Migraine

Hi Leeloo,

I didn't want to hijack Island Girl's post, but I wanted to chat more with you about Chiari. You can absolutely have HUGE problems from very little herniation--or none! Thus the term, Chiari 0. My mom is a good example, as she has tethered cord (spinal cord is attached at the bottom where it should be free) and cranial cervical instability (the muscles and joints in her neck are unable to hold up her head) so her brain is basically being pulled down and pushed on by her skull. She wears special neck braces all day long to hold her head up. She's awaiting surgery currently.

If you didn't check out the videos on the TCI site, I'd highly suggest it. What was eye opening to me was the fact that I know a handful of people who have been diagnosed there, based on things found on tests that other doctors had missed! I just want to say that although any herniation you have may not get worse, if you have Chiari your symptoms can definitely get worse!!

I'm not sure what your exact heart problems are, and how those factor in to Chiari... I know that mitral valve prolapse is really common with Chiari patients but I don't remember anything beyond that. Half the people I know with Ehlers-Danlos have been helped by TCI it seems, so I get most of my information from their experiences or TCI. If you are diagnosed with Chiari, you may want to see to take a look at EDS, I don't remember the exact numbers of cross-over patients, but I remember it was high.

I hope you find your answers soon, pain is such a miserable thing to live with.

Candace,

Thank you so much for this information! I will check the TCI site out for sure.

I have a PFO, and am in the ESCAPE study currently. I find out about closure/surgery in less than 2 weeks, and since I might have to have the procedure again (if you didn't get it the first time they pop it in after the study), I put this on the back burner, because I can't do anything else medically until the study is over.

My husband is siding with the specialist for the time being, despite my repeated attempts to tell him the malformation doesn't have to be severe to cause problems...The specialist and I had a big argument about what being clumsy is. He said some people are just very clumsy. To that extent, I said, not like this....I run into things constantly. Doorways. Walls. I trip over my own feet...He asked if I was watching where I was going. Come on. I said these are environments in which I've worked for years.

So, my specialist and I were irritated with one another that day for obvious reasons. He actually told me that I might be able to find someone to do the Chiari surgery for me regardless of my malformation, but he didn't recommend looking for that! I thought, whoa, slow down mister. I'm not looking for surgery again, I just want answers!

Again, thank you...It helps hearing it from someone straight rather than pulling from miscellaneous sites on the internet, because I never know who is saying what for which reasons. I'll be sure to open this up with my husband again. Either way I will be seeing a neurologist come November.

I hope you find some real answers! I've definitely had doctors downplay some of my problems--and I think that more complex your problems are, the more likely they are to do so. Since EDS isn't commonly diagnosed, a lot of doctors only know about the extremes--if you don't fit into the box, they tell you that isn't what it is. I've always just sided with the specialists. So for me, not just a geneticist, but one who deals with EDS *specifically*!! Same deal with Chiari.

Don't let anyone tell you that you're just "clumsy"! You know yourself, you know what normal is, you know how it feels--and you can tell when something isn't right!

This is an article that I've read a few times... it lists a lot of the symptoms that are reported by Chiari patients. I've also read over the questionnaires that my mom filled out before TCI decided whether or not she should come see them. It's a huge variance of symptoms. You're dealing with brain stem compression... so everything spiders out from there.

http://www.conquerchiari.org/subs%20only/Volume%202/Iss...0Symptoms%202(5).asp

I don't know much about PFO and it's effects on other areas of the body, but I hope you get some solutions this month. I do the same thing, focus on one thing at a time so I don't confuse things. Finding someone with the diagnosis that you are suspicious or curious about it always your best bet. Nobody knows it better than the person living with it--especially when it took them years to figure it out!

Candace, I can't express well enough just how much of a help you've been. I printed off the questionnaires for Chiari from the TCI and will send them off as soon as I know about my heart situation.

I talked to my husband too and let him know this is an avenue I plan on pursuing until it's proved that it's nothing. He supports me in everything; he's just very cautious and doesn't want me to get fired up too much when we don't know.

The article was great and it just reaffirms my frustrations with my doctors. I have a lot of vertigo and ear fullness problems. My opthamalogist told me last year too that I have some tracking problems with my eyes. I can't help but think that only makes the balance problems worse. There were more symptoms that matched too...My head is starting to bang and I need to get to bed here, but I was anxious to let you know how much I appreciate your words and support. I'll be checking out those videos as soon as I can; tomorrow I have my final study echo so I'll be pretty busy with my husband and doctors!

Thank you!

Hey Leeloo,

I'm glad to hear my yammering was helpful. It's really encouraging to me that even when my research doesn't provide any answers for me, it can still be helpful to others!

Good luck at your echo tomorrow!