Chiari Online Support Group

Follow up visit

I just got done with my second follow up with the neurologist following my diagnosis with Chiari I in May. My dr would not tell me how bad the herniation was with the CM. That the CM wasn’t causing my symptoms and she wasn’t going to waste her time holding my hand to talk about CM and the large cyst I have bc I was just having migraines. I am unsure what to do next. The dr gave me even more meds to treat the headaches since the other meds she had prescribed have not helped. The new meds are Effexor (to help with headaches and “my mood” as she condescendingly stated) and Replax, in addition to amitrypilin, reglan, maxult.

My list of symptoms:
Chronic severe headaches
Numbness and shooting pain In hands, arms, face
Dizziness and lightheaded
Blurred vision
Insomnia
Fatigue
Nausea and vomiting
Ears ringing
Pain base of skull
Hot flashes/chills
Brain fog
Temporary paralysis in arms and hands
Stiffness in neck
Pressure in head
Ears and head feel like underwater

The dr blew off all my symptoms and said they are not related to Chiari and are just related to migraines or are just in my head

Tiffany, in my experience NLs love a migraine cause they can write an RX for it. Does it matter the rx seems to never work for any of us??? It’s all very rich. You may or may not have migraines, but what we know for sure is that you have Chiari. Please research an NS that truly specializes in Chiari and you will be validated! I’m sorry you were treated that way- these people don’t realize how disappointing it is is to wait and wait for an appointment to get some help and then leave empty handed. Hold on, hang in there, keep moving forward.

Jenn

Hi Tiffany,

That happened to me! The neurosurgeon (Chiari spec) said that my symptoms were related to migraines.. lol I told him no... He refused to do the surgery because I have too many migraine related symptoms... that if I only complained about pressure and pain from straining and bending, swallowing problems, sleep apnea, nystagmus (eyes), and gait problems. To him every thing else did not matter.. So I am scheduled to see another doctor that Im willing to drives 2 hours away to see and I will only complain of the things they want to hear...

ANY doctor that says those things to me (personally) would be off my list and Id be moving onto others. You are your own advocate here. I searched for years for doctors and faced rejection and doctors telling me there was nothing wrong with me, so even saying that it was all in my head and I needed therapy!!! The ignorance of some professionals is really ridiculous!

Your symptoms are real! Check out the list posted on here and find one that is close to you!

Why wouldn't the doctor tell you what your herniation was?? That's just odd to me. And for her to say she "wasn't going to waste her time...." that's just flat out unprofessional.

Get to a real chiari dr. They are the most experienced that can help you with your circumstances!

You need another doctor. This sounds like exactly what happened to me when I started getting my symptoms ( I completed that list at 18which is abnormal to most doctors, I find that to be crap.) at 18 and no one considered it because most people don’t become symptomatic until 25(ridiculous). For a doctor to not give you your own health info (your herniation) is very odd I would request my health records and never see them again. I drive up to 3 hours for my current doctor, for a good doctor that knows chiari I would drive further if I had to.

Not sure if your still on this forum but you have perfectly described my 11 yo daughter’s life💔 the only thing missing is loss of vision