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Avatar universal

I was just undiagnosed.

Well I went to the neurosurgeon today.  My appt. was 12n.  I was taken BACK at 12n.  A nurse practitioner did my neuro exam which btw left me bleeding from a saftey pin which I was pretty unhappy about.  I know they have to poke me but uh..that hard?!

She left around 12:15.  Half hour goes by.  Then an hour.  Then an hour and a HALF.  Finally somebody pokes their head in to tell me they didn't forget about me.  Great.

1 hour and 45 mins the Dr. finally comes in.

He sits down.  Looks at my MRI.  Draws the line for where your tosils should be.  Tells me mine are right.  Both reports were wrong.  I can clearly see my brain hanging below this line.  Not far but it's below it.  I look at my dad.  Wondering if I'm nuts or if we're looking at the same picture.  My dad is making this are you blind face.

He then tells me I do not have chiari one.  And if it's not down to your 4th vertebrae it's not a problem.  He undiagnoses me.  He then looks at the report of my neuro exam done there.  Tells me my case is "complex" and says he sees obvious neuro dysfunction but it's not chiari causing it.  He doesn't know.  That's not HIS job.  Go back to the neuro for some new meds.  Then call Jefferson Headache clinic, they'll find out what's wrong.


I really don't even know what to say.  I really don't.

I'm realizing at this point I'm stuck living this way.  I think  I have come to terms with that.  If I didn't I know I need to, because this is going to be how it is.
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Avatar universal
Usually the university medical centers / teaching ceners will review the case for no fee if you you are inquiring about being seen by their NS.  

Since you have had multiple views, can you find a NS and ask the question - why are there such differing opinions about Chiari I by specialists within in the same field?  Is it because there isn't enough research.... because they don't have enough experience, as in volume of patients.... too may theories....?  Isn't there a standard protocol to start with?  Maybe if someone could explain that to you, then you could have more insight as to the provider's frame of mind and reference.  University of Miami Miller School of Medicine is supposed to have top NS docs.
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Avatar universal
Glad you are feeling better!
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Avatar universal
Thanks again all.  I'm going to my PCP today.  He has the mindset that chiari is DEF. causing my headaches but that's IT.  Luckily it's enough to get the referrals I need because if he doesn't give them to me I can't see anybody.  I'm going to get the referal for hte Headache clinic and pain management today.

My oldest son with Aspergers/ADHD has been SO messed up by daylight savings he's had me up at 5:30am daily.  

However by some pure luck last afternoon around 3 I just suddenly REALLY tired.  I put on shows for the kids and must have nodded off for about 10 mins.  When I woke up just like that the two week headache BROKE!!!!!!!

Woke up this morning headache free also and morning is when it's at its worst.

I'm hoping I can get at least a good WEEK in which would be GREAT before it comes back.

I hope you are all well.

I'm also mailing my MRI to the chiari center.

This is all so ridiculous.
Helpful - 0
Avatar universal
As the others say, Don't give up! Keep going and trying. Advocate for your health. It took me a long time to get to a doctor who not only believed me but knew anything about Chiari. Seems far and few between. Good luck and I hope it all goes well for you at your next appointments.
Helpful - 0
Avatar universal
I have had success with pain management.  I love my pain management doctor.  He makes more sense than any doctor I have been to.  I also have bulging disc, so he injected my disc 3 times before they found the Chiari.  Once they found the Chiari, he wouldn't touch me with a ten foot pole...so, he started treating me with meds.  I take Lortab every night to get through the night and then one during the day when I am having a bad day.  He also gave me Midrin for the headaches and this has helped.  I am also on Neurontin 1200 mg a day.  He does not manage the neurontin, my NL does.  I started out at 100 mg of Neurontin a year ago and have progressed up to 1200 mg.  However, the horrible pain/headaches are under control.  Occasionally I get a bad one, but not almost every day like before.  I think a pain management doctor would be a great option for you.  Let's just pray its a good one like I have.  
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Avatar universal
Thanks SO much everybody. <3  After sleeping it off I'm feeling a BIT better.  The NS wants me to go back to the NL.  The NL is the one who diagnosed me with chiari.  I liked her so I'm going to go back, she wanted to see how I made out anyways.  I'm also going to go forward and make the appt. with Jefferson headache clinic.  I know I will WAIT.  Possibly four months.  In the meantime I'm working a two week headache here and eating upwards of 1000 mg of advil a day.  I just CANT continue like this.  I'm going to get a referal to a local pain management clinic I have to at least TRY.  If it works it works if it doesn't well I'm used to it, and no love lost.

Today I'm going to call around to the Chiari specialists and see if any will read my MRI.  I don't mind paying.  I just want it read by somebody competent.

From there I hit a wall.  Because if they say yes I have NO way to PAY for it.  So harsh reality is I'll be stuck either way.

My one MRI report said 5mm herniation.  The other one said normal position.  

My one son has Aspergers and SEVERE ADHD.  My other son has a genetic kidney disorder that's REALLY rare.  I NEED to be on my toes in my house.  They are only 7 and 4.  

