Migraine

Well, my GP FINALLY called me back.

I have a Chiari Malformation.

Go me. I just called my migraine specialist's office and left a message for someone to please call me back about the tonsil thing. My GP's office says that the droop in cerebellar matter is "no big deal" but to me, this may be the Holy Grail of clues...Why do they say these things aren't a big deal? But I understand that Chiari is not well understood by a lot of doctors anyway.

I have a little under 4 months left of my PFO study (short term--long term I have 4 more years, but after 1 year I can move ahead and change preventives or whatnot). So in the meantime I am going to try and find a neurologist and find out what I can do to control this or halt its progression.

Freaking out right now would be an understatement...I'm so rared up and ready to go I'm shaking.

Leeloo -

Listen, knowledge is power, right? Not like having a Chiari malformation is good news, but it's better to know, isn't it? I guess they say no big deal to try to keep you from worrying. I hope you find someone who knows exactly what to do for you. At least now you can explore treatment possibilities.

As for the nurse practitioner - maybe she calls everything she's unfamiliar with a tonsil?

I really hope this provides the missing link that makes the difference for you. Sending you all positive thoughts & prayers.

- megs

Ok - no freaking out allowed.

But we do need to investigate this after the PFO is over. This could be creating a lot of head pain and other symptoms.

Have you seen this article:Chiari Malformation Information Page?

And that nurse should be slapped repeatedly.

I'm sorry about the Chiari diagnosis, but it's always good to have answers, so any news is good news, in a way.

Hopefully, you will be able to find a great doctor who will help to navigate this with you, and treating this will be straightforward. I know that mild Chiari malformations are sometimes just watched closely. But I've also heard of people having great improvements from surgery to correct this.

I don't know if you saw the Extreme Makover: Home Edition show on the Carter family, most of whom have Chiari, but the Mom, Julie Carter, is an amazing and phenomenal person. She runs a group called Chiari People, which helps to spread information and support all across the country. People rave about this resource. I know about it because it's local for me. My niece even went to high school with her daughters, who also have Chiari. Anyhoo, here's a link you might find helpful...

http://www.chiaripeople.org/articles.php

Perhaps things won't seem so overwhelming with some strong support. Julie Carter is a master at helping people not freak out, and gives so much.

Hey Leeloo,

I don't know much about chiari malformation, other then the article Nancy gave you. But, like droolie says, sometimes just knowing is better then not knowing at all. And for the office saying it's no big deal...she's not the patient (maybe we should pull her tonsils LOL)

I will be thinking of you and sending you positive cyber-vibes Hang in there!!

Dar

Thank you guys, I appreciate your comments and advice, and thanks for the link, Droolie. It looks like they have a lot of resources, so I will be looking into this further.

I heard from my specialist's nurse and they are hesitant to call it Chiari, but told me the doctors were planning on discussing my MRI report and pictures with me at my appointment on Wednesday. Well, if it isn't Chiari, then WHAT the heck IS IT? I've read that sometimes doctors dismiss Chiari under 5mm but even Chiari at 3mm has been known to cause issues for many people. So I'll be approaching the issue from that perspective.

If I am symptomatic, then what's going on? Certainly I am not falling down and having dizzy spells for no reason! I can't be running into things all the time if there isn't a problem somewhere, and I run into things constantly.

I don't know. I am so depressed right now and I just want something straight from someone that doesn't take forever.

But I'm glad my specialists are prepared to address the issue, and we'll go from there.

Isn't Chiari Malformation what Teri has? That's also called pseudotumor cereribri (hope my spelling is close)?

Leeloo- Just wanted to let you know I'll be thinking of you today I hope your appointment goes well- and the doctors will be more informative of what is going on. Please keep us posted

Valerie

Leeloo,

My heart goes out to you. I'll be thinking about you today and keeping you in my thoughts and prayers that you'll get some definitive answers soon. Please keep us posted!

I think, but I'm not certain, that Chiari malformation and Pseudotumor Cerebri/Idiopathic Intracranial Hypertension are quite different.

Nope. Chiari malformation and pseudotumor cerebri are completely different things.

quote:

Originally posted by MedievalWriter:
Isn't Chiari Malformation what Teri has? That's also called pseudotumor cereribri (hope my spelling is close)?

Hi guys,

I saw my specialist today. He said that the report did not indicate Chiari, but questioned my legs giving out on me for no reason. He said that my malformation was across the "normal" variance in the population and said it was nothing to worry about.

I will do a bit more research before I decide to see a neurologist, however. I did find info on "Borderline Chiari" and people who'd had problems with even a small malformation; no syrinxs, things like that. But, I am not sure that "borderline" is a diagnosis but one of the sufferers had seen a doctor who felt that even a small malformation could cause problems.

The good news is that my CSF flow was normal and there was no indication of any undue pressure on my brain, or any other trauma.

So, part of me is very frustrated, because logically it doesn't seem to be Chiari, but I know my symptoms and in my gut I just feel like there's something to this. What really upset me today was that he said that sometimes people are just clumsy, and am I watching where I am going? I didn't feel like we got on well today, because I told him yeah, I mean, I mostly stay at home or I'm at work, it's not like I don't know the obstacles in the way, and it's not like I don't admit when I've tripped over my own feet or whatnot...But seriously, how stupidly clumsy can one person be? I have horrible balance. Maybe I need to work on some balancing exercises?

He admitted though that he wasn't quite sure what was going on, but he felt that most of my issues were migraine related, and severely at that. I don't know? Am I looking too hard for answers? Should I accept this as Migraine Disease at its worst for me?

The good news is I am far along enough in my PFO study that he was able to switch my preventive medication from Toprol to Trileptal. I indicated that I was having severe issues with depression and fatigue and that I was, indeed, suicidal when in extreme pain, and need supervision at those times. So hopefully the Trileptal will help mentally as well as physically.

So, I'm a little confused and upset and sort of angry, and I'll let this rest for a while and attack it again later.

Hi Leeloo,

I saw that you are starting Trileptal, and just was wondering what specific reasons your doctor chose it over other drugs?

I have taken Trileptal for the last four years but recently saw the study mentioned somewhere here on the site about it not being particularly useful for migraines. I plan to ask my neurologist about finding a better drug for migranes instead of trileptal.

I started taking trileptal to control severe muscle spasms, for me it has been wonderful in that regard. But I am still having two or three migraines every ten days.

Mary in NM

Leeloo- If I'm confused, I'm sure you must be confused as well! First they tell you you have a Chiari- then they tell you you don't. Then the doctor says maybe- then he says he just doesn't know, maybe you're just "clumsy". I'm sure you're pretty worn out at this point from all the emotions you've been through!
Here's a hug The good news is, it sounds like you don't have a Chiari. I hope you find some answers soon! Please keep us posted!

Valerie

Hi guys!

The difference between Chairi and IIH is Chairi is when a part of the brain "the tonsils" as they call it, distend down into the top of the spine. I believe there should be a picture in the link Droolie gave you.

IIH is when there is increased spinal fluid that is not being absorbed into the body.

I believe Chairi can be determined by an MRI, where IIH can only be determined by a Lumbar Puncture.