12mm herniation

[SaraRich]

I have chiari and IIH. I was diagnosed in 2019. I had symptoms for 5 years years before diagnosis. In 2019 I was out on diamox. Which has worked. I had an MRI and it appears my herniation has gotten worse to 12mm. Up until a month ago I was symptom free. I have recently started having some dizziness and blurry vision on and off. They say my only option is surgery. My question is will that really help? Is there anything else to try before surgery? I am 29 and have an 8 year old. I have seen the stories of people constantly in and out of surgery. I don't want that nor do I want my son's memories to be of me having surgeries and going through recoveries.

[SaraRich]

I also have 2 conflicting MRIs. One says I have no car with a 12mm herniation. The other says I have normal csf flow with mild low lying cerebral tonsils. The 1st MRI the doc says I need surgery ASAP. The other MRI the doctor says it doesn't need further treatment at this time. So this is another reason I am so lost.

[selmaS]

Hi and welcome to the Chiari forum.

Unfortunately there are many Drs out there that are not familiar enough with Chiari and ALL the related conditions they should just send you to someone that specializes in Chiari but I feel egos get in the way.
First , slow down....the length of herniation is not a reason for surgery as the tonsils can be long, but they can be thin....they would not obstruct CSF flow...but , a smaller/shorter herniation could be wider and cork up the flow....so, you need to find out if your CSF flow is being affected....surgery is done to restore CSF flow and slow progression. If your flow is fine, then surgery will not help you. Do you have a shunt for your IIH?

May I ask, have you seen a Chiari specialist ? In addition to Chiari and IIH do you have any other related conditions?

[SaraRich]

I had 2 mris back to back. One says my csf flow is fine and the other says I have none. I have not seen a chiari specialties. I am being referred to a general Nero surgeon. I do not have a shunt for the IIH. They put me on diamox to get the pressure down. And it seems to have worked. I am just so overwhelmed with all of this. After my diagnosis and being put on medication I was doing great for almost 3 years. And I still feel pretty good most days. Just some dizziness occasionally.

[selmaS]

Hi and keep in mind stress can cause these symptoms to flare...
A general neurosurgeon is not a choice I would make....they may offer surgery even though they are not well informed  on Chiari and related conditions....which could lead to additional surgeries to correct what they did...
You must have some CSF flow, otherwise you would not be able to do a thing, including breathing....when CSF flow is disrupted the signals to the brain for all autonomic function ceases....this disruption can cause drop attacks...you fall down since the signals do not reach your brain.....the disruption only lasts a few seconds and it is possible to be aware you are falling, but can't react for a short time....if the flow is not returned, you wouldn't be aware of falling or anything else, since your brain needs the signals to flow in the CSF to your brain...this keeps us alive.

Do you know if you have a syrinx, or EDS, tethered cord, POTS? Any related condition besides IIH?

[SaraRich]

No I have nothing else other than the iih and chiari. I have been more stressed lately, had some family issues going on. I am also a smoking but I have cut back a lot and I'm going to be quiting. Which I'm sure that doesn't help either. But aside from the symptoms I listed I have been doing wonderful. Compared to where I was. I had headaches almost every day, would get the headache when I would cough or laugh, I also had a lot of visual issues. But once I got a diagnosis and went on medication all of that disappeared. Is it possible I need to try a different medication or a different dosage?

[selmaS]

I am happy for your sake that you do not have any of the other conditions as well.....and that you are going to quit smoking, it will be helpful for your overall health.
And your medication question is one I can not answer, as I do not have IIH along with my Chiari, so I have no experience with DIAMOX and how it should work. But , I would talk with your Drs to see if they feel there is something else that might benefit you.

[SaraRich]

Thank you for all of your help. I really appreciate your knowledge and you taking the time to answer my question. It's good to know that there are people out there that know what we are going through.

[selmaS]

You are very welcome Sara,  I know others that did benefit from DIAMOX....but we are all different, even with the same condition as we can have other related conditions altering the symptoms and how it affects us....so even though we share a diagnosis, we will have different journeys....
If there is anything else I can help with, don't hesitate to ask....
Know you are not alone.