Herniation and symptoms

[Delilahtb]

Hello! I posted a few weeks ago, while I was at a loss after my dx. Since then I've changed PCP and have had a serious talk with my neuro regarding better communication. I have two new medications I am on now. Neurotin 300mg twice a day and 12.5 promethazine salts four times a day for the severe nausea I face everyday. I found out that my herniation is only 5.7 mm. From what I see online, I'm not sure that makes me a candidate for the surgery. My neuro recommended we see the Chiari center in Aroura WI this summer while we're visiting family in Chicago. I guess what I'm wondering, is I am extremely symptomatic, but I do not have a syrinx and my herniation doesn't seem too bad, in my uneducated opinion so, general opinion, am I candidate? I'm just so worried that I won't be and things will keep going down this slippery slope. In the past 18 months my quality of life has drastically changed. I can't imagine what 18 months from now looks like. :/

Thank you!

[ChiariWolf]

The length of the herniation should not be the determining factor. If your CSF flow is interrupted this is where many of the symptoms arise from.

To illustrate - You go to Sonic and get a scrumptious thick milk shake. As you begin sucking up the shake a chunk of pie dough gets stuck in the end of the straw. How much milkshake can you suck up the straw without removing the obstruction? None, right? And the harder you try to pull that fluid through the straw the more your head hurts. Now take that same straw and try drinking a nice cool glass of water with it. Make sense? The obstruction is your herniation it doesn't matter if that obstruction is 1 mm. Rather it matters if it is obstructing the CSF flow.

As some of us have found not all doctors understand this just yet. Some still want to put a rubber stamp on us but remember we are not all uniform cannon balls. Some will fit the preset mold and some will not we are all different. So don't let someone else dictate how you feel. Your body will tell you how you feel and that will tell you if the surgery is a go. If a good Chiari Dr is telling you so, and your body agrees then it's time.

I do hope that helps a little.

[lasel22]

I would definitely consult a chiari specialist especially if you are symptomatic enough that your quality of life is suffering.  You might as well go when you are nearby and at least meet the doctor and get the appropriate tests done.

I was very symptomatic and my herniation was only thought to be 3-4 mms. Once I got to a specialist it was noted to be 8 mms as it continued to lengthen around the sides.  I did not have a syrinx either.  The specialist I saw also was the first to note I do have mild to moderate craniocervical instability and tethered cord.  No other NS that I saw beforehand was knowledgeable enough about chiari and it's related conditions to realize this.  You may have some related conditions and a specialist would be able to identify them.

Surgery was the best decision for me. My quality of life has drastically improved.   The choice was mine to have surgery, my NS did not stress that I needed to have surgery immediately. But he agreed to perform the surgery because my quality of life was so poor.

So, I do think it's worth a visit to a specialist you are suffering.