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I personally know of 2 people that for years had a CFS diagnosis and were finally found to have a chiari malformation and their issues resolved after minor surgery.
The symptoms of chiari are almost identical to CFS.
Just a thought...
Please just bear in mind that if you're going to have Arnold-Chiari Malformation checked, you should also ask for an MRI of the back itself to rule out Syringomyelia. You'll need one with and without contrast.
Can anyone tell me if this looks like chiari?This MRI has been evaluated and nothing was diagnosed.Apart from that it looks like a part of my skull is pushing my cerebellum, creating a hernia.I am not a doctor and this could be perfectly normal but I haven't seen it in any other MRIs that I am looking at.
I have agonising neck pain, skull pain , burning within the spine. Head pain pressure is severe. Can’t really move at the moment . cannot sleep more than 2 hours. If I sleep I wake with burning pain rising through my body, nerve pain all over. I find it hard to lift my head. I live in the U.K. and we do not have insurance. What hope is there for someone like me to be taken seriously or get anywhere near being reviewed? There are red marks at the back of my neck and into my skull. The GP honestlythought I had been scratching myself. Surgery sound very risky even if I could aAA
fford it. After reading
all this I feel even more hopeless.View attachment 37713View attachment 37714
I am a beginner in imagery but even i can see that there is defo something wrong and yes sounds like what you said. Suggest you go to a forum who can tell you more and get expert neurosurgeon that they on forum might be able to suggest
Do you know if Syringomyelias can show up on MRIs without contrast or is it just more likely for it to show up on one with contrast?
Hello Eva.....I know it's a torturous process...it was bad enough here, but there are answers and I truly think your best chance at this stage would be the with & without contract MRI's.
I do feel, however, that perhaps learning some breathing techniques or meditation would help you considerably. I have no idea what the cause of the rash is....it could be anything from meds to soap, hair shampoo, who knows? I'm not a doctor, just a woman who has been through the same ordeal you're facing. Most of us are in that very position. I've heard recommendations of ribose, I believe, you may want to try it. Obviously some people are helped.
You may have to go to London. I know the medical system there is suffering from the effects of Brexit (my husband's from Bath; my mother was f rom London), so I'm very aware of the system there.
I sincerely wish you well and request that you stay in contact with us. I'll be thinking of you. Yours, Lenora
Hi Eva....It souns like you're taking things back into your hands, and that's good. Also, the rheumatologist could even prescribe an MRI. For the most part doctors don't like hearing the opinions of others, especially on the Internet. Ask him for his help, tell him you need it b/c you're bedridden , you firmly believe the pain is caused by something. It's a misnomer to think that Chiari causes a one-sided headache...that's crazy. It can have multiple symptoms, sometimes as in my case, it causes severe neck pain...and I'm talking severe. Talk to anyone who's been through it and they'll all have a slightly different story. You're computer proficient, send him a letter explaining the situation again, keep a record of everything, and I do mean everything, it proves to be helpful time and time again.
Also, I would start with the breathing techniques. It can take time to really get into meditation. However, the breathing techniques are easy and can be done from the first time. I think you'd find them helpful. Where are you in England? (if you want to tell me. If not that's fine). You're on the right road, just keep fighting for yourself. Contact ASAP, ask for a packet of information (about Chiari, although they used to combine the two) and send it to your doctor, with a note asking him to kindly read this information. I'm truly sorry that you're in such a dark place and hope that the old savior, Tincture of Time, will help. I've found that it always does. Best wishes, Yours Lenora.