Neurosurgeons with Malformed Brains!

[mama2twobabies]

So, today was my first NS appointment and I finally understand all of your frustrations!  I am SO freaking frustrated right now!  After getting there 45 minutes early, even though they only asked me to arrive 30 minutes early, I was finally called back 2 hours after my appointment time.  Which was bad enough considering I was dying in the waiting room in the horrible chairs and bright lights.  But whatever.  I understand brain surgeons get called to hospitals to deal with brain surgery patients.  I can deal.  That wasn't the worst part.  I get into the room finally and the first nurst comes in and checks my temp and blood pressure.  Normal stuff.  Then a second nurse comes in--the NS's nurse.  She's ok at first.  She asks me when did I get my Chiari diagnosis.  Well, I never really got an "official" Chiari diagnosis from my doctor.  I found out from reading my own MRI report and scheduling my own NS appointment, but that's another story.  So anyway, she asked my symptoms, etc.  and then I tried to ask her some questions, but she seemed bothered by my questions and just told me to ask the NS when he came in.  Ok, whatever.  I guess I was supposed to just sit there and look sick and miserable.  Then enter the NS another half an hour later.  The real fun began!  This doctor began by completely talking down to me like I was an idiot.  He also told me that it's NOT a Chiari malformation UNLESS there is a blockage of spinal fluid.  Have any of you ever heard that?  He said that my MRI said there was a Chiari, but he can't tell me how much of a decention because he couldn't pull up my films even though there were directions and I pulled them up myself on my computer at home.  He's supposed to operate on brains, but can't operate a computer!  He didn't answer my questions either really.  He did tell me that your tonsils couldn't and wouldn't drop any further than they already were.  So if they were a 5mm, they would never be any more than 5mm.  I have heard otherwise.  He told me if I didn't have the surgery that I wouldn't need to have any follow up MRIs to check for the tonsils dropping any further ever again.  He also told me if I had the surgery I'd never have problems ever again.  He told me it wasn't hereditary.  He ordered a cine MRI in two weeks and an MRI of my neck, but not my entire spine for a syrnix.  He didn't order any of the other tests you guys ever talk about as far as the eyes or the thing with the water in my ears or anything.  He didn't know of any Chiari specialists and told me I didn't need one anyway because I didn't know if I had a Chiari until my cine and MRI of my neck came back because it's not a Chiari unless there is a blockage of spinal fluid.  So, any opinions guys??  I don't think he heard anything I said the whole time I was there!  He spoke so fast.  I spent three hours puking my guts up waiting on this guy only to be ordered an MRI and spoked to like I was a moron.  Please, please someone tell me of a Chiari specialist or a super wonderful neurologist in the Atlanta area!  I'm dying in pain here and no one will listen to me!  I'm pretty much bed ridden on most days because I hit the floor when I try to get up.  I don't know how much longer I can do this.  I tried to go to the doctor for help today and he wouldn't listen to me!  This is killing me!  I don't know where to turn!  How do you guys live with this for years and not have doctors who are supposed to help you not even listen to you or want to help you?  This is the most terrible feeling EVER!!!

[BobDiode]

After two years of having about 40 appointments with every kind of doctors and having just about every kind of tests I found out about Chiari on Google by matching my MRI Images which led me here.
By the help of the Chiarians here the best suggestions were to ask Dr. Rosner to review your MRI films. After he did and only stated " Typical Chiari 1 Malformation, I hope this Helps"
set my PCP Doctor in motion to get the first suggested test of forum members here once you know you have Chiari. This is the CINE MRI CSF flow study of the brain. and complete neck and back spine. Since my PCP wanted me to get my neurosurgeons report to get the tests done I had to try to convince my neurosurgeon that I had a Chiari DX from one of the doctors who wrote the books on it and  I value the opinion that most Chiari Expert doctors will order a Cine MRI to check for CSF abnormalities,   My Nero then agreed to put in the report a neck CINE MRI and if I needed my back done afterwords to take a step at a time. While my PCP doctor was trying to get me the referral to get the CINE MRI at the only place in that state that could do it, The medical Center told my PCP that the BRAIN needs to be done for Chiari Malformation. So now pcp needs the Nero report to say THE BRAIN CINE MRI on it to get the proper referral and asked me to call the NERO Dr to fill him in. I told my PCP I think it would be best if he should suggest that to my Nero because It doesn't seem right for the patient to be telling the Nero Dr which tests to be ordered for a Chiari Malformation CINE MRI Study..  The PCPs Nurse finally got it straighted out and the appointment was made for the right MRI !  Now I am still waiting for Air Travel  and Cab arrangements to be approved by my health ins co. for next weeks appointment. After flying and seeing how it effects my head with the attitude pressure changes And test results I will now have new options of seeking professional Chiari Doctors  in the LONG quest for treatment.of a condition that has also ruined my life.  
Thanks to all these Charains help and detection we DO have hope for a better life ahead.
It's vary important to get your blood tests , to keep up on nutrition and the right vitamins to boost your immune system in the mean time.
A shot of homemade Noni Juice every other day at least makes me think things will get better ! LOL
Good Luck on your QUEST !  and keep the faith going.

