted it to or the hardware....
With situations like that no matter if they knew or you, they still had to do it....we just do not have a choice of other materials to help with those issues/conditions....
Good Luck with your appointment <3
Thank you for all your info I will wait for my TCI appointment and we will see what is next for me, I do feel a little better after I got some reassurance from you,Can I post you after my appointment? Will try to stay positive it is hard sometimes but I have too.
Yes by all means I look forward to hearing from you on how it goes.