Hello guys just wondering if anyone can give me info after they had this surgery. Here is a lil of my story. Got dx with Chiari in 08 had the decompression pretty quickly I still had alot of symptoms after recently have been very bad anyway went to the Chiari institute and saw Dr Rekate he explained I had basliar invagination and this is what caused me to have the Chiari in the 1st place he wants to do surgery next tues to correct the issue with fusion. I m just very skeptical and scared/nervous … Here are my questions
Did anyone have the surg and if so where and with who?
Does this surgery alter your look as to what other people see u?
How was the recovery?
Did it work?
They also say I have fibormyaliga so it won’t take all the pain away but will relieve some of it. Please let me know your thoughts I also have eds no feeling in right hand and numbness
I am new on this site so not sure how to look them up and you let them know of your friends with them … Of my questions thank you t
Thank you!
Hi Tara,
My 5 yr old might be going to see Dr. Rekate very soon as well. Can you tell me what types of tests they typically run for new patients after an intial consult if they are considering surgery? How long was from initial appointment to the upcoming TCI surgery date?
What concerns me is how they will recommend as far as treatment for my son. He appears to have Basilar Invagination and brainstem herniation on top of the Chiari but I can't imagine them doing fusion on a 5 year old. At the same time, I've read that if you have decompression without treating the instability, it's like removing the foundation from under a house and the herniation and instability issues actually get worse over time. We just found out he has Central Sleep Apnea (plus all of his motor delays) so some type of surgery WILL need to happen asap. Good luck to you!!!
Hello!
We had a good experience there … He asked me to get a cat scan around my way before I came up there. Then when got there just did a full examination nurse does one 1st then he will come in and go over it. It’s alot of questions. No big tests for me there! I sent all my records he brought us into a bigger room and went over everything from all my scans from recent to now.
I was a very nervous too because when his nurse called to make the appt they wanted me to come for a consult wend and have surg that thurs… I didn’t like that idea so asked to go home after the consult to think about it. My appt was on the 10th of April and surgery is next tues the 30th. He gave me alot of paper work and research about basliar invagnation which was very helpful
I had decompression surgery 5 years ago and just that for the Chiari what you read is correct because just the decompression surg was not helpful at all for me and until I went to Dr Rekate I didn’t know why. Apparently the blasliar invagnation is what caused the Chiari on the 1st place. I am and was very skeptic about this surgery because of the last one failing but I trust the dr and praying with both surgeries together it will help and releave someof my pain.
I am or sure about the surgery on a 5 year old but I do know he worked with pediatric children in Arizona before coming here!!!
Sorry so long it’s always hard to explain this in a short story
Let me know if u have any other questions 
And good luck to your son
Tara
Tara said:
Hello!
We had a good experience there .... He asked me to get a cat scan around my way before I came up there. Then when got there just did a full examination nurse does one 1st then he will come in and go over it. It's alot of questions. No big tests for me there! I sent all my records he brought us into a bigger room and went over everything from all my scans from recent to now.
I was a very nervous too because when his nurse called to make the appt they wanted me to come for a consult wend and have surg that thurs.. I didn't like that idea so asked to go home after the consult to think about it. My appt was on the 10th of April and surgery is next tues the 30th. He gave me alot of paper work and research about basliar invagnation which was very helpful
I had decompression surgery 5 years ago and just that for the Chiari what you read is correct because just the decompression surg was not helpful at all for me and until I went to Dr Rekate I didn't know why. Apparently the blasliar invagnation is what caused the Chiari on the 1st place. I am and was very skeptic about this surgery because of the last one failing but I trust the dr and praying with both surgeries together it will help and releave someof my pain.
I am not sure about the surgery on a 5 year old but I do know he worked with pediatric children in Arizona before coming here!!!
Sorry so long it's always hard to explain this in a short story
Let me know if u have any other questions :-)
And good luck to your son
Tara
Hi Tara!
I am brand new to this site and it seems that YOU are my clone! LOL !!!
Same exact circumstances with the previous decompression (mine was in 2010) a lot of issue following. Saw Dr Rekate and he concluded the same. Basliar Invagination and set up a surgery date for July 8th.
I am searching for those that have gone thru this procedure, and wonder if they would honestly be willing to answer even my ridiculous questions (considering we are coming from out of state - and leaving my little girls at home with sitters and family - makes me tear up just thinking about it)
If anyone is following or can post to add in some input on this - im stalking this feed ----literally....... Im a bit nervous about the procedure (ummmm its ANOTHER brain surgery, who wants that... EVER?!?!) so answers and input to help keep me on track would be great!
Thanks all!
Hello,
I haven't been on here in 15 months but here is an update on my now 7 year old. Jake ended up having a decompression with C1 and partial C2 laminectomy and O-C2 fusion last August 2013 with Drs Rekate and Insinga. He was discharged to go home after 5 days.
He did amazingly well, with no complications and absolutely no pain after about 10 days or so. (only OTC meds after a week). He wore a hard neck collar for the first week and then a soft neck collar for about 2 weeks after that, and then nothing. He initially lost about 70% of the mobility in his neck but had PT 2-3 times a week for about 3 months and almost immediately resumed swimming lessons (3 times a week) about 6 weeks post op and I'd say he had almost full neck mobility by about 6 months post op.
The only limitation that he has is a little loss of rotation of his neck but only his doctors and I notice. No one has any idea he even had surgery at this point if I didn't tell them. His central sleep apnea disappeared immediately when he woke up from surgery as well and his basilar invagination is 100% corrected.....now looks completely normal and Dr. Rekate said he was the worst case he'd ever seen in a child (95 degree angle before surgery and should have been around 145 degrees).
The only part in all of this I'm not thrilled about is that the Drs decided not to do the duraplasty with tonsillectomy during the surgery and his herniated tonsils are STILL down to almost his C3 vertebrae. The Drs thought that just removing the bone from the decompression and laminectomy would have allowed enough room for the cerebellum to shrink up on its own and it really has not budged even a bit. He will likely need a 2nd surgery in the future to correct this and it will be harder now that there is scar tissue, plus screws and rods in the way. Since he has never had any type of Chiari pain symptoms before or after the surgery, I'm taking my time on deciding whether to move forward with the 2nd surgery this year or waiting longer.