New chiari diagnosis

[Kerrids]

Hi all, looking to share my experience so far.

Ten years ago I began to experience pressure in my head after laughing or sneezing. I was 18 at the time.  Pcp ordered an MRI and report said all was normal. I was told I was just stressed (just started college). Well 7.5 years and 2 college degrees later they're still happening. I told a new doctor about it and was told to just take some Advil. This was last year. This year the symptoms have been progressing.  Now even just turning my neck can cause the pressure/pain. Yawning, coughing, stretching, and even rolling over in bed causes intense pain. When it's bad enough, I lose my hearing until the pain and pressure subsides. I'm tired all of the time, and within the past week my left hand has been numb and tingly intermittently. A new pcp this year referred me to a neurologist, who ordered an MRI. The report was posted to my patient portal today. I have a 25mm herniation of the cerebellar tonsils with a crowded foremen magnum, which would explain everything. I have a follow up with my neurologist in 4 weeks, but I was hoping she would call me in sooner considering the findings.

Today I requested my MRI images from ten years ago and they are eerily similar to the ones from last week. I'm pretty upset that I've been living with this pain for ten years and have been told I'm just stressed or need to take an nsaid. I cannot laugh without being in pain.

I've been looking into neurosurgeons with experience with chiari malformations, and I did find one close to me.
Should I wait to see the neurologist, or should I just schedule something with the surgeon asap?

[Kerrids]

Thanks for the info! I called the neurologist again today and they scheduled me to see one of their surgeons on Monday. He has really good reviews and works just one town over. While I was looking him up, I found an article in the local paper about him performing a chiari decompression. I'm not sure where to look to see if it's a specialty of his. Of course I'll go with a list of questions. What are other questions I should be asking?
Thank you for your help!

[selmaS]

Hi when you google the Drs name there should be a list of specialties...if Chiari isn't number one on the list he is not a true Chiari specialist......Also you will want to know if this Dr will check you for ALL related conditions ...Syringomyelia, Ehlers-Danlos Syndrome, retroflexedodontoid, Basilar invagnation, sleep apnea, POTS, ICP , CCI, ........
What testing will he do....your MRI should be less then 6 months old or he will or should want a new one....that is the brain MRI you also need a cervical spine, thoracic and lumbar spine MRI...rule out disk issues and tethered cord......then a CINE MRI to rule out a CSF obstruction.

Ask him/her what would cause him/her to recommend surgery ...hint it should not be the length of the cerebral tonsils.......

[lasel22]

I second selma's suggestion to see a true chiari specialist. I went to many neurosurgeons who claimed to be chiari specialist on their profile but really weren't.  They passed me over since my herniation was smaller than yours, although I was mostly bedridden with symptoms. I'm so glad that they blew me off and I ended up with a very experienced chiari NS who also knows about related conditions. Since your herniation is so large a NS will most likely offer surgery if your symptoms are bad. If he isn't experienced in chiari and related conditions the surgery might not have the most optimal outcome.

[selmaS]

Hi and welcome to the Chiari forum.

I would suggest you slow down and wait for a report from your NL...many Drs even NL's and NS's do not believe that Chiari causes many of the symptoms we suffer with....and you also want to make sure you have a true Chiari specialist...one that will rule out ALL related conditions before suggesting surgery and will give you other reasons other then the length of herniation as reasons for surgery and will list what benefits you may have post op.If the Dr claims you will be fixed or healed after surgery run as fast as you can....there are many willing to do surgery but do not really understand how we are affected and that surgery is not a cure....it is only a means to slow progression and help restore CSF flow if it is obstructed......

Do as much research as you can....and move forward slowly.