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The Chiari Institute (NY)
Hi Everyone. I am trying to get an appointment at TCI in NY. For those of you who have already been there - did you just call and leave a message for an appt. or did you fill out the paperwork on the website and mail it in first? My neurosurgeon just told me to call, but it has been over a week and I called 2x with no return phone call as of yet. Any advice would be great?
<3 Jenn
<3 Jenn
He is a great doctor... I will wait and see what happens within the year and think about the surgery in the meanwhile.
I waited almost 2 years from dx. and almost a full year after seeing Dr. B. Be well!!
COMMUNITY LEADER
That is a wise decision, go slowly and listen to Drs that know ...and see if u have ne changes in how u feel once u treat some of the other issues.
Good luck and keep us posted as to what u try and how it works : )
No CSF obstruction.. I am going to hold off on surgery for a little b/c with all of my other dx's Dr. B is not sure how much success I will have with the surgery..
COMMUNITY LEADER
Hi,...I am so glad u got so many answers.
Do u have a CSF obstruction? If not, and u can manage u may want to hold off on surgery....with related conditions, the Drs do need to take precautions during surgery to help avoid set backs....
U r in good hands and Dr B will let u know if and when u may have to face surgery....good luck in what ever u decide is best for u.
Hey ... So I went to TCI and absolutely loved Dr B. He said I am a definite candidate for surgery.. and I was diagnosed with EDS- hyper-mobility type 1. So now I am the typical Chiari patient (as Dr B. says).. I have Chiari, POTS, and EDS...
I was thinking Selma- and awhile back you said I should be checked for EDS and you were directly on the mark!... I have time to think about the surgery .. He says there is no way to know if my Chairi is causing all my symptoms or the POTS.. b/c the symptoms are mimicking each other... So in a nutshell .. he said he could not tell me if the surgery would help me a lot.. but I have to think about it and will see...
I was thinking Selma- and awhile back you said I should be checked for EDS and you were directly on the mark!... I have time to think about the surgery .. He says there is no way to know if my Chairi is causing all my symptoms or the POTS.. b/c the symptoms are mimicking each other... So in a nutshell .. he said he could not tell me if the surgery would help me a lot.. but I have to think about it and will see...
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am sorry u had a frustrating experience, and I am sure there may be something that was said that mayb u r over looking?
Not that I am trying to explain away how u feel, but I know they r very busy and only see those they feel they might be able to help...with those in the most dire need seen first....
I had my surgery with them back in '09....seems like a life time ago already....
May I ask what issues ur child is having that u wanted to go to them? Who did the original surgery?
I had the same experience with them - complete frustration and no desire to help me. I never even got a chance to go there...I was blown off just in sending my stuff for review and a thorough letter explaining everything. I then emailed Dr B directly begging to be seen and the nurse that works with them called me to say they already told me "no." I was willing to pay out of pocket just to see him and get the correct testing. I was told they'd get back to me - it's been 4 mos and nothing. I find it absolutely disgusting that they claim to be the "best" but clearly do not even try to figure things out. Do they have a quota that they meet and I happened to contact them at the wrong time? Not sure, but find it hard to understand when others who have the identical issue as me have been able to go and get help. I'm happy for those that get help there....just seems like it should be fair across the board for those that suffer with the same issues!
As a mother of a surgical Chiari patient let me tell you we went to TCI on 3/18/2013 and left in complete frustration. They were no help at all and I traveled 6 hours for nothing. My child had surgery in 2007 with relief of headaches for 3 years and now has headaches and severe leg pain. She has been through every test , so we thought we would try the "best" in the field. Complete failure!!!!
I'll be seeing Dr. Bolognese... I will give you guys an update on what he says soon!
COMMUNITY LEADER
Congratulations !! Do u know which of the NS's at TCI u will be seeing?
Good Luck Friday and do post updates : )
Finally got my appt with TCI next Friday... I'll update you and let you guys know how it went...
Im sorry to hear this. It is really such a shame how barely any doctors really know about Chiari Malformations and the severity that comes along with the dx. I have been trying to find someone with some intelligence since Feb of 2012 and am now in the process of trying to get an appt. with TCI after my 3rd brain MRI tomorrow!... I wish you the best of luck..
COMMUNITY LEADER
If u have a syrinx already this is more of a u have a CSF obstruction and it could lead to perm nerve damage if this is not taken care of unless ur syrinx is due to a trauma....but still should be monitored,...
I have no idea what these Drs r taught regarding Chiari, but I can tell it is not much....ugh
The thing is, most Drs look to the herniation as it is Chiari, but Chiari is the malformation of the skull, and it is too small which forces the tonsils to herniated....a 2mm herniation can cause symptoms as it is the obstruction and the width not how long the tonsils r....but how it is affecting the person.
Find true Chiari specialists they do their own research and have a better understanding of how it affects us...plus they look for the related issues and conditions b4 they suggest surgery and have the most experience if a surprise pops up....
I have ACM 1, 5 mm with 1-2 mm syrinx. Have lifelong history of all sorts of weird neurological issues.
Original ACM diagnosed by Drs. Hill & Thomas radiologist while seeing a Cleveland Clinic Doctor in Cleveland's Neurological Dept.
