Can this diagnosis be true?

[Ttraye]

I am a 51 yr old mother of 4, and expecting my 4th granddaughter in May. Lss, I have had 4 neck surgeries, 1 FAILED back surgery. I went to a new neurologist, my old one went back home to his homeland, I have been having headaches, blurry vision, and dizziness on top of all my issues with a non working thyroid, adrenals, pituitary gland,  in my results of my brain mri it says I have a flattened pituitary gland half full of fluid in the sella? And a 4-5 mild tonsillar herniation Chiari Malformation type 1. Now I’m disabled in the past 6 years, I have got so bad in this passed yr I’m not gonna lie I truly just wanna stop this fight. But I can’t. My heart won’t let me. Anyway how do I have a whole box of mri, CT’s , and X-rays in a box over the last 12 yrs since my first neck surgery? How do I now at 51 have chiari? I truly don’t believe it, but while I’m writing with a head pounding, eyes blurred, a noise in my ears that is going to drive me batty, pain that gets worse everyday, choking on everything I eat, sounding like a man, but I did have a paralyzed vocal cord so I have an implant in it. So i have no idea where to begin, but I do not know if it will be with the neurosurgeon that has operated on me 2 times, that I have asked 2 times if I had this chiari? He said no. So I then read it can come along in life? I thought you are born with it? Help I’m so confused. And I’m very leary of having to possibly start a hunt for another new dr. Especially around here. I don’t do bridges. I’m so scared that this is true, but hoping it’s wrong..... help?

[Ttraye]

Thanks so much, I certainly will. I do know of a lady, she was supposedly getting me the info, that had a children’s chiari specialist do her surgery, so yes I know that to be true. Thank you for the list. I will try to look at them while reclining today. I did find a newer dr that works for a Maryland hospital, but is in a town only an hr from me, he was listed as 1 of the top 25 under 45 yrs old, in the United States. Do I private message you the same way that I do it for Facebook? I am still a bit slow to technology.. ty for all of your time, bless you!!

[selmaS]

When yougo to my profile page there is an option to private message......we must be friends first so I will send you that reqquest first if we haven't already and then I'll sned you a PM so you will see what it looks like and you can add to it.

[Ttraye]

I don’t know that I can go to either of these as this is a children’s only hospital as far as I know. The one dr I went to in Baltimore was A ortho so he wouldn’t be on our list and the other was finishing up his neurosugical last yr, he moved away not a month after he promised me the world. The one in Philadelphia was on the same page with my dr here so there was no need to go to philly. I have to babysit, thank goodness my husband could go because I don’t know that I could even do it, I feel like I am  rolling down hill very quickly. Thank you, I will message you as soon as I can. Ty for your time, I do appreciate it!!

[selmaS]

Here is a list of a few in MD for you to look at.


MARYLAND

Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD  20706
(7830 Old Georgetown Rd. Bethesda, MD
301-654-9390


Dr Marcella Madera
Primary Location:
The Johns Hopkins Hospital
600 N. Wolfe Street
Baltimore, MD  21287
Building: Meyer
Room: 5-109
Phone: [phone]
Fax: [phone]
Appointment Phone: [phone]

Dr. Powers
Bethesda, MD

[selmaS]

Here is NC.....

NORTH CAROLINA

Dr. Fuchs
Duke University
Pediatrics

Dr. Eric Rhoton
Carolina Spine & Neurosurgery
7 Vanderbuilt Drive
Asheville, NC 28803
828-255-7776

Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720
Primary: 828 684-1076

[selmaS]

And NY- NEW YORK

Chiari Institute
Great Neck, New York
[phone]
[phone]
· Dr. Harold Rekate
· Dr. Salvitore Insinga


· Dr. Rohit Verma
University Orthopaedic Associates at Great Neck
611 Northern Boulevard
Suite 200
Great Neck, NY 11021

Tel: [phone]
Fax: [phone]


· Dr. Sol Mora
Caremount Medical Group
600 Westage Business Ctr. Dr.
Fishkill, NY 12524

· Dr. Amit Shelat
200 Old Country Rd Suite 370
, Mineola, NY 11501
Phone:[phone]


Dr. Paolo Bolognese  MD
The Chiari Neurosurgical Center@ NSP
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
[phone]

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310

[selmaS]

Call regardless if it is a childrens hospital or Dr as I know somw in the past were more then willing to include adults with Chiari as patients....no harm in asking....and do not take things at face value...ASK !!..

[Ttraye]

I apologize, I thought I had messaged you back. I live in Delaware. I have a neurosurgeon in Newark that did my c5/6 and L4/5 surgery, which 1 of the 2 (done  3 weeks apart) resulted in the back not being fixed and a paralyzed vocal cord. I have been to Baltimore, Philly, I don’t want to put the names in unless you say it’s ok, but I got no where with either visits. So I guess this is a totally different issue... so yes, if you don’t mind I do need some guidance. I have looked around,     and I  have listened to videos, however my body is not up to going to 10 drs to find the 1 that may be the only true chiari dr. I have read that many will say they deal with it daily, but that may not be true..? So yes please, if you don’t mind, a few names would help guide me in some direction, from what I see there are a few in New Jersey, Pa, and Maryland. I wish I could see just 1 here.... but it is what it is. Thank you so much for your time.

[selmaS]

No names on the public forum but you can PM me...(private message) if you'd like. I went to Philly as well and it wasn't helpful I also went to a few Drs here in the LV and no help here so I went to NY and there are a few very well resected NS that treat Chiari and related conditions.
Below are names for you to research if either of the Drs you have been to PM me about it.

The list is not a referral nor an endorsement for those listed it is meant to be used as a tool to research Drs.
The list is compiled by the members here of Drs they have been to treated by and liked.....


DELAWARE

Dr. Jeffrey W. Campbell
DuPont Children’s Hospital
Wilmington, Delaware

Dr. Benjamin Warf
DuPont Children’s Hospital
Wilmington, Delaware

If you have other areas you want names for let me know.

[Ttraye]

Thank you so oo much. This is how my brain mri is written—— 4-5 mm of cerebellar tonsillar herniation consistent with chiari  type 1 mild malformati . I am so scared of all of this as the last 6 yrs I have steadily declined. My nerve damagliterally driving me crazy. I have not a clue where to find a dr, they are all so far away and  I ha ve been to a few that couldn’t figure out my neck and back issues along with the nerve damage.

[selmaS]

I know just how you feel, and I went to Drs all around my area and then knew I had to travel out of state to get the best care possible. Let me know where you can go and I will post a list of Drs for those areas....the list is not a referral nor an endorsement for those listed it is meant as a tool to reseaarch Drs.
Hang in there <3

[Ttraye]

I am having difficulty responding to your sight, I had the same issue last night. I will try to respond to you later, when I can figure out what the issue is. Ty

[selmaS]

Scroll to the bottom of this page to "contact us" and report what issue you are having, they will help you figure it out.

[selmaS]

Hi and welcome to the Chiari forum.

First there is a difference between Chiari and low lying tonsils.....Chiari is the malformation of the skull which happens inutero.....low lying tonsils can occur with a normal sixe/shaped skull....this happens due to a blunt force trauma, inflammation due to diet or infection......

You do not want a NS you want a true Chiari specialist , one that will look for ALL related conditions before talking surgery....surgery is not a cure or fix for this condition it is just a way to slow progression.

Many Drs do not believe that Chiari can cause us the symptoms it does.....so you deff want to research Drs.