New here everyone, trying to get the CM Diagnosis, do I have it?

[NewChiari1]

Hello everyone, I'm brand new to the forum. Wanted to see what everyone thinks about me and my case. I am not yet diagnosed. I go for another MRI today, but I have a picture from early 2013 and no one said anything about Chiari Malformation, yet, over this past year, things have gotten so much worse and I have so many symptoms of it, thus the repeat MRI. The back of my head hurts so bad and I can't describe the pain except to say I can't get to it and it travels down into my spine, across my shoulders and up into my neck. I describe it to others as a feeling like someone has a hook in my brain stem pulling my brain into my spine. Pain meds don't really touch the pain. My CNS (Central Nervous System) is all whacked out.

I was told I have Autonomic Dysfunction in general and also had POTS at one time, but the POTS isn't as bad as it once was. The Anxiety I have starts before I even open my eyes in the morning. It wakes me out of a deep sleep. I get up and the minute I sit up, my CNS starts going crazy, my head also goes nuts. I feel like I'm plugged into an electric socket all day. Xanax does not touch this type of Anxiety. I also get this feeling in the front of my head and it makes me feel like I'm gonna cry, but for no reason. If I get up and move around, even that will get better. Everything seems to be postural. The longer I sleep and lay flat, the worse I am when I wake up.

I have this constant sensation like I'm gonna fall off my chair, or even fall through my mattress when I lay down. My throat gets hoarse but doesn't hurt. I have low grade temps starting at 3pm every day. I ache all over my body, but not in my joints so much. My teeth are ground down from terrible Bruxism. Lately, I lose my urine in my sleep some nights and this is new. I have night sweats that drench my bed at night. I wear sunglasses everywhere I go.

Loud noises make my CNS go nuts. I can't handle extra stimulation at all. I feel tongue tied and slur my speech at times. My right eye gets swollen and that pupil is oblique and in the morning it leaks fluid, not sure if it's tears or CFS. If I wear sunglasses in the cold, that eye will fog up the lens, but not the good eye, as if it's putting out a ton of heat. I sweat from my head every time I eat. Out of breath with minimal exertion, but not from being out of shape. I get terrible internal tremors at times as well. Flu like symptoms come and go too.

I have ringing in my ears from time to time. I'm pretty stoic, so although the pain is god awful, my biggest complaint is the Overstimulation. Sometimes, Benadryl helps with this and I'm not sure why. I've seen every Dr. in town and I was told it was Lyme despite negative testing. I did have a positive DNA test for Babesiosis, which is a co-infection of Lyme, but even that is now negative after treatment. Antibiotics make everything worse and was told I was having a die off reaction, but again, my testing was negative, I don't ache in my joints, and after 3 years of Abx, I'm no better, but in fact, worse. I feel toxic and get confused at times even though I know who I am and where I am. I was told I have a Tortuous Vertebral artery near the brain stem perhaps impinging or pushing on the medulla, but that it couldn't be causing these symptoms.

The MRI's never said to rule out Chiarri Malformation, but this one I'm having tomorrow does say that. I'm thinking that perhaps it just didn't show or that it was missed on previous scans. I did a screen capture of the image that would show it from an MRI early in 2013. If anyone can see anything like Cerabellar Herniation, would you please tell me b/c I really don't know what I'm looking at. I promise I won't take anything as a "Diagnosis". I really just need answers at this point. I find that opiates help me cope a bit with everything, but nothing takes away this pain in my head. Thanks so much in advance everyone.

[Lynn_M]

I can’t say much as to the X-rays but I can tell you from my own experience that there does not need to be a odvious herniation to experience chiari pain.In my case I lived in hell for 28yrs before getting a correct diagnosis,there had been numerous MRIs,X-rays,many tests,and so many Dr.s I lost count.This is a sad thing to see people like you suffering without help,I understand completely the mental anguish of the chiari condition it cannot be explained unless the person telling the story has been in our place in life.Your symptoms sound as if you have chiari and the bad thing about it is that most reg. Neuros cannot diagnose this disorder if you feel you have done your homework don’t think the Dr.s know more than you in this case.If you don’t have a chiari specialist it is important that you find one even if it will mean traveling.I look back and wish someone had told me I needed a specialist,for a long time I also thought I had chiari but the Neuros said it was not there,they were wrong.Have you heard of chiari 0 ?That is sort of what my case was it took a NS who was trained in the chiari field to dx it therehave beenimprovements since surgery but I stillhave some pretty nasty symptoms,things are better and for that I am grateful.Good luck with the MRI,you’ll be in my thought s and prayers.

[jcdemar]

New Chiari, your symptoms sound spot on Chiari. The anxiety, pots, pain, vestibular issues…I think you are definitely barking up the right tree. Not A doctor, just my unprofessional observation- your tonsils are right at the foramen magnum, they are peg shaped, and it looks very crowded. My guess is that as soon as you stand up those tonsils descend downward even more. It can be hard to get the official diagnosis if the radiologist who is reading your MRI has the old school criteria of 5mm herniation. But please don’t be discouraged, there are surgeons who recognize Chiari below the 5mm and even acknowledge Chiari 0. The herniation size is actually not as telling of severity, it is a combination of CSF flow restriction, neuro deficits, presence if a syrinx, and symptoms. A cine flow MRI and an upright MRI can be helpful. Let us know how it goes with the next MRI.

Jenn

[BestFriendsGoFishing]

While you're seeking neurological aide, I would also suggest seeking some mental health counsel as well. Seeing a counselor or psychiatrist can give you great insight into the anxiety and a psychiatrist may be able to differentiate between medical and your anxiety. I know, firsthand, it's only a small part of the big picture, but a little relief is still relief. If your PCP can only prescribe Xanax, ask for a psychiatric referral to someone who can help pinpoint and treat the anxiety. I'm a huge supporter of mental health treatment concurrent with physical health. We're all here for mental health support! :D Hope this helps and you get some answers soon! XOXO