Not Loving Being in Limbo

So here is what the last 2 months of doctors appointments and tests have revealed:

4 mm herniation

symptomatic (headaches and head pressure with focus on the left eye, dizziness, and signs of neuropathy in hands and feet), but MRI scans showing some room

Cine MRI not showing any blockages

Cervical MRI shows persistent central canal (I think this is also referred to as a hydromyelia) instead of a syringomyelia

opthoneurologist examination shows no optic nerve or muscle issues with the left eye or evidence of intracranial pressure that is often present in CM patients

According to my NS, I am a candidate for the surgery based on the symptoms, CM diagnosis and hydromyelia, but he isn't yet recommending surgery since I do not have the key indicators that favor surgery.

So I am now in what I refer to as Chiari limbo or the "check the box" method of treatment - trying medications and ruling out other sources of the symptoms.

Is this where any of you are or have been? If so, any advice or helpful experience? It is extremely frustrating, and although I do agree with my NS' approach, I hate not having any real plan of action or relief.

Has anyone had surgery with this type of background? Any medications that you have had success with for headaches and/or dizziness? I tried Maxalt and Relpax, but they both made my headaches significantly worse.

What are the indicators that favor surgery? Are you talking about surgical outcome predictors? I’m very new but I have conducted a ton of research. That said, there is so much to know! I haven’t heard of the indicators that favor surgery. Would you mind shedding some light on this?

Being in this limbo is my greatest worry since diagnosis. Have you met with more than one doctor?

I am by no means an expert, but I am fortunate enough to live in Houston with access to a neurosurgeon with a lot of experience with CM. My neurosurgeon would definitely recommend surgery if you have a syrinx, a CINE MRI showing an obstruction, or are severely symptomatic. I also saw an opthoneurologist since my headaches seem to come with pain or pressure behind my left eye, and she said that she would have recommended surgery if my optic nerve had crescents around it (one of the signs of intracranial pressure that can come with CM).

My symptoms right now are manageable a majority of the time, so I feel that the potential benefit is not yet outweighted by the risk of surgery based on my current condition and the information we have. My NS agrees that we want to make sure surgery is the last go-to option. However, he warned me that my condition could worsen and it may be a question of me getting to the point where nothing else works and I can't handle the symptoms any more, at which point I will do the surgery. It's a depressing thought, but I agree with the approach.

I have met with a neurosurgeon, neurologist, and opthaneurologist, and they all seem to be pretty consistent in terms of the circumstances whereby they would recommend surgery. I trust my neurosurgeon and it was just a stroke of luck that I knew him before my diagnosis and that he was listed on this site as a recommended NS.



Patchoulimama said:

What are the indicators that favor surgery? Are you talking about surgical outcome predictors? I'm very new but I have conducted a ton of research. That said, there is so much to know! I haven't heard of the indicators that favor surgery. Would you mind shedding some light on this?

Being in this limbo is my greatest worry since diagnosis. Have you met with more than one doctor?

How did your friend feel after the surgery? Was it successful? I agree with what you are saying. I'm probably heading for surgery one day, but I'll probably be trying everything under the sun between now and then. The only plus is that I might get some botox out of it to see if it can help with my headaches lol!

Emmaline said:

My friend had surgery based on symptoms only. Her herniation was only 3mm. And she didn't have a Cine MRI. It really depends on the NS. You are the patient and if your symptoms aren't being managed...they is only one alternative. The herniation can cause damage on it's own.

Thanks, Kat! You too!

Kat said:

I don't have any advice, but I can relate. Trying meds, doctor runarounds, testing, the not knowing..it all sucks. I just posted a discussion about my runaround today. Hang in there Desiree.