[mama2twobabies]

I had a terrible day today! I rescheduled my appointment with my regular neuro for this coming Tuesday. I'm hoping to try to get some faster answers & some more tests--something! Maybe it's not all Chiari. ****, maybe it's something completely different altogether. I just know I need answers & help faster than it's coming! I can't stand falling to the floor from pain & dizziness that literally knocks me off of my feet & barely being ably to swallow my food because of the terrible pressing in my throat & the fact that I can't even laugh anymore & every time I sneeze I wish a little my head would really explode so I never have to feel pain like that ever again! Right now I'm enduring another painful, sleepless night that feels like stiletto wearing bugs are marching on my brain with anvils strapped to their tails slapping me in my neck. That's the only way I've found to describe it! I'm losing my mind--figuratively & quite literally. Hopefully Tuesday when I'm sure I'll sob unconteollably in my neuro's office, he will hear me, or at least order every test he can to prove I'm insane & my next stop should be a padded cell where at least ramming my head into the wall will not be quite as painful!!!

[ThePeachy1]

you can do this we can make this happen don't give up, we can't give up. I had a funky appointment today but we will win this. we are in it together.

[mama2twobabies]

I appreciate all of your help guys.  Hopefully I'll get to the bottom of this.  If not, I guess I'll just live in pain until it gets worse and someone will have to listen to me or until I qualify for the surgery.  That's the only way Dr. Barrow wants to deal with me, if he can cut into my head.  I understand that, he's a surgeon, that's what he does.  He could have at least made recommendations for a neurologist who is more specialized in Chiari than my regular Neurologist.  It's just a crazy roller coaster ride of doctors who seem to have their own agendas that don't include adequate patient care or concern!  It stinks for people like us who have genuine problems!  So sad :(

[ThePeachy1]

Yeah your appointment sounded pretty much just like my appointment with my NS on June 5.  except mine kept telling me, wow, for someone with all these problems you sure look good, and avoiding all my questions, and then talking with my husband about their "simliar military careers".  He told me chiari can't get worse. and contradicted everything published. He's like 70 and he's done 20 in his life. NO big deal woman, lets just whack ya open right her honey. LOL. it is frustrating, we just have to find chiari specialist. thats the ticket, it is clearly the only way.

[youngwife]

Sorry. I didn't realize that his email addie was not allowed.

His phone is [phone].  If you need more info, I will be happy to try help.

[youngwife]

There always is Dr. Michael Rosner in North Carolina if you are interested.  I would find his website (which should be fairly easy to google), and send him a comment/message on there.  He will eventually return  your email.  Or you could just email him directly at ***@**** .

If you have any other questions, please let me know.

Blessings,

Rebecca

[Shane99]

Double check with your insurance - they must make allowances for rare conditions. Threaten to sue. You're going to have to be your own advocate.

Yes. Dr Carl Hampf is a wonderful surgeon. I recommend him highly. I've recommened him to others, and all that meet with him like him. I just had a lunch support group meeting with two others from this board that would be glad to recommened him also - sissy and lovemygirls.

[selmaS]

That is ok...I actually e-mailed Dr B at TCI and he suggested it for me and told me what tests to get done.....I was just as frustrated and I drove to Philly for one of the NS and he was no better than the one locally....

Angel flights is listed in the Health Pages under links.And Variety House is a place that TCI tells patients about.SO if u need that info I can PM it to u.

"selma"

[mama2twobabies]

Just checked, my insurance doesn't cover TN.  I'll check into the organizations you checked.  TYVM.  It's SO appreciated!  I have all of my disks still.  I made sure of that!  I'll check into getting the other tests ordered by my PCP.  He's amazing and very helpful.  To be honest, I didn't even think about it.  This oversized brain of mine isn't working lately LOL.  Thank you so much for all of your help!

[selmaS]

Here is Shane's dr's info......



Dr. Carl Hampf, Baptist Hospital Nashville, Tennessee
800-668-9410
[phone]  

[selmaS]

There are organizations like angle flights and the Variety House who charged $25 a night for my DH to stay....Hospital security pick up and drop off for free.....

