Painful Days

Hello Everyone,

I have stayed away for a while, thinking that if I did not read about others pain I would forget about mine. I been getting the run around by the Dr. at Kaiser. They keep telling me that my pain has nothing to do with the CM. I have been labeled with Autoimmune, in other words they do not know what I have and do not want to agree it is the CM. I am in pain everyday ranging from 4 - 10, my right side of my face and eye droop down as if I had a stroke. It could last 2 - 7 days. I was told back in 11-2013 that I had the CM and possible Myastheina Gravis. They keep testing for the MG, but it does not want to show up in the blood test. I have spent a whole year getting massages 2 - 3 days week per the neurologist, with no relief . The end of December I just could not take it any more and stopped. I am know finding my self in more pain and seeking acupuncture not sure it will help, but willing to give it chance. I do not like taking narcotics, but do at my worst days.

I am finding that my family is getting bothered or annoyed with my illness due to not being able to work. I find myself in so much pain and not wanting to do anything. Is this what everyone is going through.

I understand u so much. I went to a doctor who told me he didn’t want me as his pt anymore so this was the man who done my surgery he told me he had done a lot of these surgery and I would be fine would return to work in 2-4 weeks its been almost 2 years. I have such bad pain in the right side of my head I think I am going to die. My husband has been great but my parents can’t understand the pain that I am in if they can’t see we’re u are hurting to them u aren’t hurting. Now I don’t sleep can’t work I do try to keep the house clean clothes washed things like that but there’s some days I can’t get up. But I understand u trust me I have a doctor appointment with a new doctor at Vanderbilt in Tennessee I an scared that when I start to telling her what is wrong with me and the things I have been feeling she might think I am crazy I am sorry this was so long I just get happy and sad when I see someone with the same problems like me. Maybe we can share some more stories and help each other threw this.

Chika50, I don't know if you've had the surgery and are still having pain or they don't want to do the surgery? Anyway I feel for both of you--Debra--we know you're not crazy--pain and poor quality of life MAKES us crazy and we just want help. But for everyone--as far as I can tell this adult chiari surgery is still so new/recent, and we're all so different with our own malformations, that I think many drs don't know what to do with us. And many of the surgeries aren't being done as well as they should, I don't know.

We need to find drs who really know what they're doing or they can't help us. I've spent weeks online to find someone who I think will be able to help me and "do it right the first time". But you never know.

Praying for you guys.

BY blood test for MG I assume you mean Acetylcholine Receptor Antibody or Anti-MuSK Antibody testing? A positive test can confirm MG a negative test is is not significant as about 40% of MG patients have a seronegative form.

There is nothing new about the "chiari" surgery. It just doesn't do what many patients expect it to do or what many "headache Surgeons" sell it to do.

MG is one of the more treatable Auto-immune diseases out there, I would assume if they have not started treatment they are looking for more specifics as inhibiting medications for the antibodies are pretty specific as are the filtering processes. In the meantime you may want a referral to pain management to get you through the gap. The type of nerve reactions that would lead them to suspect MG are very different than those from CM. Have they done any flow studies to see of CM is a problem?

Thanks you all for your responds. The only medication that was given to me was for the double vision and the only studies have been the blood test. The NS at Kaiser is adamant that it is not the CM. I have to go got of Kaiser and pay out of pocket to see a different NS. That is my next steep. Not sure I want the surgery. If I can get the droopy eye and 1/2 face from dropping and feeling numb and tingly that would be great.

TJ1, is there any other test for the MG?

There are a number of tests. The edrophonium test is fairly common. They inject edrophonium chloride (Tensilon) which may result in a sudden, although temporary, improvement in your muscle. Although with a negative blood test this one may not show much

If you have a droopy eyelid, places a bag filled with ice on your eyelid. After two minutes removes the bag and analyzes your and check your eyelid for signs of improvement. look really close............

There are two nerve conduction studies. My favorite is the repetitive stimulation , where they attach electrodes to your skin over the muscles to be tested then send small pulses of electricity through the electrodes to measure the nerve's ability to send a signal to your muscle. If its MG myasthenia gravis, they will test the nerve many times to see if its ability to send signals worsens with fatigue. The other is what they call Single fiber Electromyography (EMG) which measures the electrical activity traveling between your brain and your muscle. It involves inserting a fine wire electrode through your skin and into a muscle. In a single-fiber EMG, they test a single muscle fiber. This is NOT a fun test.

Another way to seperate things is with a Pulmonary function Study. IF you have decreased function, then it likely is MG and not CM

For grins and giggles try the Ice bag test yourself......... Blood tests are cheap, but they are NO substitute for a really good physical exam.