NS appt. didn't go well at all!

Hello all! Well I went for my first appt. with a NS hoping and praying it would go well. I ended up leaving with a chiari headache, upset and crying and Mad. He said that my sx could not be caused by my herniation as it is only 3mm. He said that the chiari would not cause half the sx I have. He wants me to have a CINE MRI done to see if there is a blockage. He feels like something else is going on, but he couldn't tell me what. I get so sick and tired of hearing that my herniation is "too small" to cause sx.
I have decided that I am going to try and schedule an appt with a Chiari specialist in either Illinois or Ohio as those are the two states that are fairly close to me. Does anyone know of any Chiari specialists in either of those states that they have seen or know someone who has seen a specialist in that area?
Thanks for letting me vent.
God Bless!

[Jennyfoo]

I know exactly how you feel. I've been getting the run-around for over 6 months. I've had 2NS and a neurologist  say a 4 mm herniation can't possibly cause problems. I've tried to convince all 3 to do a CINE MRI and they said its not necessary because it's obvious there's plenty of csf around my tonsils. Look at my MRI films. I put them up here. I have obvious crowding and no room for csf flow posterior to my cerebellum.

I have multiple problems with my back, highly suspect I have a syrinx in my thoracic, but the last NS said Chiari only causes syrinx in cervical. I know that's BS. Lol! How many here alone have a thoracic or lumbar syrinx?

I've kinda given up. I'm not sure if I'm just going through a better phase, since symptoms cycle, or if the muscle relaxer I was on was causing daily headaches in addition go Chiari HAs. I've been doing better the past week, since switching to another med.

I saw my rheumatologist today and he said, "Have we discussed Fibromyalgia? I do think you have it too, unless your muscle tenderness is being caused by the Chiari Malformation." he'd just read a study last week about Chiari being misdiagnosed as fibro, the similar symptoms, etc.

It was nice to have 1 doctor who is actually trying to keep up to date in his field.

We're trying to move out of CA. If we do, we'll get on a PPO plan so i can go to TCI or WI Chiari center. We're thinking probably Maryland if my hubby can keep his job and telecommute. We'll be about 4 hours from TCI.

[taytaymae]

I just found out I had Chiari 1 with a 7mm herniation and have plenty of symptoms to go along with it.But my stupid NL said it could not cause ANY of my symptoms! BS...GGGRRRR.......idk whats wrong with these NL'S.

BEST OF LUCK!

[selmaS]

Hi...we have a list of drs to help u in ur search for a dr...it is not meant as a referral, but as a means to help jump start ur research.the list is compiled by the members here of the names of their drs....some r true chiari drs , while others r NS's that had successfully treated a member here.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

As for the size of the herniation...way too many drs r hung up on it when they should look to the CSF flow and overcrowding first, u have the offer to get one done...go for it....

The shape of the tonsils r also more of a concern then the size...again, I am not sure what is wrong with these drs and y they do not listen to the patient.

Hang in there : )

"selma"