Chiari Online Support Group

Was it really Chiari?


#1

I had surgery 12 years ago for 13 mm tonsils from my Chiari…or what I thought was Chiari. I got two years of relief. Since that surgery, my balance went to hell, my headaches returned (brought under control with Lyrica) and I then had two gamma knife brain surgeries for trigeminal neuralgia. My balance has always been hinky post Chiari surgery, but two years ago my balance got so bad I could hardly stay upright, I was having trouble swallowing (scary!), slept all the time, had poor concentration and had ice on the back of my neck constantly. I have had numerous MRIs and all have shown, even immediately post-op, slumping of my cerebellum.

I was finally suspected of having a CSF leak, and after 3 blood patches that did not work for more than 3 days, I went to Duke, which is one of a handful of facilities that have a CT scanner with fluoroscopy that could pinpoint where my leak was. They tried using fibrin glue in the blood patch twice to try and plug the leak. It turns out I had a fistula, a bad hyperdense vein that was being told by my spinal nerve to drain my spinal column.

I had a brief 1.5 hour surgery to cut the spinal nerve and get rid of the bad vein. That was last October. For the first time in 13 years I have had a normal MRI. Suspicions are that I NEVER had Chiari, it was all a result of my leak and a “dry” brain…ditto for the headaches, imbalance, swallowing issues and trigeminal neuralgia…I now am part of a research study, so I hope my story can help others investigate different possibilities for Chiari type symptoms.

Good luck to you!
Mollycule


#2

Its interesting as while I have a Chiari malformation and some definite symptoms (blackouts now are >15 minutes at a time) they won’t treat it as Chiari.
I do wonder if there is something else it could be, low pressure would make sense for many symptoms.

However, was your heart rate lower when you had your headaches? If you had Chairi and a blockage causing high CSF pressure and crushing bits of your brain including the brain stem then Cushings Triad would follow that your heart rate should drop with the raised ICP.

That’s the problem I have, a lot of incidental information here, but no real solid info (other than ICP bolts I have not heart of NHS cini-MRI’s, so I think testing is more primitive here). Incidental information like my heart rate always drops on consecutive days with a headache, same pattern for 2 years.

If I had low pressure I would expect the opposite, laying down would be best and most comfortable, all my pointers are for high CSF (pressure behind eyes etc).


#3

I am not sure if my heart rate was higher. I do know that during my first pre-Chiari surgery my headaches were not positional, and sitting up with ice on the back of my head offered the best relief, as it did post–decompression surgery. When I coughed or sneezed, however, my headache would get worse or begin, so maybe it was Chiari. There is no way to know, as the technology to find my venous fistula did not exist 12 -13 years ago.

good luck to you in your search for pain free days. When I wanted to give up my family wasn’t!

Marcia


#4

Its all guessing, but sitting up points to higher pressure being more likely then lower pressure. Since sitting at an incline (~30 degrees) is the most efficient way to drain the ventricles for high ICP, something I learned after I found that was also the best way to handle my headaches, so it may be a clue to my condition. And your operation likely was needed then :slight_smile:

I did get one period, for a month or two, where I had a numb face and roof of mouth every time with excruciating headache pain for a mercifully brief couple of minutes. Really never felt pain like that before, oddly that was better to handle laying flat, but recently I’ve had the numb face return, trying to lay flat definitely didn’t help… I really wish I could know what was going on inside for sure.

Just a theory, but I wonder if you had higher then normal pressure for years that caused a fistula? Who knows, too much can go wrong to worry about in life :D, in my case I broke two vertebrae lower down (crushed) in a car accident and I’m wondering if I didn’t start life with a Chiari malformation but the shortened spine pulled the brain down a few mm’s? No old MRI’s to compare to (did have brain surgery for cyst at age 4 though - not sure what imaging they did then).

Anyway, whatever it was its good to know its fixed!


#5

Dear Gareth:

I had no previous injury that could explain a fistula. I also have 5 cysts in the area where the fistula was, but they were not leaking. My current doctors have no explanation why I had/developed or if I was born with a fistula.

