previous chiari patient.

[lol4life]

Hello. 3 years ago i was diagnosed with a type 1 chiari malformation and along with this a syrinx and a basilar invagination. a basilar invagination is a very rare disorder that is sometimes found along with a chiari malformation. they discovered these conditions via MRI. i have had the chiari decompression surgery and was in a halo for 3 months. since then i have had many digestive issues. i have a scar in the back of my throat where the went through and opened my soft palate to take out one of my vertebrae to relieve some of the pressure on my brain. i have many digestive issues now. i have constant nausea after everything i eat. i have a gaggy lump feeling in the back of my throat, which i think is due to the scar tissue in my throat. but i have enormous amounts of intestinal gas and is rarley relieved. i am on the anti nausea and anti emetic pill zofran and on prilosec for the frequent heartburn i also expierience. this condition is very annoying and upseting and if anyone had any tips that would be great. thanks!

[selmaS]

HI and welcome to the chiari forum.

This is an older post and the original poster of this thread is inactive. U can try to private message them, but u may get a better reply by  starting ur own thread asking about the procedure in question,

Is ur DD going to have a fusion done?is that for the basilar invagination?

I hope we can help u find answers to ur questions and offer u the support u need : )

We r glad to have u join us, but we r never happy to have neone join  for the reasons they had to seek us out for, and ur reasons include a child.....

I pray we can help u find what u seek
"selma"

[klf25]

How did the fusion affect the movement in your neck?  My daughter, age 6, is about to have surgery for Chiari and basilar invagination.

[lol4life]

yes i have been to many chiari specialists. i have one where i live and im scheduled to go and see them next year. they did chip away a bone to make more room and my neck is fused. they removed my ondontoid process. (the bone your head pivots on) and the took bone from my hip and fused it. now i have rods screws and plates in my neck. thank you for the tips and suggestions. im so fortunate to have found an awesome chiari forum. thank you for everything you do!

[lol4life]

yes i have been to many chiari specialists. i have one where i live and i am scheduled to go see them again next year. thank you for the suggestions. and yes they did chip away a bone to make more room and my neck is fused. i have a plate, screws and rods in my neck. and im so glad to have found this chiari forum. i cant thank everyone enough for all the support :)

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry to hear u r having so many issues.

May I ask who ur dr was, and do u know if he/she is a chiari specialist?

I had the PDF also had the basilar invagination...no syrinx tho....and I was not in a halo and I did not have any incesions in my soft palate , but they did chip away at the bone so as to give some more room. They didn't do a fusion on ur neck did they?

Please see another dr and make sure it is a chiari specialist and get a review of where u r now. When was ur last MRI?

I also have acid reflux and had gaging prior to surgery...not so much now after ward.....my surgery was May 28th so not quite at my 3 months....

Where do u live?......we do have a list of chiari specialists on a thread here, please research all drs b4 u choose one. ne NS can do this surgery, but the NS that makes this the focus of their practice is where u want to go.

"selma"