Hi there...I just read your post. My heart broke for you! TOO MANY Chiari patients are blown off by doctors who have NO CLUE about the disorder AT ALL!
I'm hoping you decide to move forward and have the decompression surgery done! The sooner the better!!
SIZE DOESN'T MATTER when it comes to the symptoms that you experience, in my opinion! I've been in your shoes...left countless doctor's offices frustrated & in tears!
Unfortunately, there aren't many Neurologists that specialize in Chiari. Therefore they dismiss it! It's taken me 9 years, multiple states & multiple Neurologists, but I FINALLY found one who knows about Chiari & treats patients who have it! She has helped me more in the past 9 months than all of the others put together!
I've had the decompression surgery in 2012. Unfortunately it was not done correctly & left me in pretty rough shape. I just had revision surgery 6 weeks ago. I'm healing...it's been a long road, but I always stay optimistic!!
Don't be afraid to ask the surgeon any questions you may have!!
I wish you all the best!
Hi and welcome to the Chiari forum.
I also went to Uof P and got nowhere as the NS there told me it was "above him"...with no suggestions where to turn next.
So, what I can tell you is you need a true Chiari specialist...having the right Dr is key !
As to what is Chiari.....the herniation is not the determining factor if you have Chiari...Chiari is a malformation of the skull, the herniation is the result of that malformation. That said, many Drs even true Chiari specialists do not consider a patient in need of surgical intervention with a herniation of less then 5mm's BUT if you present with symptoms and other related conditions they would not turn you away.
You will also need to have a CINE MRI to see if you have a CSF obstruction...if not, there is not much a NS can do to help since the surgery is done to restore CSF flow.
It is possible to have related conditions that could be the root of the symptoms you are experiencing.Having a well informed and experienced Dr, they will look for and rule ALL of these out.
If you need help locating Drs to research let me know what areas you want to look at.
I would look into more forums. On surgeries, outcomes and successes. Surgery is so serious. Mine is almost at 9cm and never had surgery. Headaches are now uncommon for me. Twice about 10 & then 3 yrs ago two diff surgeons told me surgery will not solve issue. (Cervicala 3-6 are very damaged) I’m on a no acid diet, no pain killers, walk and work out regularly. Eat protein 4 times day, no sugar protein w coconut milk, mango in am, natural carbs, no sugars, some natural honey instead, cheat maybe 1x on wknd. I’ve beeb treated for sleep apnea and TMJ. TMJ was a large pain contributor (also interfered w my eye-site). I’ve leaned about proteins nerves, muscuskeletal, etc. Healthy colon makes a huge diff on headaches. Light dinners & staying hydrated makes a big diff. I rearely drink alcohol. If I do it’s wine fr Oregon or WA or draft beer. No preservatives, so bad for the brain.