My chiari and other findings from a naval doctor!

[kinzer88]

MY NAMES KINSEY AND IN JULY 2009 I GET DIAGNOSED WITH CHIARI MALFORMATION. 6MM BELOW THE MAGNUM AND HE MADE IT SOUND SO SERIOUS IT SCARED ME LIKE CRAZY. FOR A WEEK I COULDNT SLEEP, I GO IN A WEEK LATER AND HE TELLS ME, " OH THE CHIARI IS NOTHING TO WORRY ABOUT, JUST FORGET ITS THERE". ARE YOU KIDDING ME, I HAVE EVERY SYMPTOM NONE FOR THIS DISEASE AND THEY LOOK PASSES IT. IM IN THE UNITED STATES MARINE CORPS, AND THESE DOCS COVER IT UP LIKE ITS THE JFK MISSING TAPE. IVE BEEN DIAGNOSED WITH TINNITUS, VERTIGO, DEAF IN MY LEFT EAR ALMOST, AND HAVE BEEN IN THERAPY FOR 4 MONTHS FOR TINNITUS AND VERTIGO, AND IT HAS DONE NOTHING, IVE TOLD THEM OVER AND OVER THAT THERES SOMETHING MORE WRONG THAN WHATS PORTRAYED, AND THEY JUST GIVE ME MEDS AND SEND ME ON MY WAY. I AM TAKING 17 DIFFERENT MEDS FOR ALL THIS CRAP AND AGAIN NOTHING WORKS. MY CAREER AND FUTURE IS ON THE LINE HERE, IVE ASKED FOR REFERALS TO CHIARI SPECIALISTS AND HAVE BEEN TOLD I CAN ONLY SEE NAVAL DOCTORS OR ILL HAVE TO PAY FOR EVERYTHING MYSELF IF I GO TO A CIVILIAN DOCTOR, AND THEY WONT PAY FOR ANYTHING! THEY SAY DONT WORRY BUT ITS ALITTLE HARD NOT TO, ITS MY GOD DAMN BRAIN FOR CHRIST SAKES! I DONT KNOW WHAT TO DO, OR WHO TO TURN TO. NAVAL MEDICINE IS TERRIBLE, AND THEY TREAT YOU LIKE ****. THANKS TO OBAMA, MILITARY IS NOT COVERED FOR HEALTH INSURANCE EXCEPT THROUGH A MILITARY DOCTOR. SO NOW IM REALLY SCREWED. IF ANYONE HAS ANY INFO, OR KNOWLEDGE OF WHAT I CAN DO? PLEASE HELP. IF YOUR MILITARY, IM ON MY SECOND LIMITED DUTY, AND IT ENDS IN AUGUST. THEN ITS PEBD. PLEASE HELP!

[tugboat2003]

Contact your VA and find a good rep they may be able to help you also, say if you live no where near a doctor now but after you get out they will discharge you home and there are docs with better reps there, just think about it.  I had no MEB at all nor did they try to give me one.   In the end though I am out and maybe would have liked to look into the board for other symptoms as well.

[tugboat2003]

Also, I think that you can get outside advice from specialist at no cost to you, ask more people about it.  Get the disabled vets involved call all different ones so you can get as much information as possible, there are holes to get you what you need..  

[tugboat2003]

Hey,
I just got out of the Navy, I had the same exact issues even after I mentioned all the symptoms just like you, I was told everything from you heard about it so you think you have it, then after a year and help friom this site I learned what I needed to do.  I demanded an MRI to rule it out.  They said the results were negative.  After coming back to this site I was told that most people do not know what they are looking at and that I needed to sit down with a neuro surg and go over the MRI.  

Thats when I demanded to see one.  I went to Bethesda and met with CDR Rosenbaum who has the most experience on the issue.  ((((Make sure you ask to speak with the suergon with the most experience in chiari))))   Turns out I did have chiari and the symptoms met with the diagnosis.  Had a decompression a year ago and feel a lot better.  

Doctor Rosenbaum is a great guy and I am sure if you call his office he can look at everything, even if you have to get it put on a cd or do a telephone consult.  Good luck from there.......

You need to demand that a Neurosurgeon out of Bethesda NNMC, which is your buddy Obama's hospital, named Rosenbaum if he is still there looks at you MRI.  Make sure everything is documented for service connected issues later should it get worse or come back......  Cover your ***.    Good luck

[selmaS]

Well, I hope u can find one that does care enuff to at least send ur MRI to a specialist.

Good Luck and thank u again for ur service : )

"selma"

[kinzer88]

Thank you. my docs are no good for cooperating. They get paid the same as and ordinary officer thats the same rank. They dont make the miliions. so its almost as if they do not care. PEBD is a Physical Evaluation Board Decision. Meaning if i get put on that they medically discharge me when its all said and done. ill get a percentage of disability but i cant rely on that to take care of my needs and my wife and daughter. im just so fed up with the way people just throw this out the window. all i can do i guess is just accept the situation and play along, hoping i score eventually and win. thank you for your concern, i really appreciate it

[selmaS]

Hi and welcome to the Chiari forum.

It seems no matter if u r in the military or civilian life we come across drs that just do not have current info on chiari....so many of us have also gone thru the same situation even if it is bcuz our insurance doesn't cover us getting to a specialist....so we feel just as trapped.

Ask the military drs if they will forward ur  MRI's to a specialist for review...sometimes it is a nominal fee of 40$...some will do it free. And see if they will take the advice of a chiari specialist as to what is going on with u...it is a chance for them to learn something, so they may be  difficult with this...especially those with a God complex that feels they know it all already......


May I ask what is PEBD?

We did have a member that was in the military, but I haven't heard from them in a while.....


We r glad to have u as part of our little family here and my I add Thank You for being a part of our military and helping to keep us all safe and free : )
I am sorry for the reason u had to seek us out tho......

"selma"