Presently, I just need to follow up with someone every so often for chronic Migraine with Aura & other symptoms that come and go all the time. So, Cleveland Clinic finally got a Neurologist in the suburbs. My initial office visit with this Doctor, I explained that I just needed someone to follow up with for the ACM 1 & various symptoms that flair up. I presented this Doctor with my records, films (Cleveland Clinic has all their records online) so this doctor can see all my past visits with their General Physicians for the flair up things. But I also had records when I was diagnosed which were before they had their records online. Anyways, I just needed some paperwork for my Insurance company from this Doctor and the Doctor stated that he could not note my ICD9 (diagnosis code) as ACM 1 because it was minimal. (Although my MRI records from Drs. Hill & Thomas indicate 5mm) which from everything I read about Chiari 1, 5mm is considered Chiari 1. I also have had follow up MRI's with CCF and UH. CCF MRI made no mention of the Chiari. UH's MRI mentions it but again states it is minimal. My original MRI where it states it is 5mm was in 1999 & was film. I really feel CCF and UH are not understanding of Chiari 1 and that it can be with symptoms and are unsympathetic to a 5 mm herniation.
Also, the physician that I have seen at UH also did not make note of my diagnosis as ACM 1 because I was told by his staff that he could not find a ICD9 code for it. When also asked why he did not make not of Migraine with Aura and instead noted my condition as Migraine, I was told by his office staff that he had told them Migraine is Migraine.
I am tired of not being listened to and paying money for office calls and not getting results as to what I am there for. I am starting to take the approach of another lady on here, that I had read her posts, and am now questioning the doctors nurse first to inquire with the doctor if they 1. know anything about Chiari 1 and 2. if they believe someone with Chiari 1, 5mm can have symptoms. Because if we are not on the same page I am not going to waste anymore of my time or any of their time, from now on.
Original ACM diagnosed by Drs. Hill & Thomas radiologist while seeing a Cleveland Clinic Doctor in Cleveland's Neurological Dept.
Presently, I just need to follow up with someone every so often for chronic Migraine with Aura & other symptoms that come and go all the time. So, Cleveland Clinic finally got a Neurologist in the suburbs. My initial office visit with this Doctor, I explained that I just needed someone to follow up with for the ACM 1 & various symptoms that flair up. I presented this Doctor with my records, films (Cleveland Clinic has all their records online) so this doctor can see all my past visits with their General Physicians for the flair up things. But I also had records when I was diagnosed which were before they had their records online. Anyways, I just needed some paperwork for my Insurance company from this Doctor and the Doctor stated that he could not note my ICD9 (diagnosis code) as ACM 1 because it was minimal. (Although my MRI records from Drs. Hill & Thomas indicate 5mm) which from everything I read about Chiari 1, 5mm is considered Chiari 1. I also have had follow up MRI's with CCF and UH. CCF MRI made no mention of the Chiari. UH's MRI mentions it but again states it is minimal. My original MRI where it states it is 5mm was in 1999 & was film. I really feel CCF and UH are not understanding of Chiari 1 and that it can be with symptoms and are unsympathetic to a 5 mm herniation.
Also, the physician that I have seen at UH also did not make note of my diagnosis as ACM 1 because I was told by his staff that he could not find a ICD9 code for it. When also asked why he did not make not of Migraine with Aura and instead noted my condition as Migraine, I was told by his office staff that he had told them Migraine is Migraine.
I am tired of not being listened to and paying money for office calls and not getting results as to what I am there for. I am starting to take the approach of another lady on here, that I had read her posts, and am now questioning the doctors nurse first to inquire with the doctor if they 1. know anything about Chiari 1 and 2. if they believe someone with Chiari 1, 5mm can have symptoms. Because if we are not on the same page I am not going to waste anymore of my time or any of their time, from now on.
WOW that is horrible and I am so sorry to hear that! My malformation is 8mm and I was also recently diagnosed with POTS. I have looked at the question form on TCI website and like you almost every symptom I will be checking off. That is unbelievable.. I am having another MRI Thursday and then I will begin the process to attempt to get an appt with TCI. I will let you know how it all works out - in the meantime I, like yourself will continue to suffer until someone who knows what their doing can help!!!
Besides all the paperwork that you have to fill out (forms on their website), it seems to depend what day you get them and what mood they are in as to if they will see you. Despite having upper cervical instability, a retroflexed odontoid and a 5 mm herniation, and completing their symptoms check-list with just about every sx checked off, along with my sob story of my debilitation from all of this.... I was totally blown off! I was devastated. I was told they couldn't help me, with no reasoning as to what basis they decided that. I was then told by other patients to directly contact Dr B.... he read my email and forwarded it to the nurse, who must coordinate for everyone, b/c she called to tell me that they already told me they can't help me. I told her I wanted Dr B's opinion. She said she'd get back to me. I've heard nothing...just another blow off. I must say how disgusted I am when they make themselves out to be THE chiari place and don't even give patients a chance to try to get help. I have read so many pt accounts and chatted with many patients that have the identical problem as me and had surgery and are doing wonderful....yet I can't even get an apt. I hope you have better luck. I'm still desperately trying to get help from someone, while in the meantime my symptoms and function worsen!
COMMUNITY LEADER
With TCI u must fill the forms and send copies of ur MRI's in order to be considered....
No worries...it may take a few weeks 6 to 8 as they review them once a week....so be patient.
Ok - My neurosurgeon in Staten Island said just call!! What a jerk ughh.. I'm starting to wonder if any of these doctors around me know what they are talking about... I have my next MRI Thursday - so after that I will get that report with all of the many other reports, fill out the question form and pray they call me back asap.! Thanks
COMMUNITY LEADER
Hi....I went and had my surgery in May of '09....I was at a Chiari conference and met Dr B...and we e-mailed back and forth...he told me what testing to get as it was out of state for me, then I used their site to see how to get an appointment...they have forms u need to fill out...I made copies of all the MRI's I had on disk and the reports...and sent it all together....they review and decide if they can help and then call u with an appointment.
Use the forms on their site.http://www.chiariinstitute.com/patient_forms.html
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