Anyone One Else Have a Chiari Malformation?

Hey everyone, long time no see.

I've been doing pretty good lately, except for the fact I was diagnosed with a Chiari Malformation last week after beginning to get weird symptoms back in September :/

Of course during my research on this condition I found out a common side effect is Tinnitus. Great.. Although I'm about 99% sure my T is from those unprotected gunshots a couple years ago, I cant help but fear that my T is going to get worse in the near future. Since Chiari is usually a birth defect, im beginning to think my fleeting Tinnitus I had pre Gunshots was due to this. It took me forever to get used to the level I'm at now and an increase would drive me insane. That would be in addition to the anxiety to my new symptoms.

I've started having minor neurological symptoms (we caught this condition early, well not early enough but early in the sense I'm not paralyzed for good or in irreversible debilitating pain) like slightly numb limbs, dizzy while walking, minor-severe pain in the back of the head. Lots of tests going forward the next few months to see if I need brain surgery to prevent further damage but other than that, well I'm out of luck. Need to get our health system to do more research on the brain because so far, they cant really do anything to fix things up there.

Anyways, just wanted to see if anyone else had any insight on Chiari and how it affects their T.

 

Hi @Tibberz
Did you get surgery?

I have a 3mm cerebellum herniation so am apparently borderline, but get most of the symptoms, many neurological issues and all the ones you describe above. No one cares unless it's 5mm. Saw a neurosurgeon who chalked it up to stress believe it or not.

Vibrations and jolts make it worse including my T. Since my neuro issues worsened I get spikes from cycling, jogging, driving on rough roads, or even cars that vibrate when the aircon is on. Previously I didn't get spikes at all.

Surgery I've heard isn't a cure or very pleasant sounding. I read George Clooney has it but claimed it was something else. Guess he didn't want it to sound like he's malformed haha.

 

My daughter who has become wheelchair bound due to chiari malformation and ehlers-danlos also has sharp tinnitus in her ear (s) as well. The only solution would be to have the surgery. Her herniation was also regarded as too small to "fool with" here in Tennessee. However, once we visited the Chiari Malformation Institute in New York, we learned it didn't matter the size, but size relative to the opening. She successfully had lower spinal decompression surgery in order to release the nerve bundle at the lower end of her spine allowing the channel to spring back up where it was supposed to be. That increased the channel and flow of spinal fluid so that she could again walk. Of course years later, the bundle of nerves have tethered back together, and the next step would be the back of the skull surgery.

Point is.. don't allow doctors to tell you that a 3mm herniation shouldn't be affecting you as it does. It affects your daily living, so it must be big enough to affect the passageway. Seek out a 2nd opinion. Particularly Dr. Bolognese, as Dr. Millerot has retired.