Already Discouraged

[wingnutt]

CT shows 5mm Chiari Malformation. The usual symptoms of Chiari. Get the feeling docs are going to fluff it off as no big deal! Had an MRI with and without contrast. Got a call from my pcp and his demeanor was so "no big deal" your MRI shows the same thing we already know. What should I do from here? Tired of getting fluffed off by docs!!! Any suggestions?

[selmaS]

  Yes, it is typical for Chiari symptoms to cycle...so we may think finally it is gone...when in fact it may just be a short reprieve.....

Stress as Mel mentions can make things worse...certain physical activities can trigger symptoms as well.....

[Rylanesmom]

and stress does make symptoms worse

[Rylanesmom]

Michele Dr Oro is amazing:)  Good luck!  wingnutt I answered the last question on another post.  I hope you get some answers on Friday.  It is stressful when you get diagnosed and are trying to get answers.

[wingnutt]

Is it part of the Chiari to have symptoms come and go?

[wingnutt]

Good luck Michelle!

[MicheleTxRN]

I understand the discouragement. I got the same from a NL and from a NS that was suggested on "the list'. Just keep pushing. I'm seeing Dr. Oro this week..and hope..and pray the "royal Chiari runaround" will cease. Best wishes to you!

[MicheleTxRN]

I understand the discouragement. I got the same from a NL and from a NS that was suggested on "the list'. Just keep pushing. I'm seeing Dr. Oro this week..and hope..and pray the "royal Chiari runaround" will cease. Best wishes to you!

[zygy2]

Sorry about the runaround you are getting!  It is a horrid process when you can't get anyone to listen.  My PCP listened way more than the NL she sent me to, just depends on who you get for a Dr.   It took me a lot of work to get from NL (who just wanted to prescribe meds) to a NS that had experience an would listen.  Just have to keep fighting even when you are discouraged.. it can be a very long process to find the right person!  -Zygy

[wingnutt]

Thank You!  Very good advice!!

[Rylanesmom]

What Selma said and also be ready to keep fighting for yourself and keep searching!

I love my NS he is amazing!  My NL not so much and I have had chiari surgery and she agreed it needed treated yet now thinks my issues are not neurological and wouldn't even listen.  Many don't understand and we have to keep looking for someone that does.  My wonky vision is not neurological ... oh yeah it was fine prep op!  

[selmaS]

Hi and welcome to the Chiari forum.

AS u can tell Chiari is not always taken seriously or we r not....and we get bounced from Dr to Dr we have dubbed this the "Royal Chiari Runaround"

Having the Right Dr is key.....finding him is the trick.....we do have a list of Drs u can use to locate chiari specialists....many times once u have a dx of Chiari and r able to get testing for related issues/conditions u can send copies off to the specialist for review.

The list is not a referral...just a means to help u get started with ur research.

As I mentioned send copies off, so that means u have to request those copies each time u have testing done....if u haven't done so this far, call the facility that did the studies and request copies for a 2nd opinion...make copies...request copies of the report as well....going forward request copies of all test reports and CD's of MRI. CT's etc....so u have them.

Keep in mind u may have to travel to get to a Chiari specialist....and that u r not alone : )

[Viva001]

in crazy chiariland, my pcp was supportive, & the NL he referred me to was a jerk.

good luck!

[wingnutt]

I have an appointment on Friday with a neurologist

[Sexybare]

Do u have a nl? They may help u along further than your pcp.