Newly diagnosed and teriified!!!

[nootah]

Only found out last Wednesday that I have Chiari 1 Malformation.  I have been unwell for periods of time over the last few years with "vertigo", "fatigue" and upper limb weakness.... I have been tested for everything under the sun and even had carpal tunnel decompression to try to improve the problems with my hands,

I have been dizzy, nauseous and had a pounding headache for the last 3-4 weeks and had an MRI which has shown this condition.  I am a health professional and have worked in neurology for years and never heard of it...

To be frank I am freaked out..... see a neurologist on Wednesday evening for initial consultation and hopefully treatment plan....  Don't know what to expect anyone got any advice?

Nootah

[selmaS]

  No worries....I hope we do hear from, u again, it is helpful to have a place to go to just vent at times and know others totally understand what u r saying.

Good Luck Wednesday

[nootah]

thank you Selma,
I think I am just afraid that I am going to feel this unwell for the rest of my life... I have a busy career, family and love sports and currently I'm afraid to do anything.
I will see the neurologist on Wednesday and I think I would prefer to see a Chiari specialist.  
Will print the list off and take with.
No doubt you will hear from me again
thanks

[selmaS]

  Hi and welcome to the Chiari forum.

Once u have a Chiari DX, u will want to see several Chiari specialists to find the right Dr for u...educate urself on Chiari so u will know which is the right Dr and treatment plan for u.

There are many Drs that will offer to treat, and many that will deny Chiari is an issue....so be prepared for a roller coaster type ride.

We do have a list for the Ann Conroy Trust for Drs that treat Chiari...see the list in our Health Pages.   http://www.medhelp.org/health_pages/list?cid=186

There is more testing u will want to have to know how ur Chiari is affecting ur overall health....and related conditions u will want ruled out.

A CINE MRI to see if u have a CSF obstruction....a MRI of the cervical, thoracic and lumbar spine to rule out Syringomyelia and disk issues...tethered cord, ICP, POTS, sleep apnea, ehlers-danlos.

All vitamin and mineral levels should be checked as well, and know that those with Chiari are prone to connective tissue and  auto immune disorders so thyroid should be checked too.....

Just know u r not alone, we r here to help support and guide u if we can.