Has anybody had any success with pain management?
Helpful - 0
Avatar universal
Don't give up.  Just don't give up.  I went through the same thing.  MS workups, pain management specialists..anti-depressant drugs pushed at me because "nothings wrong".  The radiologist totally missed my 8mm herniation on first brain MRI, further more he even documented in the report my cerebella tonsils were normal.  Keep pushing, keep pushing.  I had NL order another brain MRI after continued pain and discomfort..there it was right in front of another radiologist..8mm herniation.  I have been to 3 well known medical universities who have all told me something different..all agree I have chiari, but all disagree on how to treat it and whether to operate on my herniated disc versus the Chiari..ALL of them disagree, talk about frustration.  I finally, FINALLY after a year bit the bullet and am traveling 8 hours to a Chiari specialist.  Follow your heart.  Once I gave in to make this appointment, I had peace.  Find a place and talk to people who have been there.  You will find that your situation has happened to almost everyone.  The hardest part for me to understand through all of this is the fact that neurosurgeons are ignorant to this malformation.  You would think a NS would know everything..I mean they are brain surgeons..but they don't.  I know more about Chiari than most neurosurgeons in my state and surrounding states...ME, I know MORE than they do.  So, don't give up...you have the wrong doctor...keep going...keep going if not for you, but for your children who need you.  Please keep us posted.  I just HATE to hear these type of stories.  Why do we have to go through this I just don't understand.  Thank God there are educated NS who know all about Chiari, you just have to search and find them.  Good luck to you!
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Avatar universal
I understand your struggle, your self-doubt. Believe me, i do. The neurologist I saw wasn't even going to tell me about the "borderline" chiari malformation on my MRI. He told me that my MRI results were " completely normal." I kid you not. I had ordered a copy of the report and had 2 weeks to research Chiari before my appt. The neuro said I just had cluster headaches or migraines. Not!

Please understand that there are so many misinformed doctors out there. They really have no clue what they're talking about when it comes to chiari. These doctors might be great for migraines, multiple sclerosis treatment, or other neurological conditions, but they're just not up-to-date on chiari, and often don't seem to want to be.

My mom is in the medical field. She has lots of practice reading X-rays and MRIs.  I showed her my MRIs when she was here a few weeks ago. She was seething mad! Yes, you can see, as clear as day, from multiple scans, that my hindbrain is very crowded, that there is no room for csf flow. My csf line disappears. She was aghast that a neurologist or radiologist would miss it, could miss it. They simply weren't looking for it. They were looking for something else.

It stinks that these doctors don't know. It stinks that we have to keep fighting to get help. It's not fair.

Please don't doubt yourself. Instead, pass off that dr as an incompetent moron, as I did mine, and find yourself a dr who isn't incompetent. It could be a battle. Insurance companies sure don't like sending us out of network, let alone out of state!  You just need to keep fighting. It's not going to miraculously get better. Chances are things will get worse, so don't delay, and don't give up.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
The problem  isn't the line, it is the info he has and the lack of experience some feel the herniation must be at a certain level or it is not chiari..which we all know is wrong....so it doesn't matter that the herniation is below his line...lol....

There r a few that will review films free of charge...some charge a minimal fee....call the drs u would be interested in, and ask .

BTDT with going several hours, waiting longer and getting nothing for too much money....it gets crazy...but we also know there is something wrong...keep pushing u will find the right dr that can help u.

I believe Dr Hefez in WI does free reviews...not sure about ne others...except I think Dr Oro charges something like $40.00.

Keep us posted
"selma"
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Avatar universal
I know it doesn't matter, he didn't know that but what was "funny", well funny NOW is he had this line and there's stuff below it and he's saying there's not..lol.

I'm taht person who HAS to laugh when I'm upset and I said to my dad "did that just happen?!"  meanwhile I'm bleeding from pin pricks all over various parts of my body.

That was another question I wanted to ask.  Do any of the specialists look at films free of charge if you e mail them???

I'm just not happy about wasting anymore of my time right now.  I'd HATE to travel just to be told I'm fine.  If they can help I will travel but other then that I can't.

If so can anybody direct me to which one?

I was never checked via CINE MRI.  He made it fairly clear that he's done with me.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi...well first of all...where ur tonsils r does not dictate if u have chiari or not....chiari is the malformation of ur  skull...a problem due to herniated tonsils blocking CSF is what the drs need to look at...and it  does not matter if they r 3mm or 13 mm......


U deff had the wrong dr...this was not a true chiari specialist.

Were u checked via a CINE MRI for a blockage?

"selma"
Helpful - 0
Avatar universal
I don't know he's wrong.  I don't know what I know anymore.  I've been this way 11 years.  I have TWO special needs kids and it's becoming so HARD to take care of them.  I'm just at that point where I'm about to just give up.  Learn to deal with it.

The most contact he had with me was standing a few inches from my face.  He told me to open my mouth and "pop".  My jaw ALWAYS does that.  He said that combined with my facial/ear/neck pain he thinks I have a severe case of TMJ and that's when I got shoved off onto the Jefferson Headache Clinic.  Who I guess I will call tomorrow as I'm quickly running out of options.

I've learned that TMJ and chiari can mimic each other fairly the same just from a bit of google.

I just don't know what to do from here.  Do I keep going to this headache clniic?  Anybody ever been there?  Do I just go back to the NL which he also told me to do.  Try another medication.  It'll be my 100th for real and I"m really sick of pills right now.

I'm just very lost right now.  And I still have the same headache I've had weeks ago. :/

I've been not diagnosed with a lot of things but I have to say this is the first time I've EVER been UNdiagnosed!


Helpful - 0
Avatar universal
Hang in there! You have to be determined! You know that that Dr is wrong! You need to get a second opinion! I think most of us have been where you are at and getting help is a struggle! I have had 3 NS tell me there was nothing wrong with me! What is it with these guys? They are suppose to be so brilliant!
Sandy
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