Chiari Online Support Group

Possibly, Finally Found a Neurosurgeon


#1

Hi Everyone :).
I have probably a first positive update. Over the last two months, in the area of NY state, I’ve learned two things, which have lead to something positive. (1) Neurosurgeons in this area who specialize in Chiari, are no longer taking Chiari Patients, and (2), all neurosurgeons in-network for Tri Care Prime (insurance), are all either pediatric neurosurgeons or general neurosurgeons who have never dealt with Chiari.

So here we go. I went into the city, and walked into the neurosurgery office of some of the best neurosurgeons NY/NYC has to offer. I spoke with three amazing ladies in this office, and folks, I feel more positive about searching for a neurosurgeon because of them. These ladies who work for a neurosurgeon who specializes in Pediatric and Adult Chiari, who I am trying to get my first appointment with, were amazing. They had me speak to them about how my symptoms started, how they’ve progressively worsened, what imaging I’ve had done and what the results state, they explained that likely my tethered spine is a result of both Chiari and my Scoliosis (had scoliosis fusion in 2006), and that my neck issue could be an issue as well alongside the Chiari. They are shocked my spinal surgeon has not written a recommendation for surgery; they are not pleased that neurology tried to misdiagnosis me a second time in my life; and that not happy neurosurgeons I’ve seen are pediatric, do not specialize in chiari at all, or have flat out turned me away.

Long story short, these ladies took my full records, imaging results, imaging dics, and my fully typed symptom list. So all of those who told me to type up my symptoms on here, thank you!! It’s helping a lot. They took my name and contact information, and as of tomorrow will have this neurosurgeon start reviewing my records and imaging and make a determination by next week if I will be heading into decompression surgery immediately, or starting treatment and then surgery. They even are helping me figure out programs within the hospital that help cover full medical bills, or a great majority of them, which is a huge help.

I’ve always worked and paid my bills, and all I want is to become a police officer, and an author, and help people, and be able to support myself and my two dogs. To ask for help financially for a neurosurgeon, I wanted to cry in that office, but there help and belief that I’m being honest, just made today much better, and them getting a neurosurgeon to take my case, made my week even better. It’s nice to find a neurosurgery office where the staff are intellectual in Chiari, specialize in Chiari, but also listen, are empathic, and understand. It’s a great feeling, makes this long, painful journey worth it. Makes fighting worth it.

For all those struggling to find a neurosurgeon, keep going! Don’t give up! There were days I wanted to, and had to fight myself to make sure I didn’t give in and give up like I wanted to. It’s hard, but you can keep pushing forward :smile:.


#2

What a great outcome for you, fantastic. It’s not often we hear of such assistance. As the neuro community is comparatively small, if a neurosurgeon has made an assessment often other surgeons won’t go anywhere near reassessing let alone questioning the previous assessment.
But even to obtain a listening ear is a plus and can be such a relief that at the very least someone has listened to your concerns. Please do let us know of the outcome either way.

Merl from the Moderator Support Team


#3

Hi Merl!

Thanks! I have noticed that. A pediatric neurosurgeon said my Chiari was “mild” and that my cerebellum being longer than it should be and being in my neck wasn’t a concern. So to have this neurosurgeon actually want to review the records, make a decision, it takes away some stress from this whole journey. Those ladies in his office were unusually knowledgeable, honest, and great listeners, and them willing to help with getting me the review and also the financial programs — huge help. I hope more patients with Chiari find offices who are kind like this. I will definitely have an update once the neurosurgeons office contacts me next week with his decisions and findings. I guess there’s always one doctors office who will be kind, they are just the diamond in the rough and hard to find! (Lol).


#6

And my other concern is, do their financial programs apply to people outside of NYC and Long Island, says on their website they don’t. And since none of the clinics and hospitals who specialize in Chiari take my insurance, and I cannot afford any out of pocket bills nor can my husband since he’s military and his income puts us in federal poverty bracket… I have to get into programs where my medical bills are either covered or at least 90% covered by financial programs in the hospital… and it doesn’t seem like this place in Long Island provides assistance unless you’re a resident of long island or NYC. And that’s a great concern. I’ve already been told I’ll be a “charity case” financially, since my husband cannot afford out of pocket medical bills, we are pay check to pay check, my family cannot even afford to pay, and the ones who likely could help clearly won’t.


#9

Hi there LiLWriter,
My name is Casey, and although I live in the Seattle area now, I was born and raised in NY.
I am struggling to find a neurosurgeon I trust, or any Chiari specialists out here that do not have a 14+ month waiting list. Could you provide any contact information to the doctors you’ve found in NY? My entire family lives in the Orange/Rockland/Westchester area and traveling to the East Coast to see a doctor is totally doable.
Thank you, truly.

Casey


#10

Hi CaseyG,

Do you want me to send a message to you directly on here with the names and contact information of Chiari Specialists that I’ve found? They are all NYC/Manhattan area, the ones in Westchester County are general neurosurgeons who have no experience with chiari, or they solely have experience with strictly pediatric chiari cases and not adult chiari cases. And I have heard there are some Chiari Specialists in upstate New York, just not sure where they are located, too far for my family to afford the drive. Let me know, and I’ll send a message with that ones I have found. :slight_smile:


#11

There is a reason Why so many “Chiari Specialists” aren’t taking Patients

I suggest anyone looking at the former associates of the North shore chiari center look into what lead to Thomas Milhorat’s retirement and Bolognese seeking “other opportunities.” There is a lot more out there than just the multi- million dollar law suits and settlements in the news.

There is a reason why so many Chiari specialists have retired, left the country, or are in prison. Surgery is seldom a long term solution for most conditions “associated” with Chiari. (Although there are certainly times when it is appropriate). If decompression e!iminated the cause of these symptoms they rarely if ever would return. It is a very simple surgery as it is the beginning and end of every brain surgery.

There is a reason it is performed rarely in academic centers, and it’s NOT lack of experience or knowledge. Chiari is well known. What is not well known is whether chiari surgery is effective for non specific symptoms an in the abscence of a syrinx.

What many experience is indeed unpleasent and debilitating and sadly in past years a lot of “surgeons” have made a boatload of money offering a “cure” for the condition with very poor Data behind the surgery. There are fewer anfewer of them left “retirement,” prosecution, loss of hospital privleges, and even some leaving the country to avoid litigation are among the reasons. There times when it is necessary, BUT, only with second and even a third opinion and in an Academic enivronment. That doesn’t mean finding a surgeron after multiple doctors who offers a “cure” or what you so desperatly want to here. You first a victim of what is causing your symptoms don’t be a victim of someone offering hope (for 50 - 100K)

FWIW Bolognase and Milhorat made in excess of 10 million each their last years at Northshore. Bolognase isn’t even a board certified neurosurgeon but has built a “reputation” as such through involvement in “Non Profits” and Chiari Societies. There is a reason he (and reference to he) is not welcome here (as is any clinic, hospital, doc etc trolling for business,and we remove those references. We will continue to do so in every instance.

TJ


Looking for NY doctor recs
#12

Hi LiLWriter,
Sorry it took me so long to get back! Yes, please send all the information you have. I appreciate it so much! Thank you! How are you feeling?

Casey