Possible Chiari I questions
 

I was recently involved in a car wreck. Actually a semi ran over me. That being said I have had ACDF surgery at levels 5/6. I'm still trying to get over having my spine fused and then I find this on my MRI report which was done before my surgery. Does this sound familiar with anyone?
The findings for C1-2 Appoximately 7 mm caudal descent of the cerebellar tonsils. Findings most likely due to Chiari I malformation. Not enough of the brain is examined to exclude other causes such as intracranial hypotension.
Now I'm concerned. I do have an appt. with a Neurologist in mid Dec for SEVERE headaches but I want to know what I should be prepared to hear because this is all new to me. I have muscle weakness, neck pain (since I just had surgery hard to tell if that's the cause or not.) My legs and arms are either tingly or numb more often than not. I blamed that on the symptoms which caused me to have my spine fused in the first place. Now I am scheduled for a new MRI but this time it's for my lower back pain that radiates down into my leg. Sorry to be long winded but The last line of that MRI report has me the most concerned. I had never even heard of it until after I had surgery to release the compressed nerve in my neck. I'm not asking for a diagnosis from anyone but honestly I'm scared to death. This does not sound good AT ALL!

First of all, take a deep breath. I remember so well how scary this is. My daughter, now 11, was diagnosed at age 4 with Chiari I malformation and associated thoracic syrinx. Her spine looked like it had sausages in it. Her tonsil desent was 8-9mm. Just after her 5th birthday she had the decompression surgery. She went to church the day before she checked into the hospital and she was back in church the next Sunday! Amazing. The surgery went very well and just last December (07) she went in for her regular check up and is completely recovered. No syrinx whatsoever. She has had an MRI every 2 years and we have watched it shrinking over the years. It was really gone after 3 years, but we still have her checked, especially if she starts having headaches again.

All your symptoms indicate Chiari- but just remember I am no doctor. They are very familiar symptoms to me. I would be so frustrated if I had to go through another surgery after what you have already been through, but it does not get better on its own. Go on-line and find out as much as you can. Take your health into your own hands and ask for what you think you might need. Make the doctor explain in detail what the MRI indicates and what it means and what needs to be done. Tell him to use English so you can understand! The best way to conquer fear is to educate yourself so that you know what is going on and are not just the body everyone is operating on, you know?

The University of Washington has a good website on chiari, but I'm not allowed to post links yet. Try Googling Dr. Ellenbogen, who is the head neurosurgeon and who did Emily's surgery.
Hope that helps,
Deb

Thank You
 

I'm glad that your daughter has had a good outcome. I am reading reading reading. I'm just baffled because my Orthopaedic surgeon said that he saw nothing on my MRI report that would be the possible cause of my headaches. Then I read that. Maybe it's simply because Chiari is not in his realm and he really doesn't understand it. Here's is one thing that is most concerning to me. I also post on another board and there I read that someone had Chiari and they corrected it first before they did the ACDF surgery to prevent complications. Now I've done this in reverse and wonder if my symptoms now aren't because of this. Thank you so much for the reassurance. I really needed to hear that Chiari surgery can have a good outcome if I have to go that far. I've asked and asked and can't seem to get very many questions answered. So I cannot thank you enough.

Everybody I talked to before Emily's surgery told me that her headaches could not be because of the chiari because she told us they were in the front, not the back. However, her neurosurgeon told us that the body is a wonderful thing and different people experience different things. Her headaches are now gone. Chiari is not well known, so it is possible your doc doesn't understand it. I would ask for a neurosurgeon to look at your MRI if possible.

I just met my newest neighbor and guess what? She had the decompression surgery just last year! She has had a good recovery to the surgery, however she still gets headaches and is having a more difficult time coming off the narcotics for pain they had her on. It reminded me that Emily had a bad reaction to morphine after her surgery and had horrible headaches until we asked that she be taken off it. Once they swithched her from morphine to Tylenol with codeine she did much better.

Ah- I just read again that you go to see the neuro in December. Start now writing down all your questions and take the list in with you. Trust me, you will not remember everything to ask without it! You can ask for a copy of your MRI, if you don't already have it, and take it with you. Ask him to explain whatever you don't understand.

One thing that bothered me most about the whole thing with my daughter is that whenever I told people about it, they dismissed her condition as not being that serious. They did not get that this was brain surgery we are talking about here! We are messing with the brain and the spine. But because it was not a tumor, well, it was not that bad. I started showing people the picture of her open brain to show people that this was more than a simple procedure.

