Recently diagnosed, need advice :(

[gmtl34]

hey everyone,

Im a 24 year old male from Melbourne Australia, im honestly really confused and scared by what ive found out and been told the last few months and would love to be able to get some advice from people that have been through this.

I have had symptoms of chiari for the last few years, the main symptom being the intense headaches. I only noticed how bad these headaches were when i started a new job as a builder and had to continuously bend up and down, the headaches got so bad to the point i had to quit my job to avoid the pain. I get slight pains when laughing hard or sneezing/coughing etc but only momentarily.

I also experience constant ringing in my ears which can keep me awake at night, dizziness when standing up/ getting out of bed too quickly/ bending over, numbness in hands but all these symptoms feel managable most of the time.

I had an MRI after i left my job and saw a nuerosurgeon a few days ago, he advised i have type 1 chiari and put me on the waiting list to operate. Im really unsure if i should get the operation or not because i never had severe symptoms when working in my office job for years previous to starting my building job.  Thanks to this forum ive been able to learn alot about the condition and other peoples experience but really need some advice on the following:

- is it worth operating to get rid of the symptoms i do experience ( noting im returning to an office job where i never had headaches )
- can anyone reccomend a chiari specialist in Melbourne Australia because i have had great difficulty finding one and do not really trust the neurosurgeon i saw
-can severe damage be caused longterm if i choose to not operate
-has anyone else experienced symptoms of slurred speech, stutturing and mis pronunciation of words? Or general loss of concentration and or fatiuge?

If anyone can provide any help or advice or anything at all it would be greatly appreciated as my surgery will be within 3 months and i need to get all the information i can to ensure i dont make the wrong decision.

Thankyou kindly in advance

Jim.

[Krystinamarie]

I am 22 and I had decompression surgery for Chiari type 1 last May. Unfortunately my symptoms did not improve and I am going to be getting a second surgery for craniocervical instability.

Although I am not familiar with any doctors in Australia I cannot emphasize enough on how important it is find a Chiari specialist who you are comfortable with and who will be able to look at the big picture and recognize/diagnose any related conditions. I would definitely put off surgery until I at least had a second neurosurgeons  opinion. It could be the difference between a successful surgery or multiple surgeries/complications.

Have you tried medications/therapies? I've done acupuncture and I have prescriptions to keep symptoms manageable. I've also read that yoga and physical therapy can help if it doesn't worsen your symptoms.

Good luck with everything!

[selmaS]

  Hi and welcome to the Chiari forum,

First you will need more testing b4 you can decide if you want surgery.....A  full spine MRI to rue out disk issues and syringomyelia......and a CINE MRI to see if you have a CSF obstruction.....

Surgery is done to restore CSF flow....and correct any other  physical issues such as a retroflexed odontoid....kinked brain stem...etc....

A decompression may not be helpful if you do not have a CSF obstruction....if they plan on other surgery do ask what and why .....


We have a very short list of Drs for your  country....not sure if the Drs are close you...- http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-Australia/show/1314732

Make sure the Dr is well experienced with Chiari and plans to use oxygen for you post op....and they rule out ALL related conditions B4 surgery.....

Perm nerve damage can occur if you have a syrinx and it is left untreated too long....Chiari itself can cause issues as well depending on how it is affecting you....we all have different symptoms and effects from this condition...so you will need more testing to know what benefits surgery will offer you.

Yes, yes, and yes to your speech questions.brain fog or lack of concentration yes and YES to fatigue....unrefreshed sleep is one of the top issues for most of us and one reason a sleep study should be done to rule out sleep apnea....