Chiari Malformation Community
I saw an NL today...
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I saw an NL today...

I haven't seen one really, not before or after surgery until today.  When he came in I asked if he was familiar with Chiari Malformation and she said "yes" but with a tone.  Followed by it's a benign condition that is an incidental finding on MRI's...I said "not if you ask a lot of people who have it."  Then I told him I had surgery and he was shocked, asked me who did it, what my symptoms were, where it was done.  Then he said "so why are you actually here to see me”.

The rest of the visit went better, he was truly shocked that I had surgery, but asked me several questions about what got better and my recovery time and how I feel now.

He did an EMG test which came back normal, and said the Chiari isn’t causing my arm pain.  He thinks is it a repetitive stress injury.  My arm is killing me now!
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992677_tn?1337358095
No offense intended here... but I'd take this with a grain of salt.

Some of my most severe symptoms where my shoulder and arm. I used to throw football passes further than most guys can kick it. They put me though emg, eeg and even a couple of ekgs [ekg 3 times last year] along with other garbage trying to find the source of the pain in my arm. When I finally seen a Chiari NS his PA right off told me to mention it to the Dr as it can be a symptom. Well post op, that was one of the first things I noticed was that I could lay on my arm again, much of the strength was regained very quickly. I fear there is perm damage but for the most part I can use my arm again after nearly 10 years of having a useless limb due to pain. Your case may be different, but with me they blamed everything else in the end decompression proved that it was due to Chiari related compression.
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620923_tn?1405964489
Hi Kim...glad u have a NL, but hate the fact we have to go thru that crap ....y can 't they understand what this condition really is and does to those with it??

Also I am glad u were able to turn the appointment around.....what is going to be done about ur arm??

"selma"
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539750_tn?1226525277
Wolf, it wasn't offensive at all! I was hoping it was Chiari related and that it would be fixed, even if partially.  I am glad you got some relief and some usage back.

Selma, yeah it was annoying, I wasn't sure if I should just walk out after his comment.  i took it as a chance to educate him and I think he was receptive, although I don't think it will stick.  It's a predjudice, he did review my chart and both my NS and the NS I saw before Dr. Won both wrote in the notes that they offered the surgery.  

I have no idea what to do now.  My arm hurts and my hip (leg hurts).

Arm -
X-ray normal, although noted sublaxation of the ulna joint
MRI -ganglion cyst and something funny with my lunate, otherwise unremarkable
Nerve and EMG normal

So they think it's repetative stress, with no plan of follow-up or action.

Hip -
x-ray normal, only testing so far

I am at a loss how I can be in pain and keep having normal tests...I just keep searching for answers.
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620923_tn?1405964489
And u were tested for Ehlers Danlos?

It can cause the  sublaxation and muscle pains....I went to a dr thinking something was wrong with my elbow...they felt I had hair line fractures from a drop attack....then lupus....which then was dx with chiari and then EDS....I was told that the joint pain was from EDS....

It is something to look at again??

"selma"
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1179332_tn?1297482590
Funny...I just had an experience that was so similar.. I just saw a new NL as well ( I did have one b4 but he was a total jerk). Anyhow, this NL knew I had surgery but seemed very skeptical about it especially after she went over my EMG/ENP tests and saw that for the most part they were normal. She questioned me a lot the same way about what I was like before vs after...I was hoping she was asking to learn something. I too, judge it being chiari or not by how I recovered after the decompression. All the specialists thought that it couldn't possibly affect my gait to the extent it had BUT it was the first improvement I had.

I have the same pain...always in my neck/shoulder arm and down my legs, some days one side is worse than the other but there is always pain in at least 6 different places and my hips really hurt if I do any real walking. I have been told over and over that everything is fine and I'm sure that if I took another EMG that I would pass it but I have no faith whatsoever in that test...I don't think it's a good indicator of damage from CM. I have decided to try the rehab route, seems to be my last hope, everyone is telling me that I just have to retrain and strengthen the muscles and that the pain will eventually get better.
Is that a route you have tried or would think about trying?
I am going in soon for this assessment that takes about 11/2 hours and they are going to really look at my gait and my muscle spasms and then decide on how to deal with it. I am putting a lot of hope into it so I hope it works, if it does I will definitely let you know~!
In the meantime, Lyrica and Amitriptyline have helped me a little, especially in the mornings.

Take care
Carolyn
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992677_tn?1337358095
I agree totally Carolyn!

IMHO- the emg and eeg are totally useless tools when it comes to Chiari or perhaps even other related conditions. I've had two emg tests now about 5 years apart both of course said nothing is wrong. Same with the two eeg testings. The first eeg the tech noted something as she freaked out but of course the NL said everything was normal and tech told me she isn't allowed to discuss it with me or she'd get fired.

Redkim-  My wife purchased a large bag of rice. She then sewed up a kitchen towel to make a nice flat heating pad for my shoulder blade. And another for my neck and upper thor area she just took a heavy sock and filled it with rice. You just microwave it for about 90 secs and then as hot as you can take it put the towel on the effected shoulder blade and the sock rested along the spinal column all the way up your neck. Some days I can't stand this but other days it will totally calm things down. Not that it takes the symptoms away completely but it does really calm it down some days. Once in a while ice helps... but for me it normally causes spasms.

Wolf
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