I've been reading so much reviews and lawsuits brought against The Chiari Institute and I am scheduled to go there on Wednesday, June 20th.
Should I? Is he a credible NS?
I was concerned because they are only doing a MRI of my Lumbar Spine. NO Cine MRI? Why? I choose to send my MRI and info there because I thought with all the tests they perform on a patient they should definately know if I have a chiari malformation or not.
First, those lawsuits were done b4 he arrived to TCI, and were more or less an issue with the hospital staff....and TCI were the fall guys.
I had my surgery when all this was happening, and I am well pleased.
Dr R is head of TCI and I am sure is credible.
Sometimes testing is in stages, and sometimes mid testing they add things.....It could be he saw something on ur cervical MRI that he is looking at ur lumbar spine, he may suspect tethered cord.
And sometimes a CSF obstruction is evident with out a CINE, and sometimes they want to do these other tests first....
TCI would not bring u there if they did not think u had chiari, they only see patients they feel they can offer some help to.This is y the board reviews all files and they all agree on what patients to accept.
Oh good. Thank you. I have been just so worried. .
I cant find anyone who can watch my 3 boys so my husband and I are bringing them with us.He is having to take 2 days off from work and I was worried I was going to drag my family there and it was going to be another waiste of money and time.
No worries....TCI is one of the top locations for Chiari treatment in addition to Dr Oro, Dr Henderson, Dr Rosner...to name a few....
The waiting room is set up in cubicles each has a TV. depending on the age of ur boys u may want to take a few toys as well, and an insulated bag for drinks...my DH went across the street to the deli for sandwiches and we ate there....it can be a ling day, and if I recall, there was a park down the road, ur DH may want to take them down there for a bit too!
Do u want the other thread deleted since this is kinda the same question?
I saw Dr. Rekate the last week of November this year. I was overall impressed, I think he's definitely more knowledgeable than the average neurosurgeon about Chiari. He has taken part in over 200 studies alone for chiari, and just opened the institute for hypothalamic hamartoma at North Shore. Seems maybe that hypothalamic may be more of his baby.
HOWEVER, I was impressed that he was able to tell me what the "kink" in my brainstem was (something I asked my neurosurgeon about almost a year ago back in MI who said "I don't know"). He told me I have basilar invagination, a most common side effect from having Ehlers Danlos Syndrome. I did see a geneticist in the last year who told me I DID NOT have EDS, however - I was skeptical of his assessment findings & wasn't impressed. Dr. Rekate recommended I follow up with Claire Francomano in the Baltimore, MD area. She's an internist and supposed Ehlers Danlos Expert. I called the office and they stated I should call back in March 2013 to set up an appointment...
I'm kinda freaked out. I ended up emailing him after the appointment because I felt like he was vague with what I should expect... maybe he was cautious since I came out of state all by myself to see him. He prescribed me a script for an aspen collar for my neck pain. He told me I may end up needing to fuse my skull to my c1/c2 in the future. This means that I would only be able to turn my head 30 degrees... I was obviously upset at the thought of it.
What didn't impress me about him is that he didn't explain physiology and signs and symptoms to look out for in the future regarding the basilar invagination. He also didn't lay a finger on me for a neurological exam... I was hoping he would compare his findings to what Dr. Heffez found in February.
HI Gina...I would think u have a better group of Drs in TCI then at the other location and u have a better understanding of ur kinked brainstem....
It is also known as a retroflexed odontoid....and it is common for those with EDS to have this issue...more so then those that do not...
His personality may be different, but know there is a group of Chiari specialists at TCI all able to help u...I also went to TCI and had my surgery there this was b4 Dr R came....and I know he has made many changes, but the one thing that remains constant is they r one of the leading researchers for chiari and related conditions.
I just had my appt at TCI yesterday and saw Dr bolognese. My husband and i were extremely impressed with the place and through Dr. I was told i have no other option than surgery. I feel confident knowing that i found a place with a reputable reputation. And a highly skilled ns.
I too was told by Dr. B at TCI that I had no other option besides surgery. That was 5 years ago and that was a lie. Chiari is not curable and the surgery can do more damage than good. Surgery for Chiari should only be done as a last resort and Dr. B does not impress me as a person overly concerned with his patients if they are not interested in surgery. TCI stopped answering my questions, after I flew across the world for my consultation, when they realized I would not have surgery. Be careful and good luck.
Wow I am sorry to hear of your negative experience. I am wondering how big is your herniated and did you have any CSF issues - or anything else going on? I am just wondering why he was so set on saying surgery was the only option..
Hi....a NS only does surgery, if u did not want it I am not sure what u wanted them to do?
This is always the patients decision as to have surgery or not, unless there r life threatening issues surrounding the decision.
The only thing u can do once u decide not to have surgery is find a NL that will help u with PM or PT or what ever u need.....some do not require surgery, and bcuz Chiari symptoms flare can go several yrs with no issues.
We all have to decide what is best for ourself, and hope we made the right choice in going forward or not and which Dr we use.
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