SO if ur insurance is covered there ....there r ways to get there....if u want to go to TN....Shane and several others have been very happy there too,

Will ur PCP order the other tests that this dr did not?...if so...get the ones this guy ordered, but ask for copies of the disk and have the report sent to ur home...tell them u r getting a second opinion out of state...

This will make it easier no matter where u decide to go.

I have to look at our thread of chiari specialists..to get the spelling.....

Again, I am so sorry u had this dissapointment

"selma"

[mama2twobabies]

I saw Dr. Barrow at Emory, who I had heard good things about and who sees Chiari patients.  I even read a review (not on this forum) from someone with Chiari I that said he pretty much gave her her life back.  I am not really financially prepared to travel too far.  I do have decent health insurance with my husband's employer and I suppose after my cine and the MRI of my cervical spine (neck) come back on the 25th come back, I will look further into traveling.  I think Shane said his doc is in Tennessee and I suppose that is more practical than New York.  I did look tonight and one of the docs at the the Chiari Institute does take my insurance, but all of the other expenses are a bit much.  I have two kids under the age of five and I stay at home right now.  Like I said, I'm going to see what the results of my cine and neck MRI are and look for a new neurologist since he didn't even tell me I had Chiari to begin with.  I guess I should get the name of the doctor that is in Tennessee to see if they accept my insurance.  Do you know who it is?  Thanks for your help BTW.

[Dawn1214]

Try Daniel Barrow at Emory. Do you know where that is. He is chief of neurosurgery and one of his specialties is Chiari. Please look him up. Call the hospital and ask for the neuro dept.

Go online to Emory and check out the other dr.s there to see if there are any others that specialize in it.

Let me know what you find out

[selmaS]

Hi...I am so sorry u had to go thru that....most of us including myself had the same thing happen.

What ur misguided NS was trying to say is a CFS blockage is when most of chiari symptoms show up and this is what causes problems.

Chiari malformation is the small area of the posterior fossa...and becuase it is too small it is malformed.....this can cause the cerebellum to be forced out the bottom....a small thick herniation which blocks CSF flow is more of a problem then a herniation were the tonsils are longer say 6 or 7 mm but are thin and do not block CSF would not be moved so quickly to surgery as the smaller herniation.

U may not have a chiari specialist in ur area.....u may need to travel...may I ask who u saw??

I went to 2 diff NS and had similar results....relax.....it is a NS that has not kept up on chiari sincce med school.

How far can u travel....???

"selma"

[beachlover3897]

I feel your pain...(in a sense)  Fortunately for me, I do not experience the miserable headaches that I hear others experience...I have the vertigo and imbalance issues really bad.  I went to see an ENT and he is the one who ordered further auditory and vestibular tests for me.  Typically, with imbalance issues, people tend to look at the vestibular, or inner ear, to resolve the problem.  That's when the VNG test was done for me with the air in my ears because the doc thought is was vestibular, which in a sense it is, but the MRI showed a 9 mm herniation.  The NS I have seen is also an idiot and referred to my malformation as "borderline"...everything I have read, says the 2 or less is borderline and he doesn't think that any of my awful symptoms are related to Chiari.  He was very standoffish, to say the least.  My symptoms were disregarded and no further testing was ordered.  I have been trying to get more MRI's, like you, to see if the cerebrospinal fluid is flowing properly and to see if there are any syrinxs in my spine!!!  It is a frustrating process but we WILL prevail.  You will be your own best advocate and you have the RIGHT to a second opinion.  I wish I was able to make a recommendation for a NS in the Atlanta area...others here will probably refer you to a thread of doctors they have used and feel confident with...There is a teaching hospital here in Virginia that I have contacted and they have a phenomenal neurosurgery department from what I hear.  I am waiting on an appointment and hopefully will be seen in the near future!!!  

[Dawn1214]

I am so sorry that your appointment, for lack of a better word, "sucked". I don't know of any specialists in or near Atlanta but hopefully someone else will.

The cine test is the first step and if that test comes back bad then the next step I suppose would be to look for a syrinx. I had the ENG (the ear and eye test) because my other tests came back good and they were searching for other reasons for my symptoms. It is a long process and I know you are frustrated. I can definitly sympathise with you.

You obviously didn't like this doctor at all so I think you are right to try to find another one. Do you have a university hospital near you? How about a hospital that has a well known Neuro department? I am going to do a bit of searching and if I find something for you I will post again.

In the meantime be patient as I am sure Selma or Shane will be on here to give you some advice and their opinions. They are more up on this than I am..

Dawn