insignificant? even with symptoms?!

[fbrew6]

Hello I have suffered from neck pain headaches and more recently severe dizziness and now a headache for two and a half weeks strait despite my doctors efforts fire many medications and injections.my mri showed
"low lying cerebellar tonsils terminating at the foramin magnum." My dr consulted with a neurosurgeon who said this was insignificant.. I'm like thinking all the symptoms seem to make sense now! I always chalked my neck pain up to a car accident I had ten years ago! Does this seem insignificant to you guys? My ent said it's likely from a surgeon stand point this is not significant but a neurologist may see it differently which I have a first appt next Monday I'm hoping for some relief..doo far norco and flexeril are the only needs that provide relief although I think they mostly just out me to sleep I still wake up with a headache

[selmaS]

  Yes, there is a link btwn Hashi's and cancer as with Hashi's nodules grown on the thyroid which can develop into cancer so they need to watch the growth of the nodules....

And there is a link btwn Chiari and Hashi's in that those with Chiari are prone to develop auto immune and connective tissue disorders and should make sure they do not have this as well.....

My sister had thyroid cancer and had one side of her thyroid removed....I also feel she has EDS...but to date no Chiari...makes me wonder tho how it  seems to be in families like this as my dad's mom also had thyroid cancer.

[fbrew6]

Ok thanks... I have no thyroid because I've had thyroid cancer and I also had hashimotos before we removed the cancer and thyroid is there a link between thyroid cancer hashimotos and chiari?

[selmaS]

  OIC,....hmmm I know there is a Dr in Washington State....can remember if there is anyone listed for  Oregon.....

A CINE MRI to see if you have a CSF obstruction....MRI's of the cervical, thoracic and lumbar spine to rule out Syringomyelia (syrinx).

Rule out Ehlers-Danlos, sleep apnea, ICP, POTS, disk issues, auto immune  thyroid condition Hashimoto's...freeT3 and freeT4 TSH and TPO antibodies.Vitamine levels B12, D and minerals potassium and magnesium.

No low lying tonsils is not the same...the difference is low lying tonsils can result from a trauma, blow to the head etc...or a fast draw on a LP....but Chiari is a malformed skull which is too small to hold the cerebellum and it forces it out creating the herniation. The symptoms and treatment is the same tho.

[fbrew6]

No I'm in oregon I haven't met the neurologist yet but from the sounds of it he will likely dismiss it or not believe it's chiari hopefully he at least will try to get rid of the headache I've had for weeks..
Perhaps you can help me be prepared for my appt Monday what tests should he do next? If they are low lying tonsils does that indeed mean I have chiari?

[selmaS]

  Hi and welcome to the Chiari forum.

It is sad to say but far too many Drs feel Chiari is an insignificant finding....and I think most of us have had a Dr tell us it at some point in our journey with this condition.

Many will also look to the length of the cerebral tonsils that are herniated in order to describe the condition calling it mild etc....which really burns me as it sounds like you have no symptoms what so ever and that is far from wrong as is the other possible effects it can have on your overall health.

Find a true Chiari specialist and have more testing for all the related conditions .....we do have a list of Drs to be used only to help you with researching Drs as your starting point the list is not a referral nor an endorsement for those list on it...

Educate yourself on Chiari as that will help you determine when you have the right Dr for you.

U mentioned Kaiser, are you in CA?...We do have at least one Dr on our list that works with Kaiser..

[fbrew6]

Thanks I fear I'll be limited to doctors because I'm Kaiser in the north west. My reg md wants to try a thorazine injection because he feels this is migraine or tension headaches that medication frightens me plus I'm pretty pessimistic since nothing else has worked so far

[Elisaandbucky]

It is incredibly difficult to hear the word "insignificant" when your pain is quite real. Look further than one neurologist for a treatment opinion. There are some doctors who are very dismissive. But they aren't feeling your pain. Your car accident may have been the onset for your pain. My own symptoms began after a fall ice skating. Keep careful record of your symptoms, their duration, and any triggers that may bring them about.