You have already been through so much. You do not need more trauma. I do hope so much that you get a good neuro that will answer your questions and be compassionate.

Thanks Again
 

You know what. I've made up my mind that tomorrow I am going to call the Neurology group that I am setup to see. I want to know that they have someone on their staff who understands and has treated someone with this diagnosis. Not just read about it in a text book. I'm in the same situation in my heart. I have a PFO (Patent Foreamen Ovale.) It's the hole in the unborn baby's heart that closes after they take their first breath. Well mine didn't. It too is pretty rare and is rarely treated. Most of the time when they find it you're on an autopsy table while the pathologist goes through your body parts and finds it. I had a doctor when I lived in Texas who wanted it closed but since being back home in TN no one up here will do it. Almost makes me want to move back to Texas before I have a stroke. But right now it's one of the very least of my worries and isn't bothersome. It just allows blood to flow backwards through my heart and I can feel a little burp. But Chiari sounds much less controversial than my PFO so maybe it won't take me months to find someone who can and will treat this. I promise you. If you stand in a room full of cardiologists and say PFO. They will still be standing in the same spot in the same room 2 days later arguing over whether to do surgery or not.

I, also, want to reassure you that there is hope. I learned , after having two rear end collisions two years in a row, that I had Chiari ( 8 mm tonsillar herniation) and a c1-t2 syrinx. I was shocked at the time but in thinking back I had a lot of symptoms that were unexplained before the accidents that the doctors were never able to figure out. Headaches, fatigue, muscle pain.. At least there was FINALLY a reason..

I had surgery almost immediately because I the doctor I saw was our _ family neurosurgeon" .. I trusted him because I was scared and he assured me that he " did the most of these in all of Wisconsin" . I learned that while he was a great brain surgeon, he was NOT a chiari/ syringomyelia expert ( I didn't know that there WERE such people t the time) . My lesson after a failed chiari surgery ( although the syrinx is better after putting in a shunt ) , is that doctors like the ones at the Chairi Institute KNOW Chiari.. It IS there passion. I learned this later and better later than never.. BE INFORMED.. BE EDUCATED.. GET ANOTHER OPINION.. It is YOUR BODY AND YOUR LIFE.. If you contact ASAP. they can help. Every year there is a conference.. In July, It'll be in Madison, WI .. The doctors who soeak KNOW chiari.. It's what they do and what they are trying to explain and hopefully one day fix or even prevent. You'll never regret it.

Take care! Lauri

I found that there is one doctor near me who is considered an expert in treating CM. There is a waiting list a mile long to get into the clinic that he practices in but I'm wondering if I might be better off with going straight to him even if I have to wait a while longer. I am quite honestly tired of doctors and pain pills that make me stupid and I really want what will give me my life back sooner rather than later. I have a 8 month old grandson that used to spend every Friday night with me but I haven't been up to it since my wreck. I miss it more than anything. Me and him and Saturday morning cartoons. That's all I want.
As a matter of fact I just got a packet in the mail yesterday from ASAP. I'm just pouring over all of the information I can find before I go see a neurologist. I want to go in armed with information. I just hope this turns out to be not as serious as I am making it out to be. That is my hope and my prayer.

Sounds like you are doing as much as you can to be prepared. You just might want to go straight to the CM neuro- that way you will avoidgoing to many docs just to end up being referred to him!! Good luck, we are pulling for you.

Thank you so much. I really think I'm going to be doing a real disservice to myself and this Neurologist if they don't understand Chiari. But I do want to hear from some Neurologist what I'm looking at from their point of view. And typicalfam it does explain so many of the symptoms that I have had for years. I've had a ringing in my ears that never goes away anymore. And my eye has a constant twitch that is more annoying than anything but I wonder if I may have just found an answer. But oh the headaches. I cannot even begin to explain the pain.

Yes, my daughter had a headache that never went away-it was just a matter of what degree today. One thing you might like to try is rosemary. The herb eases headache pain. I suffer from migraines occasionally, so I actually have one in my house. The smell of it isn't pleasing to everyone, but I like it and it is amazing that it works! My daughter just smells it, I usually make a tea of it and drink it. It may not take the headache away, but it may help some. If you use dried rosemary I'd make the tea, but it is actually the smell that does the trick.