I went to my appt with Neurologist !!!!!?????

[Stargazey]

This guy totally ignored any of the MRI's, CT's, Lab.  Dismissed the MRI report dx the Chiari.  Said I was born with it. Then he said let's get down to the cause of the Headaches!!!! Told me not to take Imitrex. It' s the only thing that takes the edge off so I can at least see, and rest.Said I should be taking COq10 which I do. Fishoil, and B2. Also want me to take Topamax 25 mg once aday.  Wanted to do another set of EMG. Because he thinks he does a better job than the Dr. that sent me to him!!!! I am so upset.He didn't test my gate and why I lean over to the side when I first get up and start to try to walk. Why I am in the wheel chair, because I cant walk when I go shopping with my family after maybe 15 mins. Why my head feel like its going to explode when I bend over or heaven forbid sneeze. I am sorry, I guess I am little upset. He wants to find out why I have headaches and prevent them. He said to me Have you heard of prevention Medicine? The little jerk!!! I was a nurse for 30 years. Yes I have. Then he said while he was doing the mental acuity test, you must be a little intimidated by my white coat!!! I told him no, I've worked around docs like him alot before I was forced to retire because of my health.  PLEASE HELP ME SOMEONE, I NEED TO MAKE THESE PEOPLE UNDERSTAND.  WHAT CAN I DO.?  

[selmaS]

I am sooooooooo sorry u had to go thru that! Unfortunatly it happened to me as well and I found out that if the NS is not a chiari  expert ( 200 chiari surgeries per yr) then u need a diff NS!!! Did u contact ASAP...or chiari people for experts in ur area?

I hope u find the right dr for u soon.

"selma"

[Stargazey]

I am sorry for going nuts!!! I found the web site  re Chiari in Scottsdale, Az. and sent them a email and called them. I also checked out the Colorado site. My husband says, be patient,(not my best attribute) and we need to take one step at a time. Unfortunately, if I go forward one I fall back 2 or more (I feel.) So the next step is to see Dr. Curtis Dickman on Nov.10th at Barrows Neurological in Phoenix. If no help there, I guess I start somewhere else.  This is all soooo tiring. I just want it fixed. !!! See, told you I was impatient. Thanks anyway, you are a sweetie, just like my daughters.

[selmaS]

I was just as upset as when it happened to me when I read ur post...I know exactly what u r saying.....I am glad u found someplace close by that may be able to help.....if u get to CO I know u will be in very good hands.

I am just as impatient....and am ready to tell my PC to take a hike, but I need to find another dr first.....it drives me nutz also!!! lol....

keep in touch
"selma"

[ChiariPeopleOfOhio]

Dearest Stargazey,

I am sorry to hear of your difficulties getting the medical communities attention AND proper treatment.  I must agree with SelmaS - You need to find a Chiari expert - Otherwise you will (unfortunately) be run through the mill and diagnosed/treated with everything but the underlining cause, Chiari Malformation.  They want to diagnose things they are more aware of, like: Fibromyalgia, Migraines, MS, PTC, etc.  

FIRST SIGN SOMEONE IS CLUELESS ... Calling it "Arnold" Chiari Malformation.  If they had any understanding of this condition at all they would never put Dr. Arnold's name in front of Dr. Hans Chiari's as he never "added" anything to the description of the malformation.  "Arnold" Chiari Malformation name is out-dated and should never be used by the medical community.  

I jumped through every hoop the medical community handed me for 40 + years before I was properly diagnosed in New York.  Now I don't put up with ANYONE's bull.  If a doctor gives me the run-around, I say goodbye and literally walk out on them.  I don't have time for repeated alternative diagnosis when the issues I face are caused from my Chiari.

You need to seek out Chiari experts.  I met Dr. John Oro' in Washington, D.C. and again in Billings, Montana (both Chiari medical conferences).  He is a wonderful man ... doctor ... advocate for the Chiari community.  Google his website, ChiariTimes.  From what I understand, he is well-versed on Chiari and related symptoms!  I believe he is closer to you than other experts.  His patients seem to respect and love him.  I only know him from a professional standpoint, but our conversations were educational and I walked away quite impressed!

I live in the Cleveland, Ohio area.  We don't have Chiari experts in Ohio, although a few make those claims (they have potential, don't get me wrong, but are light-years from the classification of experts).  I hope to change our state's status regarding understanding Chiari and related conditions through continued education.  We are working diligently on a Chiari Medical Conference here in Ohio.

If you want to talk, don't hesitate to contact me!  We are all here to help each other!

May your days be filled with what is MOST important in life ... love, kindness, compassion, respect, understanding, faith, and relief!

