I've had a severe, persistent, incessant headache for four months. The symptoms are bizarre. It started as a cap of pain at the top of my head, sometimes squeezing, sometimes pressure, then burning and tingling. It then spread to the rest of my head, sometimes on one side, sometimes the other. Sometimes back at the top, sometimes at the back, or behind the ears. My ears hurt off and on, and I have intermittent tingling in the right side of my face and in my legs, arms, and chest. In addition, I have tremors in both hands, and episodes in which the skin over my whole body feels like it is on fire. I also have the sensation of pressure/heaviness/hardness in my chest and esophagous. And there is some problem with my right eye, diagnosed as aniscoria, but now apparent reason for the pupil's uneven dilation, and the optometrist says the optic nerve and retina are healthy. The eye also hurts more often than not. I have had a CT, MRI, and CTA of my brain, and an MRI of my spine, all normal. I have also had a lot of bloodwork done, and again, no sign of infection, inflammation, auto-immune disorder, etc. The doctors are baffled. I've been referred to a neurologist, but there's a waiting list (County Hospital). Has anyone ever experienced anything like this? Could it be some form of chiari malformation? Is it always clearly delineated on an MRI w/out contrast?
Hey there! Your story sounds oh-so-familiar. MANY Chiari patients are told that their scans are "normal". But, only a Chiari specialist can tell you whether or not they are truly normal.
Your symptoms sound very Chiari-ish to me. It took us 8 long months to find out that my daughter had Chiari. Her tonsil herniation was not large, so the doctors did not recognize it as Chiari.
I would find a true Chiari expert. Dr. Rosner, Dr. Frim, Dr. Oro, Dr. Heffez, Dr. Wiebe, Dr. Fletcher, and Dr. Bolognese are a few that I know of that acknowledge what is called Chiari Zero. This is the term used for patients that do not have large herniations.
Don't give up! Your symptoms could be caused by something else, but you want to make sure that a real Chiari specialist reviews your case and determines that.
Rebecca is right, ur symptoms do sound chiari-ish....there r many conditions with overlapping symptoms it can take awhile to get a dx....
Do u have a copy of ur MRI and the report?....if not call the facility that did the studies and ask for copies so u can get a second opinion. Always ask for copies when u go in for all tests.
This will make it easier on u in the long run.
A true chiari specialist is what all chiarians and their family members will advise is the #1 thing u must do.
Get ur copies of the tests and review them urself and see what u can find, it is sometimes possible that the radiologist mentioned low lying tonsils or incidential chiari on the report, but ur dr felt it was not the cause of ut issues and did not mention it to u.
Ahh! not trying to hijack the thread, but i just wanted to say that when i spoke to Dr.Oro's office about my MRI's I sent in, his nurse told me that they don't believe in chiari zero "philosophy" as she put it...then she said that is where they and TCI differ on their opinions (and why I got 2 different ones). So that is just weird...has anyone here been treated for chiari zero by dr.oro that you know of...if so, they apparently just didn't want to deal with me lol...who knows!!!
But TommieB....this is NOT to say DON'T send in your reports/MRI's to his office---the more opinions and info the better I think. and it could be that my case is just weird lol. I have heard nothing but the best about him :)
Yes, it is very difficult now to find a doctor that is on board with Chiari Zero (which, btw, is tonsil herniation less than 3mm or 5mm, depending on whom you are talking to).
I do know of Dr. Oro treating a patient that had Chiari Zero. She had no tonsil herniation, but also NO FLOW. He insisted that she be operated on right away. But, he also has stayed away from the controversial issues in Chiari.
Plus, I had a nurse for Dr. Frim tell me that my daughter didn't have Chiari. So, my point is to make sure that the DOCTOR himself actually sees the films and evaluates your situation. Don't just trust the word of a nurse.
My daughter developed tremors in her hands and head a few weeks ago the mri showed chiari with a 5 mm herniation the neurologist said it would not cause tremors. She said my daughter needs a psychiatrist what kind of dr is this?
Hey I know my daughter needs a new doctor but the problem is I dont know of any good ones in virginia. I mean she is 19 years old and hasnt been able to go to work or school in 3 weeks because of this. As a mother it is so hard to see her suffering everyday.
If u r in VA and want a chiari dr, u may need to travel to get to one. I and teh forum here does not have a complete list of chiari drs, but we do have a thread with q list of chiari specislists that the members here have been to and liked.
There r drs in MD, TN....for example...and they all take diff insurances...so, u know how far u can go, and if ut insurance has ne restrictions....let us know and we will help u the best we can....
I also had the tremors and occassionaly still do.....but I don't have ne of my symptoms with the intensitiy as I had prior to surgery.
Traveling is not a problem. You cant put a price on helping your children. I just want to get her better so she can go back to school and to work. The neurologist put her on tranquilizers and told me she needs a psychiatrist wow I think the neurologist needs that psychiatrist.
I just read the radiologist report from and MRI I had done over a year ago.. which my doctor never mentioned to me. It said I have, cerebellar tonsils are somewhat low-lying, suggesting mild cerebellar tonsillar ectopia. No Hydrocephalus. What does all this mean and does anyone know a specialist in Michigan?
Low lying tonsils mean ur cerebellum tonsils are sitting lower than they should.....most NS only consider it chiari if the herniation ( tonsils r sitting ) is 5 mm....if lower they do not consider it at all....many chiari specialists will consider it chiari 0 if below the typical 5mm.
We all know we can have symptoms with a herniation less than 5 mm, but many drs also do not feel it is possible....
We do have a list of drs that members here have gone to, this is not a list of suggested drs, but a place to start doing research to find the dr u r most comfortable with.
We do suggest u ask enuff questions and determine if they r a true chairi specialist.
With low lying tonsils the herniation of the tonsils can block the flow of CSF which could result in hydrocephalus.And this can still be a result after surgery, it is unknown as to y some that have the surgery will experience this issue.
Find a chiari specialist and get an opinion as to what is going on and if u may have other chiari related conditions like a syrinx, tethered cord , EDS, PTC....
Just wanted to say Hi and ditto to what selma and rebecca said. I will stress how important it is to find a chiari specialst! Otherwise you waste time going to drs who will most likely dismiss your problems and you just end up being upset ... at least thats been my experience. I hope you find answers and i know you will find support here because we all understand! --Shannon
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