Hello - my first post. - I have ACM 15mm.
 

Hello everyone. This is my first post here.

I have a Chiari Malformation Type 1 (says 15mm on my charts).

My symptoms however, seem very mild compared to some things I read from other people. Basically right now I have headaches that come on mostly when I'm busy around the house. Comes on from bending down to pick stuff up, or pushing a vacuum around, or choking/coughing or a rough sneeze. The headaches can be anywhere from an annoying persistent ache to a pretty horrible pressure for which there is no remedy but sitting or laying down with my head back, low light, low noise, where it can fade. That's what made me want to see a neurologist and get an MRI. I wanted to rule out a tumor.

Another symptom is connected to the choking thing. I seem to trouble swallowing sometimes. I'm not sure how it is for others, but for me, it's like this lack of coordination that happens when I'm drinking sometimes. I'll just swallow wrong or not enough, or whatever it is, then I'll gag/choke pretty badly, and then of course the headache kicks in.

Another symptom isn't very often, and doesn't happen as much as it used to (it used to happen years ago when I didn't have the headaches, or did I, and maybe I just didn't notice because they weren't as bad?)... but my vision will blur sometimes. Sort of an unfocusing of the eyes that I can't correct. Again, it's one of those thing where I just need to close my eyes and wait for it to fade. Once or twice a number of years back it happened while I was driving, and I'd have to pull over until it passed. It usually passes within a few minutes, but still a very weird thing that I'm sure most people don't experience.

Other than that, I think that's it. I don't have a real dizziness, no passing out, no nerve problems, no insensitivity anywhere, nothing like that.

When I write it out like that, it does seem my symptoms are more significant than I seem to think, but definitely not as terrible as I've read from some folks who have ACM.

I'm going for a second opinion on 8/12/09, but my first neurosurgeon (who is renowned in my area) seemed to think surgery is a no-brainer (no pun intended) for my situation. He stressed the possible additional symptoms that could very well start manifesting themselves. The passing out and nerve problems, etc.

My biggest concern is... what if my headaches are not in fact anything to do with the ACM? I mean, I have no other explanation, and it makes sense, but of course I can't help ponder that.

Is there anyone out there who has had a symptom set similar to mine?

I have no surgery scheduled yet, as I wrote, I have a second opinion appointment in a week or so, and I'll see what that neurosurgeon thinks.

No replies, but that's ok. I've gotten a 2nd opinion from another neurosugeon who completely agrees with my 1st neurosurgeon and my neurologist, that surgery is very strongly recommended, and I should wait no longer than 2 months (6 months absolute max).

So I'm probably going to do the surgery at the end of Sept or beginning of Oct.

good luck, ....this forum isnt that busy and i suspect some may be on vaca....

Good luck!
 

Skiltrip,
I hope everything is working out ok for you. I have symptoms similar to yours if not just a little more severe becuase I have started showing signs of nerve damage but I am having the exact opposite reaction from my doctors. They think that I need to do everything in my power to avoid surgery and it should be used as a last resort. I know that surgery (especially brain surgery) is major is isn't something to take lightly but I would like someone to even consider it a possibility because it is the only cure. Like you said, some symptoms might not improve like the headaches and the pain because there is no way to prove that they are connected to the chiari but at least the nerve damage would stop progressing (or in your case, wouldn't have a chance to start! WOO HOO). Please let us know how things turn out for you. I have another appt sched for Oct 1st to discuss surgery again but we'll see if anything changes. I hope everything works out for you! Thanks

-Sarah

Chiari
 

THESE ARE THE SYMPTOMS
http://chiarione.org/symptoms.html

And another pieceof advice if you have been al;ready diax you need a Neurosurgoen not a neurologist and you need a specialist.

My name is Angie! I am not sure how to reply on this site so i hope this works! I also have all of the symptoms you have discussed! What you are experiencing are exertional head aches! Without the decompression surgery I am guessing it wont get better only worse! That was exactly what happend to me anyway! I also thought I had a tumor! How scary! The decompression surgery extremely helped the exerional head aches! They completely dissapeared! I do have problems with liquids and choking!!! You are not alone and I wish for you the best of luck! Please research your surgeon! Make sure he has done MANY decompressions!!! I wish you well! Sincerely Angie:hug:

Hi Angie. I appreciate your response. My surgery is actually scheduled 1 week from today, on Sept 23, 2009. I had my pre-op stuff yesterday (bloodwork, EKG, etc). I'm very nervous, but your sharing about your exertion headaches going away is VERY comforting. My biggest fear with this is that I'll end up worse off than when I started.

Fortunately, both neurosurgeons I saw were very knowledgeable in Chiari Malformations, and I went with the one that I felt the most comfortable with.

Thanks for sharing. 1 week to go! *crossing fingers

- Kip

Sarah, Here's hoping your doctors wise up and get you on the right track. Both neurosurgeons I saw (totally unconnected to each other) both gave me the exact same reaction and opinion on it, that surgery was the only option, and shouldn't be put off for longer than a few months.

Your post is encouraging. I haven't thought much about symptoms I could possibly end up with if I DIDN'T do the surgery. I have only been thinking about what my symptoms are, and how they are mild compared to a lot of people's stories.

6 days and counting. And good luck to you in your future doctor visits.

kip

had my surgery 8 days ago today. slow and steady wins the race. the first few days in the hospital were hell. there's just very little relief or comfort available right after the face, and i had trouble with a lot of the painkillers they tried, as well as a potassium IV drip that felt like it set my arm on fire.

I was only in the hospital for 3 nights, but it felt like forever, and I was glad to get home, and be able to take my pain meds on time, and rest when I wanted, and mostly to get all those IVs and junk out of me.

I'll post again in a week or so. Getting my staples out this coming Monday.

kip

Newbe
 

I am also newly diagnosed as well with a 12 mm chiari. Mine was missed by the radiologist but caught by the neurologist who just said "oh it's looks like you have a chiari but it doesn't look it's bothering anything". I then went back to our radiologist and asked for a measurement. That is how I know how big it is. Since the measurement, I have only seen my rheumatologist and fam dr. No one really seems interested...

I too would consider my symptoms as mild and confusing at best. I have the headaches with straining, laughing or crying. The rest of what goes on was suspected to be autoimmune of some type but undiagnosed. They are treating me for fibro and hypothyroidism. I think they are making a stab in the dark. I had extreme fatigue and bilat pain in my fingers and feet. At this point I am on so many meds that I don't know what's real and what's caused by the meds. I am starting to choke more but my mouth is dry from meds...I am starting to loose by balance more, but maybe I might have a sinus infection...I have edema in my legs but that could be from meds... I had the "dropsies" for a while but it got better... I lost movement of the first three digits of my left hand for about a month, but it resolved itself... See what I mean?

I am unsure where to go next. Are there any chiari drs around west Virginia? I live where west Virginia borders Ohio and Kentucky...any thoughts on symptoms or specialists would be great.