Chiari Malformation Community
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Avatar universal

New poster, bad Chiari symptoms and how to deal?

So back in late August I saw a geneticist, one of the best in the world, and she diagnosed me with Elhers Danlos Syndrome type 3, POTS, mast cell activation disorder and after getting imaging back in mid September, a Chiari Malformation of 3.5mm.(I know a technical Chari is 5mm or something?) but my symptoms have been really bad for about 6 or 7 months now. Before then I was getting migraines every so often(maybe 5 times a month?) but in June I started noticing that I couldn't write(I'm a writer) without misplacing numbers and letters. Then by late July/early August it was enough to affect my reading and reading comprehension as well(almost like dyslexia which I've never had in the past). At the same time(in early September) my migraines increased in severity and frequency and by the end of the month I was having severe migraines every single day. In October I developed problems with dexterity(mostly aligning things to put them away, like putting something on a hook or whatever) and I also developed a problem with  choking and gagging on my food. It's not everyday but it's frequent enough that it's a problem. It seems to be worse on days where my tachycardia is worse which in turn makes me nauseated. It's happening I'd say maybe 3 days out of the week? I had an endoscopy to rule out other causes of the gagging and stuff and it came back normal. So I'm scared it could be neurological. And in December I developed periodic ringing in my ears and more concerning to me pain at the base of my skull and down my neck that won't let up. Because of my Ehlers Danlos I do PT, and medical massage but it isn't helping the neck pain. I'm just concerned about all of it because of how rapidly it has come on? Like I'd give anything to go back to June where I was only having some writing problems and the occasional migraines. I have a neurologist but he doesn't seem to know about any of my conditions. My primary Doctor is more concerned but I'm having trouble getting in to see the neurologist(s). I'm seeing one at UVA and one in Maryland that my geneticist wants me to see but the Maryland appointment isn't until April and UVA has yet to even give me an appointment(even tho my PCP wanted me seen ASAP back in November). So now I'm just in waiting and suffering so bad every day. I don't know what else to do. My migraine medicine has caffeine and agitates my heart rate, I take a beta blocker at night and I don't have enough pain medicine to be taking it every day for headaches especially when it can't get rid of it. Have you guys had similar symptoms due to Chiari? What do you guys do when it gets unbearable(it has been the last few days, my brain feels like it's trying to explode through my eye.) I don't have a reliable Neuro anything to call and my PCPs office never gives him my messages. I feel so lost and I don't know how much longer I can deal with this pain. ☹
3 Responses
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

First it does not matter how long or large a herniation is to be considered Chiari or not....I know Drs use 5 mm's to classify it as such but Chiari is a malformation of the skull not the herniation of the cerebral tonsils...that is an effect of the smaller space due to the malformation....sigh,,,,,

What you need to find out is what other possible related conditions you may have and if you have a CSF obstruction as it can occur with a small herniation....and a syrinx can form causing symptoms to slowly increase or very rapidly increase.

Chiari symptoms can cycle and flare...so they can be bad for a time and then seem to go away.then come back with all new symptoms....

It is not easy to deal with or get the proper care with out researching the conditions and Drs and finding the right Dr is key.

Not knowing where you are located I can only guess as to who you were DX''d with EDS by...and one of the beat Drs for EDS is on the East Coast....just wondering if you are as well?
Avatar universal
Right right, I knew that about the opening being too small, my brain is extra problematic today. I was diagnosed with EDS by Dr. Francomano at GBMC in Maryland(I'm in Virginia) and she was also the one who noticed how large my head was(apparently from the build up of CSF?) and sent me for an upright MRI of my brain and my neck, which they shot with my neck in multiple positions. The lab result said 3.5mm and she referred me over to Dr. Sandhu in DC/Baltimore area and another doctor who sounded really great but was outside of my insurance. I don't see dr Sandhu im until April. My PCP used to work at UVA so he's trying to get me in down there sooner just so I can get an opinion? But I haven't heard from UVA disputed multiple attempts to contact them.
620923 tn?1452915648

  That is whom I was hoping you saw or praying for maybe one more in the know Dr....lol....

I know Dr F is involved with the Chiari community of specialists.....and they know her quite well too.....so if she referred you it must be a Dr that is not on our radar at this point as I am not familiar with that name.

You will want to start with your INS and see where they will cover you and try to appeal for coverage outside your typical boundaries as this is a necessity to have the best Dr....not ALL Drs are capable of doing this surgery successfully. That is mind they may want to send you to help minimize costs....

The greasy wheel gets the grease...keep calling......
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