A consulting doctor I saw before my Chiari surgery ( Dr. Heffez, who now runs Wisconsin Chiari Clinic and was featured on 20/20 or 60 minutes back in the day about Chiari) thought that I was born with it as I told him was cross-eyed at birth and have asthma and life long migraines…how he came up with those as presenting conditions is beyond me, I thought he might also explain it was the cause of my crooked teeth!

I went to a Chiari support group meeting here in person shortly post-op, but was freaked out by the other patients blaming everything from their rebellious teenager (could he have one too?) to their late potty training daughter on Chiari…geez!

I now only have an occasional sinus pressure headache cured by 2 acetaminophen. After my Chiari surgery when the headaches returned, I was gobbling fiorinal. Tremendous rebound headaches that were eventually put at bay with Lyrica. Fiorinal is now banned in Europe (maybe US too?) as it is a barbiturate.

Fortunately, my decompression surgery was not awful, I was discharged in 48 hours and had no complications…but my post-op MRIs still showed slumping and now I can’t ride roller coasters (boo hoo) or do yoga (yay!).

When I was waiting for surgery at Duke to fix my fistula I was told to drink coffee (which I hate) as it raises your cerebrospinal pressure. Maybe laying off caffeine would help if you’re a coffee addict?

Hoping for a pain free and upright ! day,

Marcia


#6

There is speculating, and there is definitely going off the wild side :slight_smile: In my case the spine feels a probable, but not sure if it helps, might contact the consultant who operated originally 10 years ago (restored the height of a couple of vertebrae). One of the Chiari specialist centers listed car accidents and Chiropractors are the two most common initiators of Chiari symptoms.

Its odd with my headaches, I’m not 100% sure what does exactly trigger them, but once they are triggered they seem to have a feedback loop type effect getting worse and worse. My unconscious episodes have gotten longer too - 15 minutes recently along with a 5 and 6 day headache in the last month…

But good today. The brain slumping after making more space for it is something I’m concerned about with the surgery, it seems an obvious thing to happen, which is one thing why I wonder about the spine shortening etc. I’m sure greater minds than mine though have thought about that aspect of surgery.

And as Ben Carson says to his patients, he doesn’t know any medical procedure where it helps to worry :slight_smile:


#7

But I’m a mother, I live to worry!

I did strike up a friendship with a Chiari patient here, my neurosurgeon asked if she could talk to me about my surgery before she had hers. Unfortunately her decompression surgery was not as rosy as mine. After a year of hell, she found out at the Chiari Institute (in NY, I think, they don’t take ANY private insurance!) run by the founding fathers of Chiari surgery whose names escape me that she had a tethered spinal cord that was the source of her issues.

Blacking out is something I’ve only done when shown needles or blood…needless to say I’m over that now after all the medical crap I’ve been through. That is very worrisome, I would think your doctors would be all over that like a duck on a June bug.

Mollycule


#8

My blacking out is consistent, I just go either very loose or rigid, and flop down apparently. And then lay still for X minutes until I recover, I did about three times on my own yesterday (and threw up once, can’t remember so I guess I was out).

I too would have thought the doctors would have been all over that, but A&E treat it as something that has happened before - so that’s okay (as if that’s an explanation). While specialists don’t really seem to be all that interested in providing a convincing explanation, I’ve had migraine offered up (no explanation at all) and on the 4th attempt at trying to explain it with epilepsy - even I know it isn’t epilepsy. Neurosurgery have confirmed there is a Chiari malformation, my symptoms point to it, but on the basis of MRI’s done when I felt fine they decided the flow was fine (no cine-MRI either), so back to migraine as diagnosis…

The UK doesn’t have multiple centers of Neurosurgery competing for patients against each other, just one in the south (London) and one in the north (Manchester?) since its state planned healthcare.
My guess is that they have 4x the number of patients they can deal with, so non-life critical ones get pushed away, alas that would be me.

Looking into seeing someone elsewhere in Europe (Austria would be my first choice) since I can get the government healthcare to pay up. At least that’s how I see it as I’ve not had a great impression of whats going on and need to find somewhere that has a more positive culture to the healthcare.