In the spirit of "paying it forward" ... With kindest remembrances ~ Namaste,

Nicole

[Stargazey]

Thanks for your support.  You are a little angel.  I feel so helpless, angry, sad, and out of control all at the same time. It's amazing.  I am usually the one holding everyone else together.  But here I am......This is a side of me my children haven't seen.  Bless their hearts.  There mom is not super Mom after all.  My husband is my support and friend, he is trying his best.  I appreciate everyone in the community (Chiari) who has been communicating with me. A BIG HUG to you all.!! I am tired though now, so talk soon,
"Stargazey"M

[selmaS]

I truely do understand, and I want u to know u r not alone.I sit here and look at all the things that need to be done and I just can not do it anymore.I have been testing the meds I was put on and all it does is really fog me out of it.....to reduce pain I sit.....if I do nething I can't move the next couple of days.....so till I get to the drs that know what and how to treat this, I am going to be patient.......hang in there with me!

((((hugs))))) back to u!!

Godspeed
"selma"

[Stargazey]

I'm sorry. You are going through it too. I feel for you. I will hang in there with you. What have you been doing? How long? I know all about looking at things that need to be done. Sounds like we are both a little OCD! lol. Sometimes the things around us are all we can control.  Since we can't control what's happening to our bodies.I'm lucky, I guess, I have no little children running around to worry about. They are all grown up. No Grandbabies yet. Now that is something to look forward to!!! A HAPPY THOUGHT!!!  I am going to try and not get discouraged. I will keep on trying. We will get there together ! Promise ? !
Hugs to you too, sweetie, :)
God Bless,
"Stargazey" M

[selmaS]

Well, no kiddies here either...my only kid, my daughter lives in NY and I've been to two NS that were usless, so now that my daughter is settled I can stay with her to see the NS in NY at the Chiari Institute.....my peoblem right now is my PC not calling back...it's over a month that I am waiting on my Cine MRI to be scheduled....NY needs it and it'll be covered by my insurance if done here!....I have been to drs since I was a kid in grade school...just dx this past Feb '08- I was always told it was anxiety...ect....

Step by step we can do this!

Godspeed
"selma"

[razzle5150]

that is what I keep stressing  once you have been diax you need a Neurosurgeon not a Neurologist . Did you find any from that list I sent you ? So please see a Neurosurgeon.

[razzle5150]

Dr. Paul LaPrade
6036 North 19th Avenue #504
Phoenix, AZ 85015
(ph) 602.242.0299


Dr. Carrie Walters
345 E. Virginia
Phoenix, Arizona
(ph) 602.254.3151
(ph) 602.481.0849

Dr. Barry Kriegsfeld
345 E. Virginia
Phoenix, AZ 85004
602-254-3151.

[razzle5150]

also this dr.
Dr. Harold Rekate
iF A DR. says for children double check with them because some of them see Adults

[Stargazey]

thanks for the drs. names are they all specialists? I have an appt with Dr.Curtis Dickman a Neurosurgeon at Barrows.  This Chiari will be an additional dx.with all the other things I have going on. I don't know if he knows about Chiari or not, but I've been waiting since Aug. to see him. I guess if he can't address the Chiari, I'll find someone who hopefully can.   Thanks again., Stargazey

[razzle5150]

yes they are and you need to see one of them for your chiari .

[Stargazey]

I called drs. 254 3151, one of the Dr. retired. and the other one isn't practicing there anymore per the practice mgr.  she didn't know who Dr Rekate was. Dr. LaPrade doesn't do this type of surgery anymore, they referred me to St Joes Barrow Neurological. They didn't know of any other  neurosurgeons who specialized in Chiari.
Thanks Star

[razzle5150]

here is Drs R website and I was told he does see adults

http://www.thebarrow.org/About_Barrow/Bios/Group_3/Rekate_Harold_L_MD/index.htm

[Stargazey]

thanks, again. I am checking him out today. I am glad you are persistent, I was giving up, and just deal with the pain. Thanks. star(Mary)

[phoenix63]

I feel for what you are going through, I too am going through all or pretty much the same thing. I worked as a medical assistant ,and with many different doctors, for 25 years, But this sure didn't prepare me for how docyors do things now, they can't pick up a phone and communicate with the patient, with your other doctors, and make your own appointmnents? what is that about? what happen to patient care. I think it has changed to miscare instead. But listen hang tough,I want you to know you are not aLONE.
WE need to fix this about medicine, I am afraid it will get worse, not better.But for now take care of yourself, and lol ,with